Jaime's World

ER/Admit/Discharge/Glasses

2012-01-13T16:44:00.001-08:00

Yup, a lot has happened in a week since my last post!
In the wee hours of the early morning on Wednesday, Jaime started vomiting blood. We immediately took him to the ER. (Thanks, Scott, Mom & Dad for taking care of Jared for us!) While the ER dr. was assessing Jaime and asking us what his vomit looked like, Jaime threw up blood again...at which time, the ER dr. casually got up, stopped the assessment and said, "I'm going to make some phone calls." I said, "we're going home, right?" (obviously knowing full well that Jaime would be admitted....you don't send a hemophiliac vomiting blood home!) The nurses started an IV line, I administered his Factor and he was critically care transferred to The Cleveland Clinic. He was given Factor and Amicar for his hemophilia and put on a monitor. We consulted with hematology and GI. Everyone decided to just load him up on hemophilia meds and watch him. He did OK, and was discharged late last night. He's very pale and anemic at this point and in addition to his hemophilia meds (he still has his IV for Factor infusions), he has to take iron supplements. We went to his pediatrician today who said that it will take him at least 6 weeks (probably longer) to recover from this. The GI drs. believe that his bleeding was directly related to his procedure last week. See, Jaime came home from Cincinnati and had an IV placed for additional Factor. He received 2 doses a day for 3 days. Monday morning, his home IV clotted and I had to pull it. I spoke to the hem/occ at Cincy who said as long as he wasn't actively bleeding we could keep the IV out. Jaime was NOT bleeding at the time. Then, Tuesday night/Wednesday morning the vomiting started. Like I said, he's OK, not perfect, but he's HOME...again! He is having black (old blood) stools and he threw up today, but there was no blood thank goodness! Here's hoping we stay home and don't have to be readmitted.
So, as I mentioned earlier, we saw Jaime's pediatrician today. I just wanted someone who knows him well to eyeball him and give me her opinion on things. While there, she told me that she received all of Jaime's reports from Cincy. While on the subject, Jaime's drs. in Cincy have been fully aware of his admit in Cleveland. Today, the dr. who did Jaime's manometry studies called me. He's soooooooo nice! He told me that Jaime does indeed have some motility issues in addition to his distended colon. He said that he was going to talk to Jaime's GI in Cincy and see about putting Jaime on a medication to speed up his bowels a bit. He also made it clear that Jaime needs to continue working on feeds and chewing. Basically, he said that Jaime has several issues going on with his digestive system and adding an additional medication will only solve some of it, but until he can learn to chew normal, he can't fully have "normal" digestion. So, we're just hanging tight for now to see what Jaime's Cincy GI wants to do.
In other Jaime news...we went to the eye dr. today. I took Jaime to a Rainbow's dr. for a 2nd opinion because I felt like his CCF dr. wasn't being proactive enough and to be honest, he kind of ticked me off during our last visit-we waited nearly 3 hours and he came in and spent 3 minutes with Jaime and said he was great. Well, anyone that knows Jaime, knows that he has had eye issues for a long time. Jaime's pediatrician referred us to the dr. that we saw today. He said that Jaime needs glasses. So, late this afternoon after lots of phone calls to optical stores trying to find someone that took Jaime's insurance, we found a store! Jaime was sooooooooo excited to try on his glasses (not sure why), but we picked out a wire frame for him. Actually, we were told (by several stores) that we had a very limited selection due to his size and age and that wire frames were the best for him. He looks super cute in them. They should be ready in the next week or 2. We're due back to the ophthalmologist in 3 months to see how it's going.
So, that's the latest, never a dull moment here!

OR DAY 1-5-12

2012-01-06T09:43:00.000-08:00

I was so tired last night that I couldn't stay awake long enough to do a proper post...so here it is!

Prior to the OR.

Jaime was taken down to the OR holding room about 2:00 pm yesterday. He had his last giant "poo" in the holding room....oops! There we met with the physician conducting the studies. After talking in length about Jaime's digestive issues, the dr. decided to change what we were doing in the OR. This is what Jaime was supposed to have done...an esophageal and colonic manometry. Then it was changed to an EGD, esphageal and colonic manometry and a colonoscopy, a colonic manometry, a balloon dilation and Botox. We walked him in to the OR (something we decided that most parents go their whole lives without ever having to experience-and thank God for that), laid him on the OR table...kissed him goodbye as he drifted off to sleep. We went down to the cafeteria, my phone rang (my heart stopped), it was the OR...changing the procedure yet again! I told them to do whatever they needed to within reason and that I would consent to it. So, what did he end up with...he got an EGD, an esophageal manometry tube placed, a balloon dilation of his pylori sphincter (the area that empties food into the intestines), he had Botox injections in this same area, he had a flexible sigmoidoscopy and finished with Botox injections in his anal sphincter. He had several biopsies along the way as well.

After the OR, back in his room.

So, why did they do all of that? Well, the balloon was placed to expand the sphincter to help his stomach empty faster, the Botox injections are to relax the area to allow for easier passage (both in the pylori and anal sphincters). So these were the "correction" to the emptying issues. The only problem is that this only lasts about 2 to 3 months. So, depending on how the next few months go, we may have to do it all over again or he may end up on medication that allows for him to have a faster digestive system. We won't know that until we get the results back from the Manometry study that is currently running.
Before I get to the manometry, let me explain a finding on the EGD. Someone finally figured out what was going on with the "narrowing" near the esophagus! It's actually a vein that goes along the back of the esophagus...the downfall to this...it's constantly pulsating and this is likely one of the reasons he gags and throws up a lot. The way to fix this is actually through a heart surgery...in which he will NOT be having. There is potential for Jaime to grow out of it, so the GI dr. was just going to make the cardiologist aware of this finding and have it monitored that way.
Now on to the manometry study. Jaime had the tube placed in the OR yesterday...to have the study started today. It takes 6 hours, we're actually almost done. First they hooked him up the to manometry machine, ran it for an hour, then gave him IV medication, ran it for almost 2 hours, then let him drink Pediasure. They ran it for another hour or so, finally he got his last dose of IV medication for the study and he has to be on the machine until around 2:30 or so. They will pull his tube (the one in his nose that goes down into his small bowel) and we should be good to go. It will take a week or so for the dr. to interpret the study, they will call us with results sometime next week.

On the manometry machine.
All of those blue tube looking things to the left of the picture are sensors in the big tube in his nose down to his intestines. The monitor shows what his digestive system is doing.

After the first dose of medication on the manometry.

We will be discharged today. While the study will be done before 3:00 pm, Jaime's hemophilia medication will NOT be here until AFTER 3:00 pm. Jaime will be coming home needing IV Factor twice a day for the next 4 days. His factor VIII level wasn't very high after the OR, so they're pumping him up again. Jaime's home nurse will come over tomorrow to start a line and I'll infuse him until next Tuesday. We just need the meds to do it with. They want to cover him since he had so much work done, including the injections. So, that's it in a nutshell.

After FINALLY being aloud to drink...he wanted Banana Pediasure...and he got it.

Jaime's been a trooper through it all, though I have to say, he pretty much hates everyone that walks in the room. He immediately starts crying...and it's a pathetic cry because his throat is so horse from the breathing tube in the OR...not to mention that he's only had 2 Popsicles and drank 7 ounces of fluid in the 3 days we've been here. He even managed to kick Bev when she was here visiting because he doesn't want anyone here. :( He's literally done nothing in the last 24 hours except lay in bed and pretty still I might add. I hope that he's able to go back to his normal self once we're home. I know he misses Jared a lot, so seeing him will perk him up.

Anyway, that's the update. I'll try to update later this weekend to let you know how Jaime's doing. Thank you for continuing to keep Jaime in your thoughts...it means a lot to us!

The Holidays have come and gone...and now we're at the hospital.

2012-01-04T17:58:00.000-08:00

For those of you that don't know...Jaime has been admitted to Cincinnati Children's Hospital today. This is the week that we're FINALLY getting the rest of his digestive studies done. Today has been quite a busy one. It started with us driving from Columbus to Cincinnati, (thanks Titi and Michael for letting us spend the night and having dinner with us). We got to the hospital right at 10:00 am. We were admitted to A4South 39 (for those of you locals/nurses that are available for a visit). Once here, we had an amazing nurse and PCA. (Jessica and Tiffany). They called the Childlife Specialist, Patty to explain the NG and IV's to Jaime. She came up and Jaime helped her insert an NG in her doll, Theo.

Patty & Jaime inserting an NG in "Theo."

After the explanation, it was Jaime's turn. Needless to say, he wasn't as cooperative as Theo was! ;) The nurse started with an IV....it blew, of course, sooooo, she poked him again...nope, lost that one, too. Then she called the IV team to come up and do it. While waiting for them, she inserted Jaime's NG. He turned a nice shade of purple/blue and gagged through it all. Once recovered from that...lo and behold the IV team was here! One of the girls ALWAYS gets Jaime's IV's...and the 1st time, too! Today was no different! Thanks, Brynn!!!! :)

After the IV pokes and NG.

After that, Jaime was wiped out! He fell asleep on me and his IV and NG fluids were started. He's getting Golyetly through the NG. One would think that it would work on a little guy, right? WRONG! This is JAIME that we're talking about. So after 6.5 hours, 800mls later of Golyetly, the decision was made to irrigate Jaime's bowels. We thought the NG was bad.....man, colon irrigation is 10,000 times worse! :( Tom, the nurse, PCA and I felt absolutely horrible for Jaime. He was crying so hard and it took a long time, too. The goal was to get him "started." Well, we heard that he has an order to irrigate his colon every 3 hours unless he can go on his own. I am happy to report that he literally JUST went....8 minutes to spare! PHEW!!!! Clean up, room 39!

Post colon irrigation

Enjoying his 2nd grape Popsicle.

Tomorrow he is due to go to the OR at 1:00 pm, providing we get him fully cleaned out by then, so that he can have his manometry studies started. They may do biopsies as well. If they do, Jaime will need to come home with IV factor for his hemophilia through the weekend again. As for the hemophilia part, he will be dosed tomorrow before going to the OR to cover him while they are messing with him. The whole procedure...if all goes well, should take an hour or so. Please keep Jaime in your thoughts and prayers tomorrow afternoon....going to the OR is ALWAYS scary.

On to happy news...we had amazing holidays! We spent Christmas Eve and Christmas with my family, the boys had so much fun. Thank you to everyone who sent cards, presents and overall well wishes for the holidays!

A couple of new toys.

After Christmas, the Kozik Family came to town. They have Emily, a left-sided CDH'er, also born in Cincinnati. We had a blast with them...we need to visit more often for sure! (They live in Illinois).

Emily playing Jaime's trumpet.

Then, for New Year's, my in-laws came to town. Tom had a gig, so Jared, Tom's mom and I rang in the new year together (Papa and Jaime slept! ;) So, that brings us to today!

Here's hoping that 2012 brings all of us good health...and ANSWERS for Jaime's issues! :)

Happy New Year, everyone!

Exciting News

2011-12-15T11:21:00.000-08:00

Yesterday, I FINALLY decided what to do with Jaime when he turns 3. See, Jaime is part of the county's "Help Me Grow" program. When the kids turn 3, they become the responsibility of the school district. Most of the school districts have their own preschools to handle kiddos with special needs, they also have a lot of mainstreamed kids in the class, too. Wickliffe is no different. Jaime could go to Wickliffe Elementary School when he's 3, but....today, I signed him up for Broadmore School in Mentor. For those of you that don't know, Broadmore is a school designed to meet the needs of children with all sorts of disabilities. Their preschool has "typical" children in it, as well, but Jaime will be deemed a "special" child because of his medical and therapeutic needs. Our goal is to have him enrolled only during "healthy" months, so he won't be there during flu season, but will return after.
Some things he's working on is walking/running. He walks on his toes and still has a "wide base" like a new walker. When he runs, he "march runs" rather than a "normal" run in which he should be doing by now. There are a few other gross motor skills, like kicking a ball, standing on one foot and posture-he's very tight in his shoulders and neck. He's also working on fine motor skills. He's testing at about a 16 month old when it comes to fine motor skills. (For the record he's 32 months old.) He can not self feed with a utensil and can not "color." He can't mimic drawing a line or circle and certainly has no clue what to do with scissors. I've been told these are all things he should be doing by his age. As for eating, well, we're getting closer to a 12 month old eater. He's just now starting to chew. It all started one day with pretzels. He still forgets "how" to chew, but we're getting there. Jaime is also still very picky about when and what to eat. I've started offering everything that we eat in tiny portions, he eats what he wants (or can) and then is done. Thank God for Pediasure, it's certainly keeping him alive. Other stuff we're working on is endurance. Jaime's still struggling in this area. He can be active for only so long before petering out (mostly due to his lungs).
In other news, I accepted a full time position at UH today. It's in Euclid, so it's only 7 minutes from home, rather than the 45 minutes (on a good day). I'll be starting mid-January. I'm just hoping that I can work everything out with my nurses to have someone here every day so that I can fulfill this position's requirements. We'll see how it goes! It will be the very first time I'll have a full time job since having JARED! It's going to be weird to work Mon-Fri. I hope I like it! ;)

That's about all for the exciting news....in not so exciting news...I had a root canal retreat today...YUCK, or should I say, "OUCH?" Also, I know that many of you knew that I was in the hospital last month, I'm still having issues with my potassium and there's still no good reason for it. We're kind of in a holding pattern on tests for now. I'm just taking potassium supplements and hoping for the best! :)

Finally, today marks Tom and Jared's last day of school for 2011. So, 2+ weeks of all of the boys home; this should be interesting! HA!
That's all to report for now.

Happy Holidays....T-9 days until Christmas!!!!! (are you ready, I think I am!)

Thanksgiving Celebration

2011-11-27T11:00:00.000-08:00

We've had quite a busy 5 days. We left Cleveland on Wednesday morning and drove to St. Louis, MO. For those of you who don't know, that's about a ten hour drive....not counting stops! It made for a very long and tiring day, but once we got there, we met up with Tom's brother and kids whom we haven't seen in nearly 4 years...and Tom's parents. We all had dinner together and relaxed at the hotel. The next morning we got up and drove to Hermann, MO, which is about an hour and a half away from St. Louis to have Thanksgiving dinner at Tom's Aunt Janet's house. It was the first time Jaime was able to go. Janet lives on a farm and cares for cows. The kids had a blast! That evening, we drove back to St. Louis and the kids swam in the hotel pool.
Black Friday was another fun-filled day with family! The only store we hit was a hobby store in St. Louis. The kids were all able to get something to bring home. I was able to get a beautiful, turquoise glitter butterfly ornament for my Christmas tree in honor of Jaime and CDH (Breath of Hope, Inc.), thanks, Nana! I will definitely put pics up on the blog when we get our tree up! :) After the hobby store we went back to Tom's Aunt Elaine's house. I stayed there with Jaime so he could nap (and I needed to do a little laundry) and the rest of the clan went to a Spaceship park and the Science Museum. When they got back, we were treated to a Magic Show put on by Tom's Aunt Janet who came in to St. Louis from Hermann to spend more time with us. It was super cool! The kids (and adults) were amazed at her tricks! After the magic show, we had a delicious Italian dinner-thanks, Papa! Tom's dad always tries to let me have Italian food on our trips! :) After dinner, we went back to the hotel to swim one last time with Ted, Jessica and Joshua. It was very sad so say good-bye to them. They live in San Diego, we can't fly with Jaime and all of his equipment and Ted often travels for work, so it's very hard to see them. We are so grateful that we were able to get together these past few days.
Saturday morning, we left St. Louis and headed back to Indiana (Tom's parents' house), but....we made a few stops in Illinois on the way. We stopped at an Arby's for lunch. Sitting behind us were two veteran pilots-we knew that because of their hats. I told Jared he should talk to them, he didn't want to. So, we left, but just before we started on our way again...Jaime needed changing. I changed him and brought the diaper in to throw away. On my way back from washing my hands, I talked to the pilots who asked me if we had 30 minutes to spare...I said sure! We followed them to the Logan County Airport where they were starting a flight museum. Jared was able to "fly" in a homemade cockpit simulator and we were able to see some war planes that were on loan to the museum. http://www.heritageinflight.org/ It was such a fun, spontaneous adventure! After the museum, we went to the Kozik's house for a visit which turned into having a WONDERFUL dinner with them! For those of you in the CDH community, the Kozik Family delivered Emily (LCDH) in Cincinnati about a year before Jaime was born. We had to drive through their town to get to Indiana and thought...why not stop? It was so great to see everyone again. Jaime was pretty jealous of Emily playing with his big brother! ;) Thank you, Sue and Mike for your hospitality and to the kids for playing with my kids! I really hope you stop by during the holidays, we'd love to see you again! :)
We got back to Nana & Papa's house in the evening. We relaxed and shared our photos with them. This morning everyone went to church and then we headed home. We're about 2 hours away as I type! It was a busy, but extremely enjoyable 5 days!
Jaime did well with traveling...he usually does. He didn't eat much, but the good news is, we were able to control his bowel movements. (This is usually pretty challenging on a normal basis, traveling usually makes it worse.) We have nothing new to report in the way of medical or progress with Jaime. He is as he was in my last post and we still have plans to go to Cincinnati in early January for additional testing. This week I have a meeting with the Help Me Grow social worker to discuss school options for Jaime...YIKES!
I've attached the slide show of our Thanksgiving festivities to this email. Enjoy! Happy Holidays!

29 more days until Christmas......

50%

2011-11-09T17:15:00.001-08:00

I think that Jaime has spent his whole 2 1/2 years of life on the border, 50/50. Jaime's sleep study was no different....in true Jaime Trost fashion, his sleep study came back showing that he has obstructive sleep apnea, but he's exactly in the middle as to treat or not! Jaime's sats didn't go below 93% which is AWESOME and his co2 level never went above 36, also awesome! However, he did stop breathing a few times an hour. So, what do you do with that info? Putting him on o2 or cpap wouldn't benefit him because his levels are stellar! The only way to "treat" his sleep apnea would be a tonsillectomy, but even that may not cure it because he has such bad tracheomalacia (floppy airway). A tonsillectomy poses a significant bleeding risk and the only way to treat the tracheomalacia is with an airway surgery that Jaime will NOT be having. So, once again as with his everything else, we get to play the "wait and see" game! (I HATE the wait and see game!) They are using this as a "baseline" study, basically throwing away the first one he had when he was 9 months old because that one showed him desatting. This is Jaime's new "normal." We hope with time it will get better. We'll have a repeat study or be more aggressive with treatment (tonsillectomy) only if symptoms get worse. In the meantime, we'll continue to have sleepless nights...at least now we know why, so I guess that's something?!?

Here are a few pics from Jaime's sleep study last week.

As for other Jaime news...he has FINALLY been scheduled for his manometry studies in Cincinnati. Jaime will be admitted just after the new year to have his bowels cleaned out and have his upper and lower manometry studies done. He'll be in the hospital for 3 days to complete the studies. Manometry is the recording of muscle pressures within an organ like the esophagus and colon, so hopefully this study will give us some digestive answers. For those of you interested in learning more about the studies, you can follow these links. http://www.cincinnatichildrens.org/health/c/colonic-mano/
http://www.cincinnatichildrens.org/health/e/esophageal-manometry/
Of course, they will probably come out "borderline" like everything else of little Jaime's! I just hate putting him through all of these tests and still not getting solid answers. I will say that since we started Jaime on Nexium, the vomiting has significantly improved....he's even eating a bit more. Like he's able to eat almost a whole pancake now, instead of a baby size one. This is HUGE! He still continues to have bowel issues, though. We can't get a good balance between constipation and diarrhea. Just tonight I had to give Jaime a glycerin suppository because he couldn't "push" on his own...then of course, there was blood in his stool because of pushing! Just a vicious cycle, yet so "normal" for him. This is why we can't potty train him (although he has peed in the potty a few times this week :).
Final Jaime news, he starts his third year of Synagis shots tomorrow. The home care nurse will be here bright and early to give him his shots (he has to get 2 because of the big dose). Then, he'll have speech therapy followed by the Early Childhood Specialist and speech therapist from Broadmore. I think that I'm going to send him there next year for preschool if his doctors clear him to go. Jaime's still technically "home-bound," he hasn't been cleared to leave the home for therapy or to attend toddler classes or group therapy sessions. We can go to the pool, but it's just us in there. It's so weird because when we do leave the house to go to the store or even for a dr. appointment, Jaime usually cries, he's a home body and HATES leaving the house. He certainly doesn't know how to act in public.

Before I end this post, I'd like to ask that all of you keep Jaime's CDH friend, Kamryn in your thoughts and prayers. Kamryn was born in June of 2009, Stephanie and I were pregnant together, she had twins, Kamryn (LCDH) and Brooke. Kamryn reherniated and had surgery today. She's in the hospital recovering. Many people think that once the kids get discharged from the NICU that their CDH ordeal is over, that is simply not the case. There's a constant worry, in Jaime's case, it's literally been one thing after the next. In Kamryn's case, she has done so incredibly well and now this! In my experience the affects of CDH last a lifetime. It's a HORRIBLE birth defect, we need much more awareness and research on it so that kids with it won't have to go back to the OR to be repaired again like Kamryn or Jaime...and all of the other kiddos who made several trips to the OR. I think it gets harder and harder as they get older, so please keep Kamryn's parents and sisters in your thoughts and prayers, too. Thank you, I know they will appreciate it.

46 days until Christmas! (Just saying! ;)

Ear Infection....

2011-11-01T10:46:00.000-07:00

A sucker makes my boo-boo ear all better...and it helps me take my medicine, too! :)

So, it FINALLY happened, we almost made it one year...Jaime got his 1st ear infection since getting his ear tubes on Dec. 1st, 2010. It's a bad one, too! Unfortunately, Jaime's tube in his left ear has lodged into his ear canal. They tried to remove it in the office, without success. The infection is so bad that I was told the ear needed to "calm down" before they could go in and take the tube out. So, in the meantime, Jaime is on antibiotic ear drops and oral ones. This infection is so bad that Jaime's lymph nodes are very swollen and sore, too. (That was the main reason for oral antibiotics, too).

In this pic you can see his "bumpy" (swollen) neck.

He's pretty miserable as you can imagine. While the left ear tube is no longer functional (not to mention stuck), the right ear tube looks great and is working just fine! :)
Tomorrow Jaime is scheduled for his sleep study, you know the one that has been scheduled and canceled several times since last February. The ENT told us that even though Jaime isn't feeling great, that we should still go. So, I'm going to take him tomorrow night. I hope it goes well and that they're able to get some of the answers that they're looking for.
Having said that...this latest ear tube discovery could pose a few issues. Jaime, most likely will need to get new tubes inserted, but will the new tubes make his ears great and cause his "illnesses" to gravitate towards his throat again? Throat infections restrict his airway which is already structurally abnormal. No one is eager to take out Jaime's tonsils because of his hemophilia...basically the only way the ENT will is if Jaime "fails" his sleep study. Of course if we don't fix Jaime's ears and just let them be without tubes...will that prevent throat infections? Which is "better" ear infections or throat infections? Certainly, ear infections are "safer" in Jaime's situation. Of course, if he has too many ear infections, it could affect his hearing like it did last year. He completely lost all hearing (which caused him to stop talking) for nearly 6 months. We do not want that either! So, here we are...once again in a catch 22 situation! We are going to meet up with the ENT and Pulmonologist in about a month to try and come up with a plan. Oh and for those of you keeping track, these are Cleveland drs. (Oh and on the plus side, Jaime will be starting his 3rd year of Synagis injections at home next week!)
As for our Cincy drs., that's a whole different set of issues. Jaime "failed" his first stomach emptying test on Monday, as he couldn't eat a whole egg. We went back on Thursday to have a "liquid" study done, rather than a "solid" one. Jaime was able to drink 1 ounce of Pediasure and then the test was started. Jaime had to lay on the nuclear scanning table for nearly an hour and a half. He had some periods where he'd realize he was "stuck" and start to cry, but overall he did well.
We got the results of the study...it was NORMAL. It took 37 minutes for that 1 ounce of Pediasure to go out of his stomach. I sent the results to Cincinnati, both Jaime's GI dr. and surgeon down there want to proceed with the manometry studies (esophageal and colonic). I'm waiting to hear back from Cincy as to when those studies may be. Jaime continue to have his digestive issues, from throwing up to being constipated...even needing 2 tries at an enema last week which still didn't fully "help" him.
In other news...on the day of the nuclear scan, Jaime saw the eye dr. He goes every 6 months because of his "lazy" eye. Jaime's overall vision is 20/30, which is great! It's just that his eyes don't always move together at the same time. His eyes actually turn in, rather than out. We're still not doing anything about it at this time...I sort of got conflicting reports from the 2 ophthalmologists who saw him. One wants to treat him, the other says let's wait and see. I was also told that we can't change something that is a neuro defect of the eye...likely due to any number of times Jaime was hypoxic. I may take Jaime to another ophthalmologist just to get a 2nd opinion. I just find it odd that two drs in the same practice can't agree on a diagnosis and treatment, so I need a "tie-breaker" dr. to figure it all out! (HA!)
It never ceases to amaze me that all of these CDH'ers start out in such horrible condition...some much worse than Jaime...and they are doing STELLAR! Then, there's Jaime...it's literally one thing after the next. I know that he's "better" than many, but just once I'd like him to "catch a break" and be well, without ANY issues at all. I'd LOVE for him to sleep through the night, poop normally, not have a constant faucet for a nose and a have a day where he doesn't throw up...and when I say he throws up...it's not just a "spit up." If he ingests 60cc's (2oz) he's liable to throw up 300cc's (10oz). It's soooooo weird! OK, I'll get off my soap box! I'm soooooo grateful that he's here!!! =)
Here are some Halloween pics! Jaime was a cow, who stayed home and helped me pass out candy and Jared was WaLuigi from Mario Bros. Both kids had a fun time (in spite of Jaime being sick!) Enjoy the pics!

Can you guess which pumpkin is Jaime's?!?Jaime today after his medicine and before his VERY SHORT nap!Oh and just an FYI for those of you keeping track...
54 days until Christmas! :)

1st Dentist Visit.

2011-10-20T18:34:00.000-07:00

I had the pleasure of taking Jaime AND Jared to the dentist this afternoon. What a trip that was! HA! Jaime was all over that place...partly because it was an "outing" for him and partly because he didn't know what to expect and kept running to Jared's chair. I think both boys' check-ups were as I thought they'd be. Jaime has 1 area of potential concern...we have to go back in 3 months. It's not soft now, but can get that way, if it does, she will have to put a coating on it for strength. She said it would take about 5 to 10 minutes and that we'd just hold him down to do it. We were also told to stop the Pediasure at night...YEA right, easier said than done. She understands his caloric needs, so until we can stop the Pediasure at night for good, we have to sneak in and wipe his teeth with a wet cloth (gently). I will let you know how it works out! I think he'll wake up...and ask for another cup of milk!
As for Jared...well, he has 2 small cavities. I fully expected him to because he doesn't like to brush his teeth. What I didn't expect was for the dentist, who specializes in pediatric dentistry, specifically children with special needs...to tell me that I needed to take Jared to Rainbow's to have his fillings filled! As if I don't have enough appointments with Jaime on my 2 days a week off....I'll get into that in a minute...now I have to schedule THREE additional appointments at Rainbows so that they can be fixed. She's not comfortable doing them in a non-hospital setting. Sooooo frustrating. Grrr....STUPID HEMOPHILIA! Jared's consult is scheduled for November 3rd, then we'll schedule his fillings after that. He'll need to get IV Factor before and after them. Well, if nothing else, this may make Jared think twice about not brushing his teeth. I will say that he's so freaked out about the fillings that tonight, he brushed, flossed and used mouth rinse without being told to. I thought that was hilarious! I hope he keeps it up so that these are the first AND LAST cavities he ever gets!
Here are a few pics of our dentist visit.

Jared getting his teeth cleaned.

Jaime and Jared in the background, getting new toothbrushes.

Getting ready for his cleaning. NO, he didn't sit here, I held him on my lap against the hygienist's lap, but overall I thought he did really good! (No gagging, which is always a plus!)

All done, he was soooooo tired he kind of laid on the chair backwards while I was talking with the dentist.

As for me being busy with appointments...here's the story...for whatever reason, Jaime has decided not to cooperate with the therapists unless I'm home with him. Apparently, he screams, cries and makes himself throw up when the therapists are here with the nurses. I don't know why...or what changed, but something did and now I have to schedule all of his therapy appointments when I'm off...which is only 2 days a week...sometimes only 1 day a week. For example, here's what we did today...Swim therapy, followed by Early intervention OT, Speech and PT. (See, I have to take Jaime to Broadmore for EI therapy, so those, too are on my days off). Then, we came home to meet the CCF PT. Today, we Kinesio Taped Jaime's feet in hopes that he stays off of his toes. We're supposed to do it twice a day for at least 30 minutes at a time. I still need to schedule an appointment with the neurophysiologist, but I simply haven't had time to do that yet. After Jaime's therapist left, I put Jaime down for a power nap, took a shower...got dressed, went to Jared's school to pick him up to take both boys to the dentist. Tom met us there, brought the boys home and I went to work for the evening. See, it's CRAZY! Tomorrow I'm going to try and take Jaime swimming again and then his CCF Speech therapist will be coming over. (We have a rotating door here...I know that many of you with special needs kiddos can fully understand that!)
Here are a few cute pics from the pool this morning. Jaime hasn't been there in a few weeks because he was sick and then the Cincy trip, so today was so much fun for him. He was slightly freaked out that there were other people in the pool (first time ever that happened), so he was pretty reserved for most of the time, but he still enjoyed it!

"Jaime's School Pool"

So, that's our day in a nutshell!!! :-)

Cincinnati Update...

2011-10-16T13:11:00.000-07:00

First let me back track...WELCOME FALL!!!!

Fall is upon us and it's chilly out, the perfect time of year for lighting the fireplace! :)

Here's a little update on what's happening here...
Jaime is becoming quite the proficient toe-walker...more specifically toe knuckle walker-NOT GOOD! Having said that, after careful PT evaluation, it's been decided that Jaime needs to go back to the Neurophysiologist to be checked out. There may be more to the toe-walking than we think....from a neuro standpoint. I'll keep you updated on when that appointment will be scheduled.

Also happening here in Cleveland...Jaime was supposed to have his sleep study tonight, but the hospital canceled it due to no cribs available...such a weird thing, right? He will now be having his study on November 2nd. I'm a bit bummed about this because this really is one giant piece to the puzzle for Jaime. I just hope he stays relatively "healthy" between now and then, otherwise they won't do it. Such a bummer for sure!
Continuing on with Cleveland news...Jaime will be having a stomach emptying test at Rainbows next Monday. This was actually ordered by his GI dr. in Cincinnati.

OK, now for the Cincinnati update...we had quite the whirlwind trip! We spent the night at Titi & Michael's house in Columbus and were made a WONDERFUL breakfast! Thanks, guys! Jaime got to play with Face (the dog) for a bit, then we headed south.

We were only in Cincinnati for 28 hours. (literally). In that time, we had the pleasure of meeting Tina and Owen at Ronald McDonald House (Tina just gave birth to twins last month, Warren (CDH'er) and Wesley. Sadly, they came at 29wks. and Warren earned his wings, but Wesley is doing stellar and was able to be transferred back to his home town! :) It was so great to meet them! Jaime and Owen played outside for a little bit before we headed to the hospital for his appointments.

Our first appointment was an Echo-cardiogram. I opted NOT to have Jaime sedated for this...we weren't entirely sure how it would go, but after how bad he came out of sedation last time and how bruised he got from flopping around like a fish, I was willing to take my chances in not having him sedated. I laid on the bed with him, the Childlife Specialist brought in a Buzz Lightyear Toy and a new Apple IPad 2...we put on Fresh Beat Band and that was it! He laid there like a champ! All of the staff in Cardiology were commenting on how awesome he did. Get this, were were literally in and out of the hospital in LESS than an HOUR! See, that's how good he did! :)
After leaving the hospital, we drove to downtown Cincy to check out the stadiums and visit the team shops. Jaime may have gotten a little something while we were out and about.

After that, we checked into our hotel and met The Luken's for dinner. Bev was going to come back up to the hotel for a visit, but Jaime decided to not keep his dinner down which caused us to call housekeeping and this is what she brought us...Only Jaime...I swear! HA!

After lots of cleaning up...we FINALLY went to bed. In the morning, Jaime got a "hotel bath."

Then, one of Jaime's favorite former NICU nurses, Jaime, came to visit and Bev did, too!

After their visits, we checked out and headed to the hospital for the afternoon. We were supposed to meet with GI first, but he was stuck in the OR, so Jaime's surgeon came over to find us. We had a very long talk with him, then Jaime's GI dr. came in. We all talked to come up with a "plan" for probably close to an hour and a half. So, here's the plan: Jaime will be getting a "full GI workup." We're starting the work up in Cleveland with the stomach emptying test, based on the results, Cincy will go forward in scheduling the remainder of the manometry studies. This means that we WILL be going back to Cincinnati sooner than later to have some GI studies done. The ones that they want to do require yet another trip to the OR and an overnight admit. These tests will determine ultimately what "major" surgery will be taking place in the future. Jaime's surgeon only wants to go in one time, we may be placing a feeding tube (g-tube of GJ Tube, depending on the results) and anything else that may need "fixed" will be fixed while repairing the incisional hernia. It's too hard to speculate at this time. We did, however, decide that when Jaime's incisional hernia gets fixed, that we will be having plastic surgery involved and we will be closing him with his own skin from his shoulder blade area. So, he'll have two "sore" spots, but we're all thinking it will be worth it in the end. And like I told the dr. Jaime's a boy, I don't care if he has scars! ;)
Once we were done in GI/Surgery, we moved on to see Jaime's Cardiologist in clinic. First stop was the EKG room. We got weighed and measured...29lbs and just about 3 ft. tall! :) We were worried about Jaime sitting still for the EKG, but as you can see...it wasn't a problem...thanks again to Apple technology! :)

Then, we were taken to Jaime's room where we waited for the dr. Jaime had a lot of fun setting up his own equipment while sporting his "Grammy-made" hospital shirt." Complete with a velcro front closure and arm closures!

The cardiologist came in and said that one thing Jaime WON'T need is another heart cath! :) He said his heart looks better and better each echo! YAY! Of course, Jaime's heart never was the problem. We were even told that his PFO (heart flap) has resolved! All good news in the heart institute. We're due back there in 6 to 9 months! Jaime's dr. is very conservative because he said that the pulmonary hypertension can come back...plus he's monitoring Jaime's sunken in pectus to make sure it doesn't cause any heart issues in the future.
After the cardiologist visit, we went to the lab to have the rest of Jaime's CDH study labs drawn and we got back in the car to head home. It was a long, rainy and windy drive, but we made it safely. We found Nana and Jared hard at work on their Haunted Gingerbread House.

Thank you, Nana for keeping Jared occupied while we were gone...and for doing a few projects, too! ;)
Today, we spent the day with my parents who were in for a visit. We had a yummy lunch with them where Jaime was once again well behaved do to Apple technology.

Tonight, rumor has it, Tom and I will be going on a date...WITHOUT KIDS! Thanks, Mom and Dad! :) (It will be the first one...probably ever...since having Jaime!)
So, that's what's going on in our neck of the woods! I'll update as appointments come up and results come in! Thanks to everyone for keeping up with us on this crazy CDH ride!

Fever/Tonsils/Cincy....

2011-09-20T17:52:00.000-07:00

First let me tell you about the wonderful weekend we had with The Smith Family at the Cleveland Zoo for the Walk to Cure Juvenile Diabetes! We were there in support of Connor. It was sooooo much fun for all of us. Abby Normal and the Detroit Lean, the band that Tom's in, was the entertainment for the day and Jaime adopted himself "Papa Frank," Colleen's Dad! Here are a few pics from the Walk.

Jared & Connor, the little Man, we were walking for!

Abby Normal & the Detroit Lean
(www.abby-normal.com, "Like" them on Facebook)

Jaime and "Papa Frank"

Jaime in Abby Normal, 2nd Generation! ;)

OK, fast forward to yesterday...Jaime had a fever of 102, was acting completely abnormal (and not because he "sat-in" with Abby Normal the day before ;) and was completely clingy. No obvious symptoms except a fever. So, in Jaime's World, this means that his tonsils are infected again. After getting text updates on Jaime from his nurse yesterday, I decided to schedule him an appointment with his pediatrician. I met Tom and the boys there after work. His temp was 101.6 in the office and that was with Motrin on board, so the dr. gave him Tylenol in the office. She also did a strep culture because he had large pus filled bumps on his tonsils...NEGATIVE. UGH! Now we have no good source except it's Jaime being Jaime again. No antibiotics were prescribed at this time...I do have to call her tomorrow if he still has a fever. At 6:30 he was back up to 101.8, so I'm thinking I may be calling her! Having said that, we also talked about me contacting ENT again.
I called ENT today. We spoke for about 20 minutes and sort of came up with a tentative plan. Jaime is due to have his sleep study here in Cleveland at the Clinic on October 16th. If the sleep study shows any indication of obstructive airway, his tonsils are coming out! If it doesn't, we may dig deeper for a source of the constant throat infections. One thing they are looking into is something called "PFAPA Syndrome." It stands for Periodic fever, aphthous stomatitis, pharyngitis and adenitis, in plain English, it is a syndrome that causes sores in the throat and mouth with a fever and swollen lymph nodes that comes and goes "routinely" every 3-5 weeks for a period of time (months). All of which Jaime has. This happened last year, two weeks after he got his ear tubes through about April. So, we're going to see if these seem to come scheduled...one way to treat this is a tonsillectomy. So, in short...if Mr. Jaime keeps this up, he's setting himself up for a tonsillectomy. We will do a thorough work up before going down this path, as it poses a HUGE bleeding risk for him. Just something that we're thinking about.
Now, as for Cincinnati...we FINALLY have a return date! We're going down there mid-October for our surgical consult. We're going to see our FAVORITE surgeon, GI and we're still working on hooking up with Cardiology at the same time, as Jaime is due for his routine Echo/EKG. Now, his sleep study will be after his surgical consult, so if it comes back that he needs a tonsillectomy, we will not go forward with the incisional hernia repair right away, as the tonsillectomy would be more of a pressing issue. Once again...a lot of "ifs" to consider! Jaime sure keeps us on our toes! ;)
Oh and before I close I have to share some exciting news...Jaime was weighed at the pediatrician yesterday....drum roll please....TWENTY NINE POUNDS! (OK so he was fully clothes in pants and a sweatshirt, but it counts right?!?) Of course today, he's not really eating because of his throat sores, so I'm sure he'll be around 28lbs before he gets better, but hey, I'll take any weight I can get on that boy! :)

Here's a pic of my sick skinny Minnie in his skinny jeans...can he be any cuter? ;)
(I think his head weighs 20lbs and the rest of him 9-HA!)

That's my update, wishing everyone a great week!

What we've been up to....

2011-09-16T10:55:00.000-07:00

Once again, time has gotten away from me. I haven't had a minute to sit down and write a "proper" update in a while. Soooo....here goes nothing....

Feeding...UGH! (Is that proper enough?!? HA!) Jaime continues to receive Speech Therapy on a weekly basis. His speech is progressing significantly...his new "big word" is "BECAUSE." It's so stinking cute to hear this little guy say, "behhcause" yes, there's a long "h" in it. His therapist said that he's about 4-6 months behind in talking. He knows all of his numbers 1-10 and many of them up to 20. He knows many of his shapes and all of his letters! We're working on colors...which for some reason has been such a challenge for him. As for feeding...he's got the oral skills of a 0-6 months old. He's not moving his tongue right at all, nor is he chewing. (Chewing in the functional sense, he does "chew" but it's more of a mashing.) Having said all of that, we're going to try a new tactic with Jaime...we're going to wean him from the sippy cup altogether. This is his only means of comfort, so we have to be very careful in how we do this. For starters we're going to move to Dixie Cups (Dad, you were soooooo on to something when we were there! ;) and special therapy cups in which Jaime's therapist is ordering for him. We'll see how that goes.

As for PT/OT, he had some regression with fine motor skills and toe walking and is back up to each of them being twice a month at home and once a month at Broadmoor. Speaking of Broadmoor, we have had the unique opportunity to take advantage of their "Help Me Grow" pool time. I take Jaime there for pool therapy twice a week! He LOVES it!!!!! The water is 90+ degrees and the air temp is warm...they have all of the toys, floats, etc. that you can imagine for us to use! Jaime even got to use the slide...though I didn't have my camera that day! Also new from Broadmoor are Jaime's ankle weights. We're borrowing them to see if Jaime wearing them will remind him to not walk on his toes. We call them his "heavy socks." He doesn't mind them too much. Not sure if they're completely helping or not, but they're certainly worth a shot!

The other news in Jaime's World is that we're still pending another trip to Cincinnati to plan for his upcoming surgery. We were supposed to get a test called a colonic study done...it's a test to basically test the colon function, but we haven't been able to quite schedule that in a timely manner. Having said that, Jaime's surgeon is still pretty eager to have us come down. We're also due to see cardiology and check in with GI again for the digestion issues Jaime continues to have, so we'll make an extended trip to get our visits in. I'm thinking (hoping) this trip will happen in October! We'll see!

On a fun note...Jaime and I had the pleasure of meeting up with a LOCAL Right-sided CDH family today! Michelle is 19 months old and was treated at The Cleveland Clinic, diagnosed at birth. She's amazing! Her and Jaime got to play at the park for a few hours this morning. It's so great to have a local family to relate to! The kids even have the same pulmonologist in Cleveland. :) We literally live just a few minutes away from each other! We will definitely be making more play-dates with the kids in the future! :)
Continuing with exciting news...last weekend we drove to Green, Ohio (about an hour and 20 minutes away) to participate in Max's Walk/Run for CDH Awareness. Max was born and cared for in Cincinnati, he fought a GREAT fight, but ultimately chose wings over feet. His amazing parents, Erin and Shawn, set up this walk/run in his memory. Also in attendance was the Hess Family. Their son, Adam was born in Akron with CDH and ran, completing the race like a SUPER STAR! It was WONDERFUL watching him cross the finish line....
Below are some pics over the last few weeks!

My 2 favorite guys with haircuts!

Reading the new Lego Magazine.

Swimming at Broadmoor's Pool!

New ankle weights.

At Max's Walk/Run for CDH

CDH'er Adam, crossing the finish line!

R-CDH'ers Jaime & Michelle

"Shell" & "Mamie" As they called one another! :)

Final bit of exciting news to share...this will hopefully one day directly impact both Jared's & Jaime's lives. The following link takes you to an article explaining that the University of Central Florida has won a $5 million dollar grant towards hemophilia research, more importantly, to come up with a PILL form of Factor! It would be awesome to give the boys a pill rather than an IV to manage their hemophilia! One step closer to becoming needless! ;)
http://www.orlandosentinel.com/health/os-ucf-nih-grants-20110902,0,2102771.story

Well, it's almost time for Jared to come home, so I should close! Until next time folks....

Hemophilia Walk 2011

2011-08-28T18:33:00.000-07:00

This weekend was the Annual Hemophilia Walk! I am pleased to say that our team, Jared & Jaime's Afterburners raised nearly $1700 in donations! Also, the Hemophilia Walk itself generated nearly $43,000 for Hemophilia Research, education and advocacy. THANK YOU to All who supported our team and those who walked with us! We had a BEAUTIFUL day! I can't wait to do it all over again next year! We're already making pre-walk breakfast plans and Jared's coming up with our new logo! Speaking of our logo...Our team won for BEST TEAM T-SHIRT! Jared got to go in front of everyone to receive a trophy for our team! Way to go, Titi and Jared-our team t-shirt designers! :)
Below is a slideshow of pics from our weekend! We started with a pre-walk party and ended at the Walk! Those included in the pictures are Jared, Jaime, Tom, myself, Titi, Michael, Scott, Jess, Connor, Sophia, Colleen, Ed, Connor, Lauren, Sue, Gloria, Julianna, Dominic, Jessica, Alexis, Ellie, Jordyn, Nana, Papa, Cindy, Jim, Laelle, Ann Marie, Tiffany, Megan, Dr. Ahuja, Steve (RN), Dave, Katie and baby Anna! Some of you may have seen these already on Facebook, but for those of you who haven't...ENJOY! :)

Thanks again for all of the support that you have shown us, it means a lot to us!

Such is the life of a Hemophiliac!

2011-08-19T16:27:00.000-07:00

So, I don't have any "concrete" schedule yet, but.....it's been decided that we WILL go forward with surgery, but not until we go back to Cincinnati for a full surgical consult! We will be meeting with Jaime's surgeon, a plastic surgeon, GI, and hematology, as well as have a motility test done. OK, so why are we checking in with everybody? Well, Jaime's surgeon hasn't seen him since earlier this year, so I asked him to "eye-ball" Jaime to get a feel for what his incisional hernia is doing. We're consulting with Plastics, not so that Jaime can wear a Speedo without having a scar (tee, hee), but because Jaime's surgeon wants their opinion on how to construct the closure of Jaime's hernia. Jaime may or may not have some sort of connective tissue disorder, we're hoping plastics can shed some light on this for us. The suspicion comes from the fact that Jaime reherniated within months of being repaired...additionally, got an incisional hernia within weeks of being closed. Then, on the latest CT and x-ray, Jaime's current diaphragmatic hernia repair is starting to have changes, but from what I'm told, still looks in tact at the moment. All of this simply isn't "normal" considering all the precautions that were taken to repair Jaime appropriately. We'll consult with GI just simply to follow up from our July visits and have them arrange our motility test. This will test basically how fast food is moving through Jaime's digestive track. Finally, we'll meet with hematology. The surgeon said that Jaime will be hospitalized for 3 to 5 days post-op (baring any issues), but will need to have IV Factor Infusions daily, if not multiple times a day for at least 2 weeks post-op at home. Hence my title of this post!
This is a GREAT time to remind everyone that the Annual Hemophilia Walk is fast-approaching! It will be here NEXT WEEK! We need your help now more than ever! If Jaime didn't have hemophilia, his surgery and post-op risks would significantly decrease! The only way to find a cure, or better way to maintain normalcy in a hemophiliac is with YOUR HELP! Please take a look at the options below to see how you can help today! Remember no donation, is too small. (Even $1 goes along way...especially if EVERYONE donated just $1!)

1) You may donate in person or online at our Team Website.http://my.e2rm.com/TeamPage.aspx?langPref=%3FEventID%3D71091&LangPref=en-CA&TeamID=216534

2) You can participate in our Thirty-One Product Fundraiser. Everything is 15% off this month. The consultant has offered to match the hostess benefits and donate that money to our team. Check out the NEW FALL Products, GREAT for Back-to-School or to start stocking up on Christmas Gifts, especially at 15% off...you can't be that! Follow the link to view the items. Orders can be made online or in person through Wednesday, August 24, 2011. I have order forms available for your convenience, let me know if you'd like one. http://www.mythirtyone.com/shop/eventhome.aspx?eventId=E843088&from=MYEVENTS

3) Raffle tickets $5 a piece or 5 for $20 for a $200 Best Buy Gift Card. A great deal and a great way to help our cause! How many would YOU like?

Again, I do hope that you will help our cause, just as we have helped many others! Remember that all donations are tax deductible...and Don't forget to ask your friends and family to help this very important cause! Our team goal is $2000, we're half-way there!

Jared and Jaime thank you for all of the support you've shown them!

Surgery?!?

2011-08-16T16:22:00.000-07:00

So a quick update...I've been in touch with Jaime's surgeon and GI dr. in Cincinnati a lot over the last two weeks. We have collectively decided to do some further bowel testing which may include Jaime taking yet another trip to the OR. Jaime's surgeon is talking about fixing Jaime's incisional hernia sooner rather than later, for a number of reasons. Jaime continues to have bowel issues. He's GREAT when we have him on purees and takes a combination of laxatives daily, however we can not advance his diet because then he starts to have bowel issues. Now, many, including Jaime's GI are actually OK with Jaime hanging out eating purees, but at 28 months old (TODAY), he should be tolerating diet advancement. My fear is that if we continue on this pureed diet, we will miss our window of opportunity to teach him to eat normally, thus leaving us with even more significant feeding issues (eventually leading to a g-tube). I just think his bowel issues are crazy. Jaime's surgeon did shed some light on another issue that can be leading to Jaime's troubles, but it's a structural/functional bowel issue, one that we most likely can not fix. Having said all of that...we're working in coordination with Jaime's surgeon to do another round of tests and a trip to the OR with plastic surgery and hem/occ involved. I'll let you know more as things develop!
As a quick therapy update...Jaime's speech therapist was here and has told us that Jaime is mashing his food up with his tongue and roof of his mouth, rather than chewing food. She's putting him back on a weekly schedule, especially in hopes that we can advance his diet. Additionally, she said his speech is "coming along." Not where we want him yet, but he's getting there. He's quite the little parrot...or at the very least tries to be! I love his silly little phrases, they're so cute! As for PT, well, we still have ourselves a toe walker...and there's not a whole lot we can do. The orthotics don't work because they bruise him too badly (stupid hemophilia). PT will be back to at least twice a month at home and once a month at the early intervention school. From an OT standpoint, Jaime has regressed. So, that's the theme of this post, really. She'll be back to twice a month, as well and once a month with EI.
So, that's the latest! Again, I'll keep everyone posted as things develop and get closer to us going to Cincinnati. While this is a bit stressful-trying to figure out the details and timing of things with Jared and Tom going back to school and me working now-and disappointing-that my baby has to go back to the OR again...I have FULL confidence in Jaime's surgeon, he's amazing and we are so thrilled to have him part of Jaime's (and our) lives!

Just another reminder, we're still accepting donations for the Annual Hemophilia Walk, check the post below for three different ways that YOU can help! THANK YOU!

Calling All Supporters....

2011-08-14T09:29:00.000-07:00

Hello All,

It's that time of year again....fundraising time for The Annual Hemophilia Walk to be held on Saturday, August 27th, 2011. This year we are offering several different, fun and easy ways for you to support the boys' team, Jared & Jaime's Afterburners, as well as potentially get a little something in return. As you all know Jared and Jaime have Hemophilia A. Jared was diagnosed at age 3 1/2 and Jaime was diagnosed in-utero. This is a life-long bleeding disorder, at this time there is no cure and the treatment is extremely expensive. Jared and Jaime get IV Medications to treat their hemophilia, whether they are bruises, vaccines, cuts...surgeries (for Jaime), dentist visits...and so on. Each IV dose of medication, called Factor, costs thousands of dollars. We've seen it as high as $8000 for just ONE dose for Jared. We need your help for several reasons, but the two main ones are to search for a cure and to make it cost effective for patients living with hemophilia.
Having said all of that, I'm excited to present to you this year's fundraising options!

1) You may donate in person or online at our Team Website. There you may also sign up to join our Walk team and can start collecting donations online or in person from your friends and family. http://my.e2rm.com/TeamPage.aspx?langPref=%3FEventID%3D71091&LangPref=en-CA&TeamID=216534

2) You can participate in our Thirty-One Product Fundraiser. Everything is 15% off this month. The consultant has offered to match the hostess benefits and donate that money to our team. The more you buy the more our team gets! Additionally, we are holding a drawing for the hostess benefits earned from this event. Tickets are $5 a piece or 5 tickets for $20. Again, the more items bought, the greater the hostess benefits will be, so tell your friends and family to participate, too! This drawing will be held on August 24th, 2011. Follow the link to view the items. Orders can be made online or in person. I have order forms for your convenience, let me know if you'd like one. http://www.mythirtyone.com/shop/eventhome.aspx?eventId=E843088&from=MYEVENTS

3) If you're not into Thirty-One, but would still like to donate and are interested in potentially getting something in return....you can choose option 3. The Northern Ohio Hemophilia Chapter is hosting their own private raffle, this is for a $200 Best Buy Gift Card. Tickets are $5 a piece or 5 for $20. A great deal and a great way to help our cause! The drawing will be held at the Walk on August 27th, 2011, winners do not need to be present to win! I have 100 tickets to sell, let me know how many you'd like! :)

Feel free to hand deliver, mail or PayPal all donations to me. Email me for additional contact info if you don't have it already! ;)

Remember ALL donations are tax deductible! I hope that you will be able to support our Hemophilia Walk Team this year! No donation is too small!
As always, we thank you for all of the support you have shown our family!

Kind Regards,

Sheryl

August....ALREADY?

2011-08-07T20:08:00.000-07:00

As usual, much has happened since my last post. I can't believe I let yet another month go by without posting....bad mommy!
Here's the latest scoop....The high calorie formula prescribed in Cincinnati in late June was a bust. Jaime didn't tolerate it at all. So, we went back to our old Pediasure standby...in which Jaime has grown to love! (Just wish it would love to make him grow.) Speaking of growing, he hasn't gained a single pound since Cincinnati, in fact he's been a yo-yo up a few ounces, down a few ounces, ultimately, he's 6 ounces less than he was while in Cincinnati. He continues to have significant bowel issues. He's been on and off O2 just to have a bowel movement, it's very sad to watch. I've called Cincinnati several times since our visit relaying all of this to them. The last update I got from them was that the GI wanted to speak to the surgeon to see if there was any other pertinent tests that should be done, whether they be in or out or the OR. I still haven't heard a final decision on that, I'll share the news once I do. In the midst of all of this, Jaime completely stopped eating. We couldn't figure out why, I was totally thinking it was his stomach, turns out somewhere along the lines, he had yet another case of tonsillitis, this time with sores in his throat, too which could have been a case of hand, foot and mouth, but he didn't have a single sore anywhere else. He's all better now, though! :)
OK, enough about medical stuff for a minute...it's SUMMER, let's talk about summer things....like trips! We have been on TWO trips since my last post! First we had the unique opportunity to attend the Annual CDH Conference hosted by Breath of Hope, Inc., in St. Louis, MO. There were so many amazing things about that trip! We got to meet several CDH families...all of whom I hope will continue to be part of our lives for years to come! :) We also got to stay at Tom's Aunt's house in St. Louis while attending the conference (thank you, Elaine). If that wasn't neat enough, we picked up Tom's parents in Indiana to come with us, so we got to visit with almost all of the Trost's while we were in St. Louis! (We were missing my brother-in-law and Fam, as they live in California and weren't able to come that week!) While in St. Louis, Tom and I celebrated our 9th wedding anniversary and enjoyed a home cooked meal with family. We couldn't have asked for a nicer evening...except for the fact that Jaime had one of his desat/pooping episodes. (We literally contemplated a trip to the ER because it was so bad.) But, in the end, all was well. Then, on our drive back to Indiana, we got to go to Legoland in Chicago where we met up with Tom's Aunt Lois and Uncle AJ. (It was their first time meeting Jaime!) We had soooooo much fun on that trip! We really enjoyed our Epic Trip of 2011...I think we're always going to have a summer Epic adventure, the boys really travel well now for the most part!
The following is a slide show of our Indiana, St. Louis, Illinois trip! Enjoy the pics!

Trip #2 happened just this past Wednesday when we decided to go visit my parents in Maryland. It was Jaime's first trip to Grammy & Poppy's house....and I think he LOVED it! My mom is an amazing cook, I was THRILLED to be back in Maryland, as we haven't been in there in over 3 years (pre-Jaime). I was feeling crummy the day we left, I actually went to urgent care that day and was diagnosed with strep, when we got to my parent's house, my mom had homemade wedding soup on the stove waiting for me! YAY!!!! My mom's food was soooooo delicious that BOTH of my boys (as well as Tom and I) ate very well! Jaime was a little piggy! I'm thinking we need to go to Maryland once a month to fill that boy up, he'd put on some calories for sure! There's just something about Grammy's cooking! Mmmmmmmm!!!!! =) While we were in Maryland, my father took us to the National Air and Space Museum, I don't know who liked it more, Jared or Jaime. Both boys had a blast! Then, we went to the Fire Truck Museum...it was sooooo cool! Jared got to ring the old fire alarms and learn about how things worked pre-911. Jaime was able to wear some firemen gear and looked super cute! It was really fun! In the midst of all of that, Grammy took Jared school shopping! He, of course, hated it, but was able to get some awesome deals and is ready for school to begin on August 25th. I was even able to get a jacket, yes, folks that right, I got a jacket! I LOVE it, my mom helped me pick it out! (Thanks, mom!) I can't wait to wear it! Who would have thought that I, the queen of no jackets all winter long, would say that? Anyway, that was a really fun trip, Tom and I were very glad we were able to visit and are thinking it may be pretty fun to go there for Christmas! (What do ya say, Mom & Dad? Christmas in Maryland?!?)
Below you will find just some of the many pics we took over the last few days in Maryland. We just got back a few hours ago and we're ready to start our work week, well, I am, Tom's off another week or two yet! ;)
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Well, my friends, it's getting late and I have to work in the morning, I'll close with a reminder that the Annual Hemophilia Walk is just around the corner. It's on Saturday, August 27th, 2011. I need all Team Walkers to sign up and share your T-shirt size with me, ASAP. I need to have all t-shirt sizes in by Tuesday, my sister has come up with another amazing design for our team shirts, we have to get them ordered THIS WEDNESDAY to get them by Walk Day. I don't want anyone on the team to miss out on getting these unique shirts! For those of you unable to walk, we are collecting donations as well! We'd like our team to raise $2000, so far we have raised a total of $660. This year our team will be called Jared and Jaime's Afterburners, with a tagline of "boosting into action." All Jared's idea and we LOVE it! The following link will take you to our team page where you can sign up to Walk or Donate! I do help you'll be able to support us this year! http://my.e2rm.com/TeamPage.aspx?langPref=%3FEventID%3D71091&LangPref=en-CA&TeamID=216534 Thank you in advance!!!!

Day #1 on High Cal....XXX!!!

2011-07-01T20:17:00.001-07:00

So, Jaime's officially not a fan of his high cal formula. He hasn't finished a whole box of it yet. He drank 4 oz last night and about 6 oz all day. He's supposed to drink 24oz. By dinner time he was throwing up. UGH! The drs. really wanted us to give it to him at full strength, but unfortunately, Jaime's little body has other plans! :( There was discussion about conducting a stomach emptying test, I think I'm going to ask Jaime's drs. to do that here. We can't have Jaime drinking just to end up losing it all. He had some water this evening and by tonight I gave his old standby, Pediasure!
Other than the formula ordeal, we had minimal excitement in the ER. Jaime only got 2 IV sticks to place his IV today. I asked the dr. to have the nurses place a line rather than just infuse Jaime. She knows me and agreed that I could take care of Jaime at home. They put the line in and I infused him. The nurses were all in the room watching me...it was the first time they had ever seen Factor being infused, yep, that's exactly how rare hemophilia is. The IV flushed well tonight before Jaime's bed time, I'm hoping it stays in so that we don't have to go back to the ER for another one! Just TWO MORE DAYS! ;)
Another place we went today was the pediatrician. Jared had his "well visit" today. He's 69lbs and 51 inches tall! That translates to 85-90% for weight and 60% for height! I laughed and told his pediatrician that we're not used to seeing such high percents. Jared's usually around 50% and Jaime, well, we're lucky if he's 20%. Jared's vision is slightly off....the left eye more than the right. It's something that we're going to have watch. On a random note...the boys' pediatrician told me that she had all of Jaime's results that were in from Cincinnati. WOW! That was super fast! See, that's why we love Cincinnati! :)
In other news....just to add to a bizarre week, my mom hurt her finger. I took her to Urgent Care this evening (and her friend met us up there). Turns out she has a "mallet finger" and needs to see a hand specialist. It's currently splinted.

After Urgent Care, we had to meet Jaime's social worker because as of today they are required to see their patients within 3 days of discharge. We love her, so we don't mind, it was just another weird thing to add to our week! The best part was where we met her there was an AT&T Store...Jaime was FREAKING OUT! It was super cute...and yes, I've got pics! See below! That boy and his AT&T fascination! I'm going to call AT&T and have them use him as their new official spokesman! He LOVES it! :)

I'll conclude with positive thoughts that the IV stays functional so that Jaime doesn't get anymore pokes! He's already had 20 needle pokes in 5 days, I think he's good for a while!
Until next time!

Cincy Update-the LONG Version!

2011-06-30T17:44:00.001-07:00

Wow, where to start? OK, let's go back to Tuesday! Jaime started his day very early with a CT of his Chest under anesthesia. During which time he received EIGHT pokes to start an IV that he had in him for literally 20 minutes. :( He woke up pretty hysterical, but calmed down about 30 minutes later. We went back to the hotel, then met up with The Glahn's, another family with a CDH little guy who was in the RCNIC.

LCDH Ethan & Jaime at Skyline Chili

We had lunch with them, it was really great to see them. After lunch, we headed back to the hotel where we met up with one of Jaime's primary nurses, Jaime.

Jaime & Jaime.

She was pretty awesome....and it was totally by coincidence that we were all in the same area at the same time! :) After her visit we headed back to the hospital where we had our pulmonary appointment.
After lots of discussion about Jaime's history, we looked at the CT together. The CT showed that Jaime has a generous size right lung, however only about 20-30% of it is actually functional. It was much less than we had all hoped it would be. There were some areas that looked like they were slightly damaged, on both sides as well. Additionally, it was noted that the diaphragm area on the right side was slightly elevated, something that will be watched with chest x-rays for reherniation. Yep, I said the "R" word. They are all thinking it's probably from Jaime's inscisional hernia pushing things up, but nonetheless, something that needs to be watched! (UGH)
After the pulmonary appointment, we met up with Carrie and Carter Adler (Jaime's NICU buddy).

Jaime and Carter

Carrie drove over an hour away to have dinner with us! Thanks, Carrie! We had a lot of fun, it was neat to see the boys together and to hang out with someone who "gets it." After dinner, we went to the Luken's house. Bev had a pedicure scheduled, so I went with her...we both have some purty toes! :) (Thanks, Bev, that was a super fun night!) Tom and Jaime stayed at Bev's with Albert and Anna! I think they wore Jaime out....thanks, Anna!

Jaime & Anna

Wednesday was a whole new day of interesting news; it was OR day. We got to the hospital just after 7:00 A.M. where we were ushered back to the pre-op room and greeted by the hemophilia team and IV team....as well as our OR nurse. Jaime got 2 more needle pricks (if you're counting, that's a total of 13 in 3 days...there were more to come!) He received 2 doses of Advate (IV Factor medication) prior to entering the OR. Once ready, I carried him into the OR sedation room, where I held him until he went to sleep....that took like 30 seconds! I HATE leaving my sedated baby behind! You'd think after all of his trips to the OR it would get easier, I think it just gets harder as he gets bigger and becomes more aware! :(

Dropping off my baby in the OR.

After about 36 minutes, they were calling us to the consultation room. There we met up with the ENT and Pulm. Teams. We were told that Jaime still has pretty significant tracheal malacia which is most likely the main culprit to his respiratory issues and that they were unclear as to whether or not Jaime has a narrowed airway below that. Below that his middle right bronchial narrows (he's always had this, too). These things will never go away and will most likely cause issues on and off throughout his life. ENT told us that his tonsils are big, obstructing about 20-30% of his airway, but if they remain large with no issues, he won't have to have a tonsillectomy! :) Everything else looked good. They did biopsies of his nose and lungs, as well as labs while in the OR (2 more pokes) to check on a few other things...we won't know those results for a while.
We went back out into the waiting room, then we were called back by the GI dr. He told us that Jaime's esophagus down to the top of his intestines looked good. He did have bumps in his stomach that the dr. thought may just be incidental and lymph nodes, but he biopsied them to make sure it was nothing serious. Again, we won't have those results for a while.
Jaime went to PACU, we got to see him fairly quickly. He recovered VERY WELL! :) After a few hours, Jaime was taken up to his hospital room where he was admitted over night. Later in the afternoon, Jaime had the "pleasure" of having a barium enema! This is the test that we found out today when we followed up in GI/Feeding Clinic showed a distended colon. We were told that Jaime's colon was basically a "man-size" colon. He is very stretched causing large build ups of stool. This is from his chronic constipation and lack of proper hydration. We are going to give him medication for this in hopes that it helps. I asked how long it will take to improve and the answer we were given was it took years to get like this, it will take years to get back to a "normal" size. If the meds don't work, we may have to consult with a colorectal surgeon to learn how to arrogate his colon daily. Additionally, they have changed Jaime's formula to Boost 1.5 calorie with Fiber, he is to have 3 boxes a day and 8 ounces of water. Anything above that is extra calories for him. Hopefully this will calm things down and start to help, but it's a long process and it won't happen over night. It will take months to see changes! :(

Feeling better after fluids and a bath, post-op.

Other than that, we met with high risk who basically recapped everything for us. The dr. is still pretty concerned about Jaime's significantly sunken in pectus which we're going to closely watch...just in case intervention is needed. We also talked about play groups and toddler classes in which we were told to hold off on for now. It was better for us to wait until he was 3 to put him in the early intervention preschool. It's all about the risks outweighing the benefits. Also during today's appointments, Jaime was reweighed, today he was almost 27lbs, but that was "wet." Meaning he was on IV fluids, so it wasn't a dry weight. His height however was much different than the other day. He was physically placed on a board and measured, he was....drum roll please....35 inches tall! Yep, this is an accurate height with a head circumference of 19 inches. Dr. Haberman was pleased. We were kind of laughing because on any given day Jaime's weights were between 5-50%. Averaging around 20%. :) His height was 50% which is AWESOME and his head is above 50%!

At the Goasis an hr away from HOME! :)

I guess the sad part was his neonatologist gave us his discharge papers with diagnoses added instead of subtracted. I think he has a list close to 20! :( So, now we're home and we have to start the IV pokes all over again in the ER for the next 3 days so that Jaime can get his post-op Factor! Stupid hemophilia!
So, that's the long version. Any questions?

501st Post from Cincy

2011-06-27T19:07:00.000-07:00

WOW, it's been over a month since I've last posted-and this is my 501st post! So much has gone on. Jared completed the 2nd grade and turned 8. Tom and I both turned a year older and Jaime has had LOTS of digestive issues! Not to mention SUMMER is HERE!!!!! :)
So, here I am sitting in Newport, Kentucky writing a post from our hotel room. We spent 8 1/2 hours at the hospital today!
Here's the quick update....I say "quick" because it could be longer, but I'm whipped, so I'm going to touch upon the highlights!
Height roughly 33 inches, give or take! Weight, 26.4lbs.
FEES Study-NORMAL (a study where a fiber-optic camera is placed in the nostril and down the top of Jaime's throat-YES, he HATED it!)
Video Swallow Study-NORMAL He choked a bit during it, which is what he does a lot at home, the result of that was that he's not chewing properly and his gag reflex kicks in.
Then, we spent 4 1/2 hours in hematology where we ended up having a comprehensive visit. We met with the the nurses, educators, social worker, hematologist...and (my favorite)....a DENTIST! It came up that Jaime hadn't seen a dentist yet, so the hematologist had one come up to see Jaime. While he absolutely HATED it, we got relatively good news...other than some plaque, his teeth look good! :) We do, however, have to try to break the sippy cup habit, which for a kid with feeding issues, will be difficult, but he gave us some really good pointers! We also need to get in touch with a pediatric dentist at home. Oh and Jaime's has 4 more teeth to come in until he has a "full mouth!"
During the hematology visit we were able to get BOTH boys official Medical ID Alerts and we are setting up a home care team for Jaime to receive IV Factor at home. (I'm not up for messing with his tainted little veins yet.) He will be needing IV Factor post-op for several days. Also, we're getting some prophylactic factor for home and when we travel. Finally, we ended the appointment with 3 needle pokes for blood! While it was awful for Jaime to have to get poked 3 times, the nurses were really great with him. Jaime got the final draw from his foot...and it was the nurses first time doing a foot. Me being who I am, cheered her on and told her she could do it...hey whatever would work. Drawing from Jaime is like trying to get blood from a turnip! The following are just a handful of pics that we took over the last 24 hours.

On the road again!

Delirious baby who needs a nap!

Backyardigans on the iPod, works, too!

Chillin' @ Titi's House!

Our Columbus Pit stop!

Saying "bye-bye" to Face.
Am I in Dad?
By the looks of the skyline, we MUST be in Cincinnati!

Look what the ENT nurse made for Jaime before his FEES.
Yep, and a sticker, too! (Jaime is OBSESSED with AT&T)
It worked for the FEES, we took it to the swallow study.
Jaime on the phone with Jared on our way back to the hotel from Bev's house where we had a yummy cook-out! Thanks, Bev! :)

So, that's the our day! We get to start all over again tomorrow at 6:30 A.M. Good times! Although, in between appointments, we're looking forward to seeing more of our CDH Friends! Good Night, all!

Pulm/Cincy

2011-05-25T18:40:00.000-07:00

Quick Update: Mr. Jaime went to his pulmonary follow up appointment on Monday. He's doing amazing, as I posted in my last update. His pulm. was REALLY impressed with him! :) We have a follow up x-ray scheduled for mid-June. Lungs are clear for now though, best they've ever sounded! Woohoo! Again, thank you, Singulair! This medication truly has changed Jaime's quality of life for the better!
Having said all of that...Jaime has decided to stop drinking Pediasure as much as he has been. When Jaime was weighed on Monday, he was down to 25lbs 6 oz. DARN! I try so hard to feed that boy so he gains weight and all he's doing is losing weight...again! (Just to put things in perspective, Jaime's bathing suit in the pictures below is a 6/9mos taken in 2 in. on both sides, yep, a little peanut!) I called Cincinnati today to let them know...not sure they'll do anything at this point, but we'll be down there soon enough. Speaking of...our appointments got changed...again! So it looks like we'll be down there for a whole week at the end of June. In the meantime, we're going to do a sleep study here in Cleveland. Jaime's Cleveland pulm. really wants him to have one sooner than later, so we decided to do it up here and have the report sent down there!
As for Jared, he's totally fine now from his random hive and sinus infection from last week. Actually, by Sunday both boys were outside playing in the sprinkler for the first time this year! Jaime LOVED it...Jared did, too!
Here are a few pics of my boys being boys! :)Now if only we can get rid of these crazy storms, we could actually enjoy ourselves outside longer than an hour here and there!

Until next time folks!

We ♥ Singulair!

2011-05-21T21:09:00.000-07:00

So my last post stated that we had been to the pediatrician and that he had put Jaime on Singulair....all I can say is HOLY COW, that drug has made SUCH a difference. Prime example...today, Jaime played outside for a total of three hours. (Not all at once, of course, but we only took two breaks.) We were able to have so much fun. The other surprising thing...when Jaime did get worn out, he actually recognized it and he sat down and chalked for a bit. He never once was so out of breath that he needed a breathing treatment. He didn't even cough one single time! I soooooo wish we were able to give him this drug earlier.
Speaking of medications...Jared jumped on the medication band wagon this week, too. Thursday he got this random rash and hives all of the sudden at school. It was pretty bad, I actually had to pick him up and bring him home. Then, on Friday it had gotten worse, so we took him to the allergist. Lo and behold...it was NOT an allergy, rather it was an infection. WHAT? Apparently, Jared has a sinus infection, I have not witnessed any signs of such thing. The allergist said he wasn't surprised that Jared hasn't complained about feeling bad. Kids with bad allergies are so used to certain symptoms being "normal" that it doesn't phase them when they are sick. I was so sad to hear this...poor kid! Turns out with Jared having bad allergies and the sinus infection, this rash was his body's way of trying to fight off the infection. The most common area for hives with this infection is the face and neck...the very place Jared's started.
So, needless to say, we are a little pharmacy here. Jared is taking Augmentin (antibiotic), Orapred (steroid), Cortisone Ointment and Nasonex (allergy nasal spray). Jaime is taking Augmentin, Singulair, Flovent, Xopenex, Atrovent, Miralax, and Prevacid, he just finished his Orapred. And of course, both boys have their hemophilia meds as needed...Advate and Nasal Ointment for both...Stimate and Amicar for Jared. Yep, the Trost Pharmacy! Hey, whatever works to make my boys feel better! I'm thinking we're going to add another allergy medication for Jared once he's over this infection. We're going back in a few weeks to have him re-skin tested...and Jaime will be tested, too.
While the boys were on the mend, I finally crashed and burned yesterday! I got the stomach ick. I was down for the count....for 24 hours anyway! I was in bed for 17 of those hours! By mid morning today, I was feeling fine. I had my car fixed (finally....4 bad struts); the repair shop is just down the street from the airport, so I took Jared to watch the planes. Then, while Jaime was napping, Jared and I played outside. Once he woke up, we brought him out with us...and as I said, he did amazing! Tom had a wedding gig today and was gone most of the afternoon and he's still not home at the moment...so, it was just the boys and I for dinner. We got some Panera (I was still afraid to eat "real" food), so we ate soup and mac & cheese outside. It was a BEAUTIFUL evening to eat outside. Both boys really enjoyed that! After dinner we played tennis, then came in for showers! It was a great day! It's so nice to see both of my boys feeling good and able to play like "normal" brothers for a change! :)
Having said all of that....I got a few phone calls from Cincinnati this week. The first one said that they had to cancel a few of Jaime's tests, but not to worry because they were rescheduled for July 19th! Ummmm, NO! We'll be in St. Louis July 19th for the annual CDH Summit (I can't wait to go!!!). I asked why they needed to be rescheduled and was told that there was a scheduling "error" that these tests couldn't be done after anesthesia. The frustrating part...I TOLD the scheduler that she couldn't do that MONTHS ago! She assured me that it would be fine! Then, I told her that Jaime had pneumonia earlier this month. She said that she was going to have to talk to the nurse to see if Jaime could still go to the OR. After not hearing back from the nurse, I called her. I explained everything that had happened, but assured her that he was much better now. Well, per anesthesia protocol...one must be infection free, ie. pneumonia free for at least 4 to 6 wks. before going to the OR. Soooooo, the entire trip next week is CANCELED! :( I was told that they were going to try and schedule everything for the end of June, but I must say, I won't hold my breath...we were also told that we would be seen in March and that didn't happen either! It's not their fault that Jaime got sick, I'm just frustrated because we were down there in March and stuff could have been done when he was HEALTHY! Anyway, such is life in CDH World!
That's my update and I'm sticking to it! ;) Hope you enjoy the pics of the boys playing outside today...and enjoy the rest of your weekend!

Another "Lung" update

2011-05-18T17:59:00.000-07:00

Today, Jaime's lungs sounded....BETTER! :) He's still having coughing fits on and off and is very tired in general. Try telling him he needs to slow down, though! MAN! That boy is ACTIVE! Even his dr. said he looked wiped out...and that his Mommy did, too!
Having said that, the dr. didn't repeat Jaime's chest x-ray, instead after hearing the circumstances that led up to last week's admit, he put him on Singulair. He's thinking that Jaime has allergies (just like Jared, Tom and I) and that being outside when the pollen was high caused him to have an allergy induced asthma attack! TOTALLY makes sense because his "worst" coughing/junky days have been when the weather changes. As for the right middle lobe infiltrate...he's kind of thinking aspiration like I thought simply because he hasn't had a fever or any traditional symptoms of pneumonia. Of course, this is Jaime, he's probably reherniated and they're reading the x-ray wrong! (Wouldn't THAT be something?!?)
The dr. told us that the worst time to be outside is in the evening, that's when the pollens are at their highest. Of course, Jaime can't stand the heat during the day and that's when we usually take him out, so he suggested taking him out in the morning until it gets really hot. He said he hates to tell any parent to keep their kid inside and windows shut, but...that may be our reality until Jaime's more stable. Hence, the Singulair, we're praying it helps him...that combined with all of his other meds should help him become a pretty normal kid! :) (Pretty normal kid on 5 maintenance meds! OK, now that's weird.) Last bit of news to report, Jaime's back down to 26lbs even (and that's with clothes on). He was up to 26.14lbs. He's been having diarrhea from his antibiotics, I imagine that's why the weight loss occurred. On the plus side, he did eat ALMOST two chicken fingers from Arby's tonight! :)
That's all for now, my friends...please say a little pray that the Singulair works and Jaime can play more like a "normal" child...and that he continues to get better so that he goes to the OR on June 1st. Thank you!

X-Ray Update....

2011-05-16T16:55:00.001-07:00

Here's an interesting "story." I called Jaime's pulmonologist today to see if he wanted me to restart the steroids and put him on a taper down. I called because Jaime's lungs are still junky and he's still requiring more aerosols than I would like at this point. In calling I was asked what we were doing for the infiltrate. I said. "what infiltrate?" Apparently, Jaime has a right middle lobe infiltrate-that was the final read of his ER x-ray from last week. "An infiltrate is the filling of airspaces with fluid (pulmonary oedema), inflammatory exudates (white cells or pus, protein and immunological substances), or cells (malignant cells, red cells or haemorrhage) that fill a region of lung and increase the visual impression of increased soft tissue density." http://www.aic.cuhk.edu.hk/web8/Very%20BASIC%20CXR%20lungs.htm
This essentially means that Jaime has pneumonia. Now the biggest question is...is it bacterial pneumonia or is it aspiration pneumonia? Either could certainly be possible with Jaime. After telling the NP (nurse practitioner) that nothing was done for the infiltrate (as I was told his x-ray only showed streaking) she decided to put Jaime on a very strong, high dose antibiotic and to hold off on restarting the steroids for a few days. We're just trying to see if the antibiotics will help him before adding more steroids. We're due in for a follow up visit on Monday! In general, Jaime is OK...see....he and Jared are jumping around like silly boys!

He's great one minute and as I'm calling it "craps out" the next! I just want him well! I've had pneumonia a few times and it wiped me out, it was painful...I can not even begin to imagine the pain he must feel on a daily basis. And now to add pneumonia on top of chronic lung disease...man! I'm a bit frustrated that it's nearly a week later and I'm just learning of this news...and it was because I called THEM! Definitely a break down in communication! I do know that Jaime's pulmonologist is out of town and that the system was down that transferred x-rays from satellites to the main campus...but it's still disappointing.
Anyway, that's all I wanted to share today! Quite an update from yesterday...and yet it makes TOTAL sense!

It's been awhile, a lot has happened....

2011-05-15T10:27:00.000-07:00

Here's the short version:
1) Respiratory infection
2) Bilateral hand splints
3) Mother's Day
4) New PJ's from Grammy
5) First time in shorts
6) ER visit for Respiratory distress
7) Admit
8) Less frequent therapy visits
9) Lots of GI issues
10) Jared was sick!

The following is the long version of events the last few weeks:

Since Jaime's "well visit" he has gotten sick. He got an upper respiratory infection. He had a lot of congestion and was coughing. I took him to the pediatrician and he gave me a prescription for steroids, but told me not to start it unless Jaime got really bad. Well after a few days, he actually seemed better. Then, it started all over again.
I had a very nice Mother's Day, as the boys took me to brunch. It was a beautiful warm day and the food was DELICIOUS! It was that night that Jaime started getting bad again. We were back to the snotty nose, coughing, gagging, throwing up! UGH! I thought I would give him another day or two because he truly was better. I went to work on Monday, he was OK. He was very sleepy and still snotty. I worked on Tuesday...I got a call from Jaime's nurse saying that he threw up his lunch and seemed off. By the time I came home, he seemed OK. It was nice out and he wanted to play outside. (It was his first time wearing shorts this year!) So I took him out for a bit. It was about an hour after we came inside that things got ugly. his breathing went down hill, he was coughing a lot couldn't catch his breath. I gave him two breathing treatments and started his steroids. The treatments didn't make him better, I made the decision to take him to the ER.
Once there, Jaime received a continuous Albuterol/Atrovent treatment and got a chest x-ray. The x-ray just showed streaking in his lungs...as we would expect him to have, especially in the middle of an asthma attack. Well, the continuous treatment didn't initially work. once it was done, he was coughing and threw up. It was then that the ER dr. said she needed to transfer and admit him. Tom and I saw that coming, he really was bad. At one point the ER dr. said that if he doesn't get better soon, we were looking at an intubation! (breathing tube being put down Jaime's airway). An IV was inserted and steroids were given to him, FINALLY he was doing better. To be honest, I think he was so exhausted by the whole episode. The ER dr. called the Critical Transport team to get Jaime to take him down to CCF main campus. The team was AMAZING! :) We had 2 nurses and 2 paramedics on board. They were really great with Jaime and we were down there within 15 minutes.
Jaime spent the night in the hospital. He was given several different breathing treatments and 3 more doses of IV steroids. He was released the following day with 2 different types of nebulizer medications, 2 inhalers and 1 oral steroid. He is doing OK today, but he's still super snotty.
In the midst of all of that...he's still having several GI issues. If he's not constipated he's having diarrhea or he's throwing up. (I had the "pleasure" of being thrown up just this afternoon...EWEEEE!) Cincinnati is just 15 days away...I can not wait to go! We NEED answers and solutions as to how to "fix" his issues. He's still waking up a lot during the night, too...a bit less since I started warming Pediasure with cereal in it. (Thank God!) My fear now is that since he's been so unstable from a respiratory standpoint, that he may not be able to go to the OR. Jaime's Cleveland pulmonologist was going to be seeing Jaime's Cincinnati one at a conference, so he plans on discussing Jaime's case with him. We'll see what happens! Either way, we will be going because even if he's not well enough for the OR, he'll be OK for all of the other appointments.
To top last week off, Jared was sick. Well, Tom has been sick on and off, first with respiratory, then with GI stuff. Jared had the GI bug at the end of the week. He's totally fine now! :) Just wish Jaime was! :(
Other news to share is that Jaime's weight was 26.06lbs in the hospital and he's back to wearing bilateral thumb splints. His therapists said that he's doing so well that they are cutting back to maybe once a month. They talked about discharging him all together, but I asked them not to do that yet...not until we know what's going to happen in Cincinnati.
That's about all! Here are some pics from the last few weeks!

Kitchen Sink Bath, day 4 of being sick!

Mother's Day Brunch.

Homemade PJ's!

Smelling the lilacs

Playing outside in shorts!

CCF Admit.

Wanting to be discharged.

Home Sweet Home! :)

All dressed up for Family pics!
(Thanks, Aunt Janet for the adorable outfits!)

Happy that the pics were over!
(He was very naughty during them!)

Time to close, I have some cleaning and laundry to finish up while the monkey is sleeping! I'll try to be better about blogging so that they won't have to be this long in the future. The blog was actually down for maintenance for a few days, so that's why the delay in telling you all of Jaime's admit. (I've been giving updates via Facebook, so if you're not on my friends list and want to be, just "request" me! :)
Hope everyone has a great week! I'm hoping that the weather gets better, we've only had about 3 days of sun, the rest has been rain! We still have a leaky roof, the weather needs to stay nice so that the roofers can come and fix it, so I really, really want it to be sunny! (I'm tired of dumping out pales of rain from inside my house! ;(
To better days.....

Jaime's 2nd Birthday Celebration...

2011-04-25T16:23:00.000-07:00

We had a very busy weekend with lots of family in town! Jaime is doing GREAT! He went to the pediatrician for his 2 yr well check today...he weighed 25.5 lbs and is 33 in. tall. That puts him in just about the 20th percentile for his adjusted age! YAY!!!! Everything else checked out A-OK...I mean aside from his "chronic" issues! :)

Below is a slide show of pictures that we took at Jaime's birthday party on Saturday and the last one is actually a mini clip of Jaime receiving his first "bike." Thank you to everyone who attended, it was great seeing all of you. And thank you again to everyone who sent cards and presents, Jaime is enjoying all of his new things!

Hope everyone had a wonderful Easter....those pics will come at a later date! ;)

P.S. If you click on a pic it will take you to Picasa where you can view the pics larger! ;)

Only My Child...

2011-04-19T16:16:00.000-07:00

I had the pleasure of taking Jaime to the pediatrician today. This coming after a phone call to poison control last night. Here's the story...Jaime got into and spilled his non-toxic, environmentally-friendly medical adhesive remover. This is a product that we use to remove his monitor leads or tape/bandages because of his sensitive skin. Anyway, he spilled it all over his legs, arm and stomach. I cleaned him up and put him to bed. Yesterday morning he woke up with diarrhea...which I was assuming was from all of the Miralax...and his one thigh was a bit red. I again assumed it was from his diarrhea. By the time I came home from work, Jaime's legs, stomach and arm were flaming red and very tender. I was no longer thinking that the redness was from his diarrhea. (Hence the call to the poison control). Poison control told me that a rash could develop from the adhesive remover, but she wasn't sure that it was from it because of the delayed response and instructed me to call the pediatrician...I did. She called me back saying to dress the blisters and bring him in today.
So, this afternoon, I brought Jaime (and Jared, as he's off on spring break) to the pediatrician. She examined him and said that he has 2nd degree chemical burns (and one area of a 3rd degree burn) on his legs. CRAZY stuff, that's all I can say! There's no reason for that to have happened from that adhesive, but I can assure you that we will not be using it ever again. Here's a pic I took of Jaime at the peds....you can see the burn/blisters on his legs. The left one has "opened" tonight and the right one opened yesterday. The bad part is that the burned areas are rubbing against his diaper, so the bandages keep falling off. We are due back in to the pediatrician for Jaime's "well visit" on Monday, so she'll recheck his burns then. Oh and for those of you who are curious...Jaime was 25lbs today. I looked back at Jared's old records, he was 25lbs 9oz and 33 in. tall at 18 months old! So, Jaime's 6 months behind his bro! ;)

Egg Shells....

2011-04-17T18:47:00.001-07:00

As in constantly walking on them! ARGH! We are frequently reminded that Jaime isn't "normal," today was one of those days. Jaime once again had bowel issues. While "pushing" he started gagging and threw up. He actually does this a few times a week, it's very sad, but today all of the stress actually caused him to desat. I'm not sure how low he got as I was more worried about getting the O2 rather than the pulse ox, but I can tell you he looked HORRIBLE. I love purple, but I have to say, it's NOT a pretty color when it's on your child's face with blotchy areas of yellow. He went down fast, too. I ended up putting him on 1 liter of O2 for a while. He recovered within the hour. He sat and played Legos with Jared, then went down for a nap. Those "episodes" wear him out! I feel so bad for him. I hope that the folks in Cincy are able to help us with Jaime's bowel issues....they truly are affecting his daily life. It's so not fair. The other crazy part is that once I put the O2 on him (I had to fight him a bit to get it on, it's been a while since he's needed it), he never pulled it out. He touched it, but didn't pull at it...not until he was feeling better and completely back to normal. I often wonder if these kiddos just know what helps them and what they need because they're all OK with the tubes/wires. It's part of them! Here are some pics I took (when he had recovered). As stinky as all of this is, we are so incredibly lucky to be able to complain about the nuances of CDH, other families don't have such luck. So, we really are blessed to have him.

Wearing O2, starting to feel better, but not looking all that great.

Jared is so sweet when Jaime's not feeling well, he sits by his side, there to help or play! :) Wires/tubes/tanks....it's all just part of Jared's life, too!

Jaime telling me where his O2 is.

To go from feeling like garbage moments earlier to putting on a smile!
(Actually he was making his "monkey" face)

You can tell by the progression of the pics, as to how well the O2 worked! :) The good news is, by this evening Jaime was back to being himself (and had a few diaper changes, too). He even ate a little dinner and had a piece of ice cream cake before his bath. He was still pretty clingy, but overall, much happier.
Now the only thing left to do is call the O2 company tomorrow to have them send out more tanks. They took our concentrator a few months ago because insurance stopped paying for PRN (as needed) O2. We were left with just a few small tanks in which we pay 100% out-of-pocket for. Well, we've gone through just about all of them, so it's time to order more. We just never know when we're going to need O2, it's simply not safe to have nothing on hand. Plus, with summer and more traveling coming up...tanks are a MUST in this house!
Well, that is all to report! I was going to create a "1st year of life" post with pics recapping last year, but I decided to post this instead! Maybe I'll do a recap later this week! :)
Thanks to everyone for wearing RED today to show support and creating awareness for hemophilia. All of the support we receive is very humbling! Here are pics of Grammy & Poppy wearing red! Thank you! :)

Wishing everyone a great week! This is Jared's spring break, so my work will be a little weird this week, but it will be fun to be home with both boys! I hope the weather is nice...at least one day so that I can take the boys somewhere fun outside! We'll see! Here's to an uneventful week! :)

TWO!

2011-04-16T20:24:00.001-07:00

Happy 2nd Birthday to one of the happiest kids I know!

We love you, Jaime!

Just wanted to remind everyone that tomorrow, Sunday, April 17th is World Hemophilia Day, please wear your red in support of our boys! Thank you! And a BIG thank you to everyone for Jaime's birthday wishes, cards, emails, phone calls, Facebook messages, texts, presents and visits...all were so appreciated! How could he not smile when he's surrounded by so much love? You are all so great! Thank you!
Here are some pics that we took today as Jaime opened his presents and ate some birthday cake! You can click on any picture and it will take you to the Picasa Photo album so that you can view the pics larger! Enjoy!

T-1 week!

2011-04-09T06:01:00.000-07:00

One week from today Mr. Jaime will be TWO! I can't even believe it! Where has the time gone? Sometimes I think, did we REALLY have a NICU baby? That seems sooooooooo long ago and like it really didn't happen. Other times...we're reminded just how sick our little guy was!
Jaime's biggest issue is digestion....or lack thereof! He DOES eat, not a ton and not a lot of different textures, but he does eat. Jaime's biggest problem is that he doesn't digest his food. He will either throw up or he's so darn constipated that when he does "go" he needs help because it gets stuck! It's so gross and so not normal! The boy can have all of the Miralax, Milk of Mag and Glycerin suppositories in the world...nothing helps him. We've tried adjusting his foods...nope doesn't work. This is the very reason he doesn't take a lot of volume....he has no where to put it. Often times when he throws up, it will be several hours after eating and will still look like it did going in, completely undigested. I feel so bad for him.
Having said all of this, we have a big trip coming up next month to Cincinnati where Jaime's digestive system will be looked at very closely, along with his lungs. We will HOPEFULLY come home from our week long trip with a plan that WORKS. Poor little Jaime is so miserable sometimes. He's been really clingy the last few days and of course, not sleeping, all because of his digestion.
In other Jaime news...we haven't seen his therapists for a few weeks because they had to "discharge" Jaime when we went to Cincinnati. Anyway, PT and OT were here on Thursday...Jaime had "new" things to show each of them. In the way of PT, Jaime was showing off his awesome stair-climbing skills...he's doing this very well and most importantly SAFELY! :) He also showed her how he's toe walking again...ARGH! None of us are sure why he's doing this again. I'm not sure we're going to do much about it other than stretch his ankles because the leg braces bruise him too much because of his hemophilia. Now as for OT...Jaime has started tucking BOTH of his thumbs in. He was only doing this with the right hand before, now we're seeing it frequently in BOTH hands. So, Jaime will soon be sporting TWO thumb sprints. We're going to remeasure him and order two new ones, so it will take a few weeks, but we'll be using them again. We still use the right one, but he's starting to ever so slightly grow out of it, plus we're going to order "vented" ones which will be much better in the warmer temps! (If it ever gets warm here! HA!)
Other than hitting his terrible twos....all is well. Frequent words heard in our house are "no" and "mine." Usually followed by some sort of "hitting." And Jaime has been seen having temper tantrums. He's so little which is kind of funny to see him throw himself on the ground, but we try not to let him get away with....much! ;)
Something exciting that has happened...Jaime got his first "real" Lego set...OK, Lego Duplo, but still! Jared and I had the unique opportunity to go to the grand opening of the first Lego Store in Northeast Ohio yesterday. Each boy got a Lego set (of course) and Jared got to help a Lego Master Builder create an eight foot tall R2-D2. He had so much fun! I have LOTS of pics to share (if you haven't checked them out on Facebook yet, I put them on Jared's blog), but here are a few of Jaime playing with his first set...a Winnie the Pooh set....and Jared training Jaime to be a brick master! ;)

This pic cracks me up, Jared was literally saying "now Jaime..." telling him how to make the Legos stay together better! HA!

Just to put Jaime's size into perspective...Jaime's wearing his 12 month overalls that he got for his birthday last year! HA! My little peanut...everyone keeps asking what "size" is he and what to buy him for his birthday...I don't even know because shorts will certainly be different than pants! I'm sure he'll be wearing 9mos/12mos shorts. That's OK, we get a lot of wear out of our clothes! :)
Don't forget to check out Jared's Blog to view all of the pics that we took yesterday at the Lego Store Grand Opening! http://jaredtrost.blogspot.com/2011/04/lego-store.html
Have a nice weekend!

CDH Awareness Day, 2011

2011-04-01T11:13:00.000-07:00

Thanks to EVERYONE who wore turquoise yesterday in support of Jaime and the entire CDH Community! We all truly appreciate your efforts! Happy April....Jaime's SECOND birthday is just TWO WEEKS away...I can't believe it! :)

CDH AWARENESS DAY-TOMORROW (Thursday)

2011-03-30T17:35:00.001-07:00

Just wanted to remind everyone to wear your turquoise tomorrow (March 31st) to show support for all of those affected by Congenital Diaphragmatic Hernia, also known as CDH!
In wearing your turquoise tomorrow, please tell someone a fact about this awful birth defect. Some facts are as follows:

These facts are taken directly off of t-shirts that I actually own and that you, too, can purchase from the following link: http://www.cafepress.com/+cdh_awareness_tshirt_with_facts,404909348.
I hope that you will support CDH Awareness by sporting your turquoise tomorrow. If you are able and willing, you may also make a donation in Jaime's honor to Breath of Hope, Inc-just one of the few amazing CDH organizations that support research and spread awareness. Not to mention this organization has been there on this journey with us from the beginning supporting us along the way! :) The following link will take you to their website in which you can make your online donation! http://breathofhopeinc.com/

This is what CDH looks like...and this is why we wear turquoise.

Thank you in advance for your continued love and support!

Will YOU be sporting YOUR Turquoise?!?

2011-03-27T07:46:00.000-07:00

This photo was taken at Jared's ice skating competition last night...I put it up to remind you all to wear your turquoise on Thursday, March 31st in support of all those affected by Congenital Diaphragmatic Hernia (CDH). There are several babies fighting for their lives all over the world as I type, please keep them all in your thoughts and prayers...CDH is a horrible birth defect that can lead to many life-long complications. Spreading awareness is the first step in finding a cause and a cure! Thank you in advance for showing your support! :)

Please jump over to Jared's World Blog to see all of his pictures from his ice skating competition yesterday and his program. http://jaredtrost.blogspot.com/2011/03/and-winner-is.html

Heart Cath Pic

2011-03-19T15:09:00.000-07:00

I can't believe I forgot to share this. You know me and my pictures! This is a picture taken by Jaime's cardiologist during Jaime's heart cath. You can see his heart vessels because of the dye inserted during the cath. You'll notice that he has more blood flow going to his left lung rather than his right lung, this is very typical in CDH kids. (Of course it's more commonly seen reverse...more blood going to the right lung, rather than the left.) I'm just super fascinated by these OR pics...hence the reason I always ask the docs to take pics in the OR.

A quick update...I had to take Jared to the peds on Thursday for a random abdominal muscle bleed...don't ask...that boy and his hemophilia....anyway, we weighed Jaime...he was 24lbs 8oz on their scale. So, he's a yo-yo with weight. He was up to 26lbs at one point...not anymore. He's not eating good today, but such is life in CDH Land. I did take him outside for a few minutes, poor kid only lasts about 10 minutes before he starts having asthma issues. I wonder how our spring and summer will be with him and his asthma! Hmmm.....
Anyway, that's about all for now! Hope everyone is enjoying their weekend! Spring is just around the corner! :)

P.S. Just another reminder to wear turquoise on March 31st to show your support for Jaime and all of his earthly and heavenly CDH Friends! We all thank you!

Congenital Diaphragmatic Hernia - Unique Approach to Care

2011-03-17T21:11:00.000-07:00

I just HAD to share this with all of you! If you've ever wondered where our home away from home was or who we were seeing there....this mini video gives you some of those answers! This video is taken of a few CDH families and physicians in Cincinnati.
The neonatologist is Jaime's whom we still have visits with in high risk clinic while we are in Cincinnati. (In fact, I just called her today about Jaime's reflux medication!!!) We met her very early on while I was still pregnant and she was very upfront and honest about the journey we were about to embark upon with Jaime! She has been WONDERFUL!
The surgeon featured was not Jaime's "performing" surgeon, however, he WAS in the OR during Jaime's repair surgery consulting with Jaime's surgeon as Jaime's case wasn't a "typical" CDH case! He also spent many, many hours by our sides making decisions on how to proceed with Jaime's care. Additionally, he was the very man, woken up more than once in the middle of the night, to come in and assess Jaime! While we felt very guilty for seeing his smiling face that early, we are so GRATEFUL that he was there for Jaime...and us! :)
One of the families interviewed in the clip is one that we had the unique opportunity to meet (in the NICU halls) on Jaime's second NICU admit. Lee and Barbie are amazing parents of a sweet CDH Warrior, Robby! Thanks, Barbie for sharing this video with all of us and for spreading awareness about CDH!
Please pass this video along to spread awareness about this horrible birth defect...and don't forget to wear turquoise on March 31st! :)

Today was the first day since last fall that Jaime was able to play on his swing set, he absolutely LOVED it! :)

Finally to all of my Irish Family and Friends, and those who "celebrate"...Happy St. Patrick's Day!

P.S. For those of you who watch the video...at the end, it goes to an "up next" video, also taped at Cincinnati...featured in that story is a little boy and Cincy's Music Therapist, Brian! We spent lots of time with Brian, too! He helped Tom make CD's for Jaime of him reading and playing his instruments. Another awesome member of the Cincy Team! :)

Eye Dr/Ice Cream

2011-03-15T19:00:00.000-07:00

Jaime had his 6 month eye doctor appointment today. He did well. He still has his lazy left eye, the dr. said that it didn't look bad today, but he could definitely make Jaime's eye drift by doing different things. Having said that...he will most likely be needing an eye patch to correct it. He said it's a 50/50 chance of us using the patch, but he'd be leaning towards trying it in the future if it's not better in a few months. He also said that Jaime does have some vision loss on the left side. This may or may not get better with time. We have another appointment scheduled for 6 months...the ophthalmologist said that he'll monitor Jaime over a few visits to decide whether or not Jaime's vision is going to need intervention...ie, glasses-no surgery though, so that's good! :)

Who needs a spoon when you have hands?
(Ummm, yea, that's ice cream he's holding in his hand, brrr!!!)

Jared's FAVORITE, Vanilla Bean ice cream with crystal sprinkles!

Jaime moved by Jared, spoon still in hand, ice cream still in fingers and all over his face! HA!

In other Jaime news...he got his Synagis shots yesterday, we're still trying to determine if they will be his last ones ever....OR if he'll be getting shots next month. I'm not up on how RSV has been in our town, so I don't know for sure. I guess the state determines diagnosed cases and the need to give shots in April later in the month of March. Jaime shouldn't be receiving shots next year, as the typical treatment is through age 1 and possibly age 2 with chronic heart or lung issues. I'd LOVE to push it another year, but only time will tell if that will ACTUALLY happen. RSV in a kid who already has significant respiratory issues is super bad news, so we'll see if I can get him to get a third year, I mean he'll STILL be 2 during "flu/RSV" season next fall right?!?
The Synagis saga is to be continued.....

On a final note...the Synagis nurse weighed Jaime and said that he was 24.1lbs. I HOPE this is due to her scale being inaccurate as Jaime was 25.1 in Cincy last week! Funny story, while at the Cole Eye Institute, Jaime was in the "kid" waiting room with another toddler. Jaime pointed to him and said "baby." I said "no, he's probably the same age as you." (simply because he was bigger than Jaime. The boy's mom said no, that Jaime was probably older because he was talking much better. I asked how old he was, she said 14 months old. WOW! OK, sooooo, either he was HUGE for 14 months, or Jaime is TINY for almost 2. (He'll be 23 months tomorrow). Jaime's face looks older and he's talking a lot, actually, he's becoming a "parrot," but his body is so tiny. He has very tiny features! That's OK, he's super cute and that's all that matters! ;)

Boys will be boys! Silly boys in this case! Tee, hee!

Just a little note on Jared...he's been taking private ice skating lessons and doing well. He's in level 4-5 of classes, but he's doing level 6 "tricks" in his private lessons. He will be going to his first competition on March 26th. He's not doing a "giant" routine, it's more of a "skills" competition where everyone gets medals. It's a mini competition just to get the little kids familiar with the style of "real" competitions. He did very well during today's lesson. He was so excited with some of the things he was doing that he called me into the rink to watch him. I usually sit on the outside of the rink looking in, but this time I went right next to him on the rink. He's super cute! I'm glad he found something that he enjoys, especially in the winter. Can't wait for summer to get here so he can get outside swimming, playing tennis and going to hemophilia camp...he'd also like to play golf "just like Poppy" he says! We'll see how that goes! HA!
So, that's the latest on the boys!
Here's to Jaime's "23rd month birthday" tomorrow! Woohoo!!!!

P.S. Don't forget to sport your turquoise on March 31st in honor of CDH Awareness Day! If you do were turquoise, take pics and send them my way to make my annual CDH awareness day slide show! Thanks!

Cincy Pics.

2011-03-13T16:51:00.000-07:00

Here's a slideshow of pics we took in Cincy and some my sister sent us of Jared.

So, here's a Cincy recap...we left for Cincinnati on Tuesday after I worked and Jared had his ice skating lesson. Jaime was due to be at the hospital at 1:30 for a sedated echo. We spent Tuesday night at my sister's house...thanks, Titi. After some snacks with her we went to bed.
We left just before lunch on Wednesday to go to Cincinnati. We got to the cardiology floor about 1:20. The tech "tried" to do Jaime's echo without sedation...that just didn't go well. So, they decided to sedate him. Jaime got a shot because he doesn't do well with oral medicine. The shot made him "loopy," but it DIDN'T sedate him. After nearly 45 minutes, he was given a second shot. It took a while, but he FINALLY fell asleep. He got his echo which was great and an EKG, too. While sedated, the IV team came to put his IV in and draw his labs. After 4 unsuccessful attempts including in his hand and foot, the IV team "gave up." Jaime fell asleep for a few minutes. When he woke up he was flopping like a fish for hours post-sedation. He was so bad that the nurse had to pad his bed and he had to lay there until he FINALLY fell asleep. He woke up sometime around 9:00 P.M. When he was taken down for his chest x-ray. Tom stayed the night with him and I went to check-in to the hotel.
Thursday was a very early morning. I was up at the hospital around 7ish, anesthesia was in the room when I walked in. Jaime was sleepy, but awake. After hematology, anesthesia and cardiology came in pre-op to check Jaime out, he fell asleep. So, I took him to the OR asleep, anesthesia put the gas mask on him while I held him. He woke up a bit, then was out from the anesthesia. I laid him on the OR table and out we went. He was in there for a few hours, as they did the "normal" heart cath and a research study. Both came out NORMAL as I posted in my previous post.
Jaime went to PACU, for a few hours, then was aloud to come back to his room. He had to lay flat for 4 hours. I held him for a while, but then we put him in his bed. He woke up, played a bit (Bev came for a visit), then went back to sleep and woke up sometime around 11:00 PM, he and I rocked for a bit (I stayed at the hospital and Tom stayed at the hotel), he was a bit restless at night, but overall did great!
Jaime woke up Friday morning, sore. He was saying "boo-boo" and holding his leg. There was some confusion as to how to proceed with his IV Factor (hemophilia meds). It was changed late Thursday from every 12 hours to every 8 hours. There was talk of drawing labs, too. They actually tried to do this, but Jaime's IV was almost out, so the hematologist attending said to just give him his medicine and pull his IV. So, that's what happened. Then, we had to get all of the "sticky" stuff off of Jaime, his heart leads and his cath bandage. He HATED this! Cried the whole time. Then, we were discharged. We had lunch and stopped at the book store. Then went back to the hotel for Jaime to nap...which he didn't! After that, we went to the Luken's for dinner! We had a blast hanging out and eating pizza! (Thanks, Bev & Al for a fun night! Can't wait to see you guys again in the summer!)
We woke up Saturday morning and headed North to Columbus to get Jared! Thank you Titi and Mike for watching Jared for us! He had a really nice time...and he loved "living" with a dog! Tee, hee! We left Columbus and headed up to Cleveland...where we found snow on the ground, but dry roads the whole way home! Both boys got out of the car, walked in the house, took their coats off in the kitchen and went straight to their toy room! HA! After dinner Colleen and the kids came over! We all had a fun time...especially as Colleen and I were trying to pick out our stuff from my Thirty-One Catalog Party! By the way, it's still open until tomorrow if anyone would like to put their order in, let me know and I can email you the link! Thanks to all who have already purchased items, especially those who have purchased and donated the Caddies for the RCNIC in support of CDH Awareness.

All is back to normal here...Jaime has therapy tomorrow, an eye dr. appt on Tuesday and more therapy later in the week! Wishing everyone a nice week! Thank you for keeping Jaime in your thoughts and prayers...we are very pleased with how things turned out in Cincinnati. We're due back there in a few months for the areo-digestive clinic and airway work up!

Heart Cath!

2011-03-10T20:05:00.000-08:00

Just wanted to pop over to the blog to let everyone know that after an extremely long day yesterday (bad sedation side effects where Jaime was flopping like a fish for literally HOURS-even has some bruises to prove it and far too many needle pricks-6 yesterday and 3 today), Jaime had his heart cath today and did AWESOME! :) His cardiologist came in the room and said "do you want the good news, the good news or the good news first?"
His heart looks like a "perfect CDH" heart! Nothing unusual was found and Jaime has no pulmonary hypertension. He was also asked to be part of a research study and the "normal" findings from CDH kiddos weren't found in Jaime...which is AMAZING!!!!! He has no heart issues...just some diminished blood flow to the right lung which is completely normal in CDH kids. This is such great news...thank you everyone for the keeping Jaime in your thoughts and prayers...someone was listening today! (I will say that Jaime was saying "Goo-goo" a lot when he was waking up from Anesthesia...Jaime doesn't usually baby talk like that...so, we were thinking that "Goo-goo Grandma" may have had something to do with it! Thanks, Gram...Love you!)
Now the downside to this terrific news is that Jaime still has a lot of issues that need to be addressed, most of which are pointing towards Jaime having a bad airway. We know that he has a subglottic stenosis (significant narrowing in his upper airway) and trachealmalacia (basically a floppy airway). For those of you wanting to look it up...here are a few sites that talk about each issue. http://www.tracheostomy.com/resources/articles/subglottic_stenosis/index.htm and http://emedicine.medscape.com/article/1004463-overview. Having said that, we also know that Jaime has a small right lung, chronic lung disease and indeed does have diagnosed asthma. So everyone is thinking his respiratory infections, easy fatiguing and growth are directly related to his, for lack of a better term...crappy airway. We are supposed to follow up with the aero-digestive team down here in Cincinnati at some point. It just seems like they can't quite get all of the things aligned. Jaime will need lots of tests and a few procedures, we've been told that he has a whole laundry list of things to check out. Most are for "rule out" purposes only, but still they're on the list. Jaime's cardiologist jokingly said that he fell asleep reading the list...HA! I haven't seen it myself...I just heard the rumors about it! Tee, hee!
As for a quick weight update, Jaime is still just over 25lbs. (25.1) Not surprising...he was plumped up the last few months from his steroids. He's been off of oral steroids and just on inhaled ones, so he's just about back to baseline which means...no weight gain. He's tall though, about 33 1/2 inches. He's totally growing out of his 12month pants...even some 18 mos. pants...in length only, they totally fall off of him. I imagine once summer hits, that he'll be wearing 9/12mos bottoms again. He's such a little peanut...but a cute one! :)

Jaime this evening, several hours after his 4 hours of laying flat and after dinner!
He has an IV in his left hand and the "bow" on his shoulder is our make-shift back pack for his telemetry pack. (He's on a heart monitor and pulse ox right now). It's blurry, but you can just barely see the wires coming out from under his pj shirt.

As for Mr. Jared...he's having a good old time in Columbus with his Titi and Michael! I heard that they went to the library to get out paper airplane books. Michael also took Jared up to Titi's work and they bought her flowers, too! Today, they all went to the Lego Store...and yes, Jared got another new set!

Someone got a Lego railroad crossing set! Now he wants more Lego track and an RC Lego train!

He's having fun and behaving, too, from what I hear! Hopefully that will continue as we'll be in Cincy one more day. Jaime's hematologist switched his IV Factor doses from 12 hours to 8 hours, so we'll be hanging around the hospital tomorrow waiting for Factor doses and we'll need labs drawn with results back to see if we can leave! The hematologists just want to keep him safe after such an invasive procedure!
So, I'm sorry to say that I don't have more pics to post and that these are just from my cell phone. I have my camera (of course), but I don't have my camera cord to download my pics, so we'll have to wait until I get home to post some pics of Jaime's hospital stay. Jaime just fell asleep a little bit ago, so I, too am going to turn in. It was a busy day, Bev was up to visit late this afternoon and we had some of our old NICU friends visit (doctors and nurses), it was nice to see all of you! Being here is like the show "Cheers"....it stinks being in the hospital, but it makes it a whole lot easier...."where everybody knows your name....and they're always glad you came...." So, "Cheers" to yet another positive trip to the OR with our "friends"! :)

Toys!!!

2011-03-06T14:14:00.000-08:00

Last night Jared asked me if we could take his old Thomas the Train toys out of the attic, so this morning I did! They have provided HOURS of fun for BOTH of the boys! Of course, Jaime's favorite piece to play with is the Thomas the Train Emergency Room...guess it's the one he's most "familiar" with~ha! I hope you enjoy the slideshow of toys....I'm sure my parents and Tom's parents will be happy to see the boys enjoying these toys...(again for Jared and a first time for Jaime!) Oh and I've also included a few of Jared's recent Lego creations! For all of you locals, the Lego Store is coming to the Beachwood Mall, soon! Uh-Oh, we're all going to be in trouble! HA! They were hiring, I think I should put an app in for part-time! ;)

We still don't have final Cincy plans, yet, but we're preparing to leave just the same. Jaime's cath is scheduled for Thursday!!! Keep sending the positive thoughts our way! Thank you!

And don't forget to wear you turquoise and/or red for CDH/Hemophilia awareness month! I have turquoise nail polish on and have gotten a few compliments...it was the PERFECT opportunity (and an easy way) to share exactly WHY I had such a "wild" color on my nails! :)

Heart Cath!

2011-03-04T18:41:00.001-08:00

Well, it's officially been scheduled! Jaime will be having his heart cath on Thursday. It was a bit all of the sudden, we have lots to do to get ready, so this will be brief. Please keep Jaime in your thoughts and prayers as he, once again, goes back to the OR. Please keep his little CDH buddy Carter in your thoughts, too. He will be having a heart cath next week as well! The boys will be back in Cincy together again...though I'm not sure they'll actually see each other, but the same cardiologist will be caring for them both just the same!!! Thank you!

Big Boy practicing going up & down the stairs!

How do I look?

Ha, ha, Momma got me both the hat & the pinwheel! :)

Finally, just a reminder that March is both CDH Awareness Month (in particular, March 31st) and Hemophilia Awareness. Please wear your turquoise (CDH) or red (hemophilia) or both of them together and tell someone about these birth defects! The more people that know about them, brings us one step closer to cures for both of them! Jaime and Jared truly appreciate it!
Wish us luck this week! :)

Full Time Job!

2011-02-21T17:27:00.000-08:00

Once a mother has a child, she begins to realize that she has a new full time job. I have had the opportunity to have my full time mom job for nearly 8 years, while holding a part-time one at UH. Well my friends, I have been working overtime lately and it's not at UH, though it's oddly similar. So, I guess one can say that I'm bringing my work home with me!
What does all of this mean? Well, last week, Jaime had 3 appointments (in addition to his therapies) and Jared had one. Then, today Jared had another one. So, I've been a taxi driver to appointments all over the place...and none of the 5 appointments were in the same place. When I'm not playing hospital shuttle bus, I've been busy coordinating at least a week's worth of appointments and procedures in Cincinnati. And my final mom task in which dad helped with was creating a playroom for the boys! Don't get me wrong, I LOVE my full time mom job...I mean with a boss like this...who wouldn't?!?

So an update on appointments since his pulm one...Jaime went to the pediatrician for his Prevnar booster (pneumonia vaccine). He weighed 25lbs 2oz. Jared saw the pediatrician, too and he was diagnosed with reflux! He had it pretty bad as a baby, so I guess it's resurfacing. The next appointment was for Jaime...he had his hearing test and PASSED this time! Woohoo....thank God for ear tubes! He still has a bit of a delayed response, but overall did well!
Today's appointment was for Jared at the Hemophilia Treatment Center. He's 63lbs and is doing great. In spite of his joint bleeds, his range of motion measurements turned out great, actually much better than expected! :) He's also getting a few muscles which is making his veins better. We're aloud to play with his IV doses a bit. We can dose more when he's more active and less when he's not. To be honest, this is what I have been doing, but it was nice to hear it from the physician. Jared had some labs drawn today and they gave him his dose of IV factor in the clinic...pretty much a routine visit. We did talk about Jared playing some sports. The dr. said ice skating was great, as long as he's wearing a helmet (he is) and the PT said it's really good for strengthening his ankle joints (he's already had 2 ankle bleeds). This was also good to hear. It's one thing for them to say it's OK when he's 4 or 5, but now that he's advancing levels and taking private lessons...I wanted to make sure it was "safe." Now, hockey would be a whole different story! We were told not to let him do any contact sports, we were thinking soft ball again, but the dr. wasn't overly thrilled about that due to sliding into the bases since he's already had 2 hip bleeds. So, I think it will be swimming (this is a biggie amongst hemophiliacs) and tennis (as long as he's careful with his swing not to injure his shoulders). Wickliffe does allow for 8 year olds and up to golf...we'll see...I'm not sure Jared has the patience for that, but he may try it. Also a good one for hemophiliacs...as long as properly done! ;) The last thing we talked about was sending Jared to Michigan for hemophilia camp! He's really scared about it, but I think he'd LOVE it! I think he's more scared about being away from us for a week. Sign up for camp is coming soon, so we'll see! We also need to figure out what's up with Jaime...which brings me to my crazy phone calls.
It sure has been interesting trying to coordinate all of Jaime's appointments in Cincinnati. They now want him to go to the aero-digestive clinic (which consists of GI, pulm, ENT and a feeding team), in addition to the hemophilia treatment center, a sleep study, a heart cath and a bronchoscopy. Of course I spoke with a NP today who said that she'll be presenting Jaime's case on Wednesday to the team and they will decide what tests to do and when to do them. And yes, once again there was talk of Jaime's tonsils coming out. Also talk of GI and feeding taking lead on Jaime's case down there. It's all about the growth! Which brings me to my last item to mention...
Jaime STINKS at eating now! He's officially been off of steroids for over a week and his appetite sure is showing it. He's still a night time feeder with an average of 20oz a night, but during the day, we're lucky if we get 8oz of Pediasure in him. He just nibbles on things here and there and hardly drinks. I try to give him juice, milk and water. He will drink some apple juice, but only Juicy Juice brand apple juice and only sips...and he won't drink milk by itself, he will occasionally drink it mixed with Pediasure. He's been throwing up again at least once a day, too. Everyone told us the feeding would be the worst and they were soooooo right!
The final thing to share is that our flooded spare room is done and has been transformed into a playroom for the boys! I finally have a toy-free living room! It looks almost big in here! Now that the playroom is done and organized, on the agenda for tomorrow is to rearrange the living room! I have a feeling the garbage men won't be happy with us this week, but it's soooooo great to go through and finally get rid of things! Here's a pic of Jared at his new desk in the playroom!

Well, that's all for now...time to to get things ready for Jared for tomorrow...remember the full time job that never ends! ;) Wishing everyone a great week and for those of you hit by the latest storm...be safe!

Corned Beef Anyone?

2011-02-15T19:22:00.000-08:00

Just a funny post today! Jaime had an appointment at The Clinic with his pulmonologist. All is well....nothing exciting to report on their end! Anyway, after his appointment we went to Slyman's! For those of you non-Clevelanders....it's a place only open through lunch that serves gigantic sandwiches and it's in the heart of Cleveland. This is what the "sang-wiches" look like. Mine was a Reuben minus the sauerkraut.

See, I told you they were HUGE! And no, I didn't finish it! ;)
Well, while we were there standing in line (oh and there's ALWAYS a line) Jaime was watching the meat slicer. He was working his charm with all of the people in there...then the owner gave Jaime a HUGE pile of corned beef on a wax paper. Tom and I looked at each other and said..."why not?" I was so hoping and praying that he wouldn't gag, choke or throw up-you are literally arm to arm in that place. My little guy didn't embarrass us at all...he LOVED the corned beef. He was signing for more and saying "mmmmmm." Who knew? The owner of Slyman's did! Atta Boy, Jaime! :) He ate several slices, but it was so incredibly tender it pretty much melted in his mouth. Super easy for him to eat. And if you're going to eat corned beef, it may as well be from Slyman's! :)
Those of you not from Cleveland can view Slyman's website...but I'll warn you...the pics will make your mouth water! Tee, hee! http://www.slymans.com/
Here's a pic that Tom took of Jaime inside Slyman's...he was holding his wax paper full of corned beef...notice the giant smile on his face?!? Enjoy the pics...and if you're ever in Cleveland...stop by Slyman's...you won't be disappointed!

Before I go, I'd like to invite anyone in town to support Jared's youth group...tomorrow (Wednesday, February 16th, 2011). They are having a fundraiser at CiCi's Pizza in Mentor. Visit between 4 P.M. and 9 P.M., mention Trinity Lutheran Church and the youth group will receive 10% of the sales! It's that easy...I mean, after all, everyone needs to eat! Why not drop by Cici's and have some awesome mac & cheese pizza while supporting a great group?!? Hope to see you there!

Appointments....

2011-02-14T17:54:00.001-08:00

OK, so Jaime's "social" calendar is busier than mine!
This week he's due to go to the pulmonologist, pediatrician and ENT for a hearing test...along with all of his therapies. PHEW!

As for his Cincinnati tests....I've been talking to them a lot and it's been decided that Jaime will have his heart cath, bronchoscopy and sleep study in April. It will be either just before his birthday or just after! Happy 2nd Birthday, right? ARGH! It's for the best to get them all done and over with, plus we were trying to schedule them so that Tom won't miss too much work. My boss will work with me to make up my time and Jared's school is also aware that he'll probably be absent for a week. We'll see how it all pans out! They have 2 dates in mind to take Jaime to the OR...one works GREAT with Spring Breaks...the other...not so much! Fingers crossed that we get what we want! Keep in mind that we're trying to coordinate 4 drs.!

Before I'd go I just want to thank everyone for the Valentine cards and gifts that you all sent the boys! You are all too kind...those little guys are soooooooo S-P-O-I-L-E-D!!!

Valentine's Day 2010!
The boys with their Valentine's gifts...clearly one of them was eating chocolate before the picture was taken...HA! :)

Valentine's Day, 2011! Watching Disney Jr. My how far we've come! :)

Nothing else "exciting" to share...and I'd like to keep it that way~
Wishing everyone a lovely Valentine's Day...and for those of you who don't "celebrate" it Happy Monday! :)

Big News....

2011-02-10T17:30:00.000-08:00

Jaime is 25lbs 3oz AND he peed on the potty tonight, well sort of! (He started to go on the bathroom floor and finished on the potty! ;)

Jaime got his Synagis shots today, that's why he was weighed. He's still packing on the steroid weight, but I think this time it will stay! YEA! (For those of you who don't know, Synagis is a shot that preemies get (or kids with heart or lung diseases) to prevent RSV, a nasty respiratory virus.

Some latest news to tell about Jaime is that he got his Pencillin shot and it seems to have helped him. We are also in the process of setting up all of Jaime's appointments and tests in Cincinnati. He's going to have to see ENT, Pulmonary, Cardiology and Hematology so that he can have a sleep study, heart cath and another bronchoscopy. Hopefully that visit, which will most likely be a week long, will give us some answers in the end as to why Jaime keeps having respiratory infections and as to why he fatigues so easily.
The other news we found out is that Jaime's Prevnar Vaccine is low, so he needs to get a booster. All of the rest of his immunity tests came back NORMAL! Woohoo! The Prevnar vaccine is important as it helps prevent pneumonia. Since he had his penicillin shot last week and synagis today, I'm thinking he'll be getting that shot next week. Also scheduled for next week is his follow up hearing test and visit with the pulmonologist. Let's hope both of those appointments go well! We may be seeing the GI dr., too. Jaime's reflux is getting bad again. He won't take his Prevacid...he's eating more and drinking less during the day, but drinking all night long. His latest is waking up throwing up every morning. There is just no balance with this boy. We'll figure him out one way or another, though! :)
Here are some super cute photos of Jaime's new pj's courtesy of Grammy & Poppy for Valentine's Day! Thanks, G & P! Or as Jaime says, "unk-oo." (thank you) Yea, he's still pretty behind on speech, slowly but surely he's starting to repeat sounds, though. Enjoy the pics and if I'm not back on before Valentine's Day...hope it's a happy one! :)

Jaime seeing if any of his CDH friends are on the phone! ;)

Hi-ya!

Uh-oh, I got caught with Mommy's phone!

At least I look cute! :)

Before I go, I'd like to invite any local women to attend the 5th Annual Women’s Health Expo, Saturday, February 12, 2011 at Holiday Inn Express & Suites, LaMalfa in Mentor. Doors open at 8:30 a.m. This is where I'll be. We have a booth set up to promote our Bariatric Surgery Program at Geauga Medical Center. It's supposed to be a very nice and informative event and best of all it's free! Come on out and drop by my booth:)
Have a GREAT weekend!

HEALING AND HOPE

2011-02-04T19:24:00.000-08:00

The following is being sung by Jaime's nurse, Darlene's sister! This is very inspirational! I hope that you enjoy it as much as we do and as much as she did creating it! Feel free to pass it on as you see fit! :)

Shot....

2011-02-03T10:10:00.000-08:00

After 2 1/2 days of throwing up medication, I decided to matters into my own hands. (I know, so unlike me! HA!) I called Jaime's pulm. back to let the NP know that Jaime was not taking his medication and that I felt if he needed to be on antibiotics, they had to be IV or IM (shot). She said to keep pushing him getting them orally. NOOOOOOOO!!!! She's not the one cleaning up his vomit watching him cry when he gags which I am CERTAIN hurts his throat even more. I had once asked ENT if they did shots, she said they did not. So, yesterday I called Jaime's pediatrician and spoke with her nurse. She said to bring Jaime in today and we could decide what would be best for him. So, I took Jaime this morning. He had to have 3 breathing treatments during the night from coughing and desatting...yes, he's back on the monitor at night. Actually I always put him on the monitor when he's sick...especially while he's on so much medication, too. Anyway, the pediatrician was pleased with how well his lungs sounded-persistent aerosols-but his throat is still bad. His tonsils are still swollen with white "blisters" on them full of pus...YUCK! So, after some discussion the ped. and I decided that a Penicillin shot was our best option. So, she went to get it, when she came back in, Jaime said "Hi..." then saw the shot and said "Nooooooo!" and hit the dr. Naughty, naughty baby! ;) I put him on his tummy on the table and she put the shot in his little tush! He screamed, and was crying "muh buut, muh buut." and rubbing his bottom. We all felt bad for him, but it's way better than him throwing up and hurting his throat more and it will last up to 20 days! Since he got the antibiotic shot and his lungs sounded good, we're going to give him a break from his steroids, too. We're going to start them back up on Saturday. This way, the "effects" of having his Pediasure taste bad from antibiotics may go away some. He's good about taking his steroids, just not in combination with antibiotics.
Today's weigh in was 24.5lbs. The dr. said he's looking chubby...and he is, but that's all steroid weight. I just hope he doesn't turn into a chunky little boy because of all the steroids. I will say that his right-sided tummy "bulge" looks smaller because his tummy is so pouchy. Then you get beneath that to his teeny tiny little waist and bottom. He's still wearing a size 2-3 diaper. He still his tiny limbs, too. It's all good because regardless of size, he's still so stinking cute if I do say so myself! :)
The only other "excitement" we'll have today is Jaime's respiratory therapist is supposed to come. He's going to bring a new pulse ox probe...as they only last a few months and the more you use them the quicker they go out. He's also going to bring a whole new aerosol set up. I didn't realize, but I guess you're supposed to change that stuff over every 6 months, too. I'm using the mask we got from the hospital a few months ago. He said he's going to bring over a new dinosaur mask...exciting! Yes, it's the little things that are exciting around here! Tee, hee!
That's all for now!
P.S. The picture was taken of Jaime yesterday with my cell phone, that's why it's not great quality. He does smile on que now and this was proof...Jaime smile...cheese! :)

Broken....

2011-02-01T18:31:00.000-08:00

Who says you can't use apple sauce as hair gel?

So, I have a broken little boy and no one knows how to fix him! I know I just posted an AWESOME blog a few days ago...well, once the steroids and antibiotics wear off, we're always back to square one...broken! :(
Jaime was back to the pulmonologist today. We initially went for his wheezing and cough, but discovered that his tonsils are so swollen that they're touching each other and his uvula (that gross thing that hangs in the back of your throat). We were told that when he coughs it irritates his tonsils causing them to swell more, which then makes him cough more which in the end puts him in respiratory distress. It's just one vicious cycle. His left ear is also working on being infected, it's red and swollen, but the tubes are still in and working. No one knows for sure as to why he keeps having so many ENT issues. Jaime had an immunity panel drawn today. The NP told us that the final results would take at least a week to come back, if there was anything funky, she'd call. Otherwise we'll go over everything when we go back in two weeks.
In the meantime, Jaime is going back on steroids...he'll be on a big dose for 5 days, then a smaller dose every other day indefinitely. He is also going on a Z-pack which is a 5 day antibiotic...in addition to that, ENT is most likely going to put him on a 3 week dose of Penicillin. He is also to get breathing treatments (Xopenex) every 4 hours and Flovent (a maintenance inhaler) bumped up to 8 doses a day from 4. Something's gotta start to work for this boy. Jaime's pharmacist and I were talking tonight about how many antibiotics he's been on. When he's not on them, he gets sick, when he is on them, he's awesome. We're just worried about his liver and kidneys...you know as the antibiotics continue.
Having said that...Jaime just sees the medicine syringe and starts to gag. After Walgreens, we went through the drive-thru of Steak and Shake for milkshakes in the ice cold weather...we got Jaime (and Jared) banana milkshakes. Jaime had drank 1/2 of a jr. shake in the car. I'm sure it felt great on his throat...we were advised to try and give him super cold things for the swelling...he's not a fan of much cold, but this he LOVED! We get home with all of his new meds, I fill the syringe with his first dose of antibiotics, I put it near him...he gags and throws up all of the milkshake that he just drank. I'm sure that killed his throat. After he threw up, he went back to almost finishing it, but refused his medication. So, here we go again. I'm hoping that the ENT will allow him to get a Penicillin shot rather than medication, but we'll see. I just don't see how we can physically get all of this medication into him.
Anyway, that's the latest scoop! Here are some pics we took from the 12th floor of our hospital room today. Kind of an interesting view of Cleveland...mostly just the Cleveland Clinic Campus...that place is HUGE! :)

Before I go, I'll share Jaime's stats with you...He is get this...just slightly over 25lbs...that was taken fully dressed with a wet diaper, but the steroids make him "puffy" so I'm thinking it's pretty accurate. He was also measured at 33 1/2 inches tall. That explains why some of Christmas pants are "floods" on him! ;) His O2 sats were in the low 90's before his breathing treatment, but went up to 97% after. So, in the growth department, he's doing well. (OK, one positive to steroids...I just hope we don't see any crazy side effects down the road from them.)

Time to go...it's a chilly, icy one...for those of you affected by the storm, be safe! I'm thinking tomorrow is going to be a snow day again for Jared. Good night, all! :)

Life Support....REALLY?!?

2011-01-29T19:40:00.001-08:00

Not my child! Seriously there are some days I look at this little monkey and can not believe that he once was on life support, he didn't really do time in the NICU...did he?!? ;) Soooooo much has changed in nearly two years! While he still has his issues: respiratory, GI and growth, he never ceases to amaze me! Jaime has been feeling good the last couple of days...he's still wheezing and gets out of breath pretty quickly, and threw up this morning from saliva going down the wrong pipe (ewe,I know), but really, he's doing as well as to be expected....so well that he got to do this for the first time EVER! (I'm sorry for duplicating some of these for all of you Facebook friends, but I just HAD to share these photos with all of you!)

First time in a real snowsuit!
(It was Jared's 1st snowsuit and it's a size 12 months. Jared wore it at 6 mos. Jaime...21 1/2 months! Look Grammy it fits! :)
Jaime's thinking..."RALPHIE!!!!"

First time out in the snow! Physically touching it with his feet.
(We usually carry him in and out of places)

Trying to walk in the snow..and LOVING it!

First sled ride...WHEEEEE! :)

Prancing down the driveway!

Like I said, what life support? HA! As you can tell, Jaime enjoyed his 10-15 minutes outdoors today. It was in the 30's, so it wasn't super cold. In fact I was out just wearing my UH fleece. Jaime does like being outside, but hasn't been since probably October. He loved getting stuck in the snow when he tried to walk in the grass. It really was too deep for him, so I'd pick him up and put him back on the driveway...every time I did that, he'd start to cry or "yell" at me! HA! I wish I could let him play outside everyday seeing how much he enjoyed it, but it's simply not safe. All four of us were outside today. Jared was playing with our neighbor's son and running between the yards! They were outside for about an hour and a half...and neither was cold! We all had lots of fun!

The "big boys" playing. Jared's in the blue with his friend's snowball making shooter!

I'll end this with just one more picture...this is a picture of Jared and Jaime enjoying the completely emptied spare bedroom.

Jared was tossing paper air planes and Jaime was riding on his bumper car from Titi!

The boys love this space so much that it's official...it's going to be a playroom when all is said and done. So far the plumbing repairs have been made and the ceiling is done, the walls are due to get done next week...Jared wants them to be green! We're getting there! :)
Anyway, I just wanted to share some new photos...it's nice to see such a sick little guy having so much fun! And yes, I still can not believe that it was MY CHILD who once was on life support! Take that, CDH! ;)

Better Days...

2011-01-24T16:57:00.000-08:00

So Mr. Jaime is back to being on the mend...FINALLY! :) While his infection is better, he's still wheezing a lot. We've been doing breathing treatments every 3 hours. He's pretty happy to have his elephant mask back, too. We are no longer needing the fish mask, also known as the pari-mask. He sits like such a big boy, especially when Mickey Mouse is on! Here he is taking his second breathing treatment today just before his nap!

He just took his last dose of this round of steroids before bed tonight and has 3 more days of antibiotics left. There's been mention of Jaime's tonsils and adenoids coming out in the future, I'm thinking if it does happen, it will be in Cincinnati. Jaime is far too young to get throat infections as severe as he's been getting them. The heck of it all is he's not around anyone...he's pretty much home-bound. He's just susceptible to EVERYTHING! We did go to the dr. again on Friday and his throat looked horrible...very swollen, raw, white tonsils. He also is back down to 22lbs. 8 oz. from 24lbs. I will say that he's been eating like a little pig today! I can't even tell you how many graham crackers he ate and he's a HUGE fan of cheese...he asks for it all of the time. He's been seen drinking whole milk without being mixed with Pediasure, too! :)

In other news...Jared received his report card on Friday and I received a call from his teacher...both were very good, so we thought we'd take him out to "celebrate." He wanted to go to Red Robin. He and Jaime both got milkshakes-it was Jaime's first one. Jaime only drank about 1/8th of his...Jared had a refill of his root beer float. HA! Here are the boys with their shakes! Yes, Jaime is in his PJ's it was his first time out of the house NOT going to the drs, it was chilly out and his PJ's were super warm! :)

Late Friday night, I discovered that our wall in our guest room had rusty water running down it. I emailed our contractor and he came over Saturday afternoon. This is what it looked like....

Today, he and his plumber came over and discovered this....

A nasty, sludge filled corroded pipe that was the main pipe to upstairs bathroom, in particular our shower. They were here all day, they had to cut through the ceiling of our guest room, but they fixed the problem. Later this week we'll have the painters over. Now all we have to do is figure out what to do with that room. We may make it into a computer/play room...maybe Jared's room, though he's afraid to sleep by himself yet. He wants us to get him bunk beds so I can sleep on the bottom bunk and he'll sleep on the top! HA! (I don't think so!) I guess he really likes sharing his room with Jaime. Here are a couple of cute pics of the boys. Jared's playing his flight simulator game and showing Jaime how to fly a plane on the computer.

Speaking of planes...here's Jared's GIANT poster board paper airplane! HA! That boy is obsessed with creating paper air planes these days!

Well, that's all for now! The boys are fast asleep and I'm going to shower in my leak-free shower! :)

Good night, all!

Trying to stay out of the hospital....

2011-01-19T15:35:00.000-08:00

Just a quick update...Jaime went to the ENT yesterday, his throat is still really bad and he was put on antibiotics. Over night he developed a nasty cough in which we are now doing Xopenex breathing treatments every 3 hours again. Jaime is still crabby and is refusing to drink...I think he's on to us putting medicine in his sippy cup. On the plus side, Jaime's fever is down to just a low grade one! I have to take Jaime to have a chest x-ray and labs done tomorrow. The drs. will make a decision based on his tests as to whether or not additional treatment is needed. We're doing our best to stay out of the hospital. Keep your fingers crossed that Jaime gets better soon!
Thanks! That's all for now....I have a big crab on my hands that apparently needs to held 24/7. :(

21 Months Old....ER....Spoon....

2011-01-17T18:05:00.000-08:00

Well now that title is a mouthful...pun intended! ;)
Yesterday Jaime turned 21 months old. I can't believe that in just 3 short months, Jaime's going to be TWO! Where has the time gone?!?
Well, for Jaime's 21 month "birthday" we took him to the ER. Let's back track a little-I ended my last post with me not feeling well. I ended up having the flu (chills/respiratory symptoms) all week. Well, it's no surprise that the boys got pieces and parts of it, too. Jared came home from school with a bad headache and low grade fever on Friday...once home, Jaime's nurse told me that he, too, had a fever. Jared's "flu" turned into sinus junk, but Jaime's just consisted of a really high fever...104+ degrees with no other symptoms...or so we thought. The boys' pediatrician put them both on Tamiflu on Friday...Jaime's was covered, Jared's wasn't, so we weren't able to get his. We tried to get the medicine into Jaime several times...he wasn't having any of it. By Saturday, he had completely stopped drinking...had only 2 wet diapers and was didn't have a temp lower than 102.6. I called the dr. they told us to wait it out. Sunday came...Jaime's temp was back up to 104.6...I called the dr. again. She told us to wait 4 hours to see if we could get it down, if not call her back. We were able to get Mortin into Jaime (with lots of forcing), he seemed better. He was super clingy...and on one of the times I had to put him down, he started screaming...I got a really good look into his throat....only to find that his tonsils were huge and white, poor kid! I called the dr. back to tell her that I found Jaime's source of infection, she told me to take him to the ER to make sure it's not strep. Not that it should be with his age, but we still went. The strep was negative! As much as I hate to say it, I wish it were positive because it would have been so much easier to treat. He would have gotten a shot of antibiotics and we'd be done with it, but nooooooo.
Fast forward to today...Jaime had another rough night last night. He woke up at 7 something, I went to shower around 10 and put him in his crib to play, he fell asleep and slept until almost 1. I came home from work, he had a 102.8 temp again. I was able to get some Motrin in him again and I gave him a Tylenol suppository (it's the only sure way to give him medicine, I HATE it, so does he). By dinner time, he was a new kid...which brings me to "Spoon" in the title.
Look what someone used with his cinnamon cream of wheat....and rather enjoyed it, I might add! :)

I tried to feed him his Cream of Wheat, but he wouldn't have it, so I handed him the bowl. He looked at me, tried to put his fingers in the bowl, I told him "no" and handed him the spoon. After a few tries, he was doing it all by himself. He'd even try to stick his hand in the bowl, look at me, say "nooooo," laugh and use the spoon. It was super cute. Now you all know that I took like 12 pictures of him using his spoon, but I'll spare you all of those, tee, hee!
By this evening, he was back to being fussy. I think it will be a long night! On the plus side, I called ENT first thing this morning and we have an appointment tomorrow. We're all a bit uncertain as to why he'd get two significant throat infections in less than a month. It's certainly suspicious at best. Hoping we get to the bottom of this soon! There's been mention about possibly removing Jaime's tonsils and adenoids both here in Cleveland and in Cincinnati, but we were all thinking that would be something to explore "down the road," maybe that road is shorter than we think?!?
Anyway, Jaime's fussing...again, so I better go...all he wants is to be held. Here's to better days! :)

My Graduation Pics.

2011-01-11T17:07:00.000-08:00

As many of you know, I graduated on Sunday with my Bachelor's of Science in Human Resource Management. What you may not know is that I went back to school in 2006. I was set to graduate in 2009, but with all that went on with Jaime, I had to limit my class load. Last semester I took 3 extremely hard and time consuming classes simply to be a 2010 graduate! With lots of blood, sweat and tears, I'm happy to say that I, along with 368 other students, walked to receive our degrees on Sunday. My graduation was at the Veteran's Memorial in Columbus, Ohio. The college I've been attending and graduated from was Franklin University, also located in Columbus, Ohio. This was the perfect venue because my sister lives there. She and her boyfriend, Michael threw me a wonderful (and delicious) graduation party. My parents flew in from Maryland, my in-laws drove in from Indiana and my brother and his family came down from Cleveland, too. It was truly a day to remember!
Here are a few of the pics that were taken that day. Thank you to everyone for you love and support...I'm not sure I could have done it without all of you. Also, a special thank you to my family for coming and supporting me...and for the great gifts and cards that you gave me, too! Thank you to my friends for the well wishes, gifts and cards, too...it's nice to have people like you in my life!
Now that I'm done, you'd think that I'd be seeking a job in HR, well, if the right one with the right hours came along, sure, I'm READY for it, but if not, I'm perfectly content with my position as the Bariatric Patient Care Coordinator at UH. I hope you enjoy the mini slideshow that I've created!

Since this blog is really Jaime's, I'll let you know that overall, he's doing well. He seems to be responding nicely to his new asthma inhaler and here's the big news...we're aloud to SLOWLY give him some whole milk. He's not a fan of it, but if we mix it with Pediasure, he's good to go. Speaking of "going" the milk also makes him do that. Most would think it's a bad thing, but I'm OK with it for now because the more he goes the better he eats. So, we'll give it to him in moderation...it sure beats having to medicate him to go! The other thing that we learned is that Jaime's weight is about 5% and his height is 20%, but his weight to length dropped from 3% to 1%...hmmmm, if only I could stretch that boy out! HA!
As for his swallow eval, he did fine yesterday, at least that's what the speech therapist said. I don't have an official report, though. The last bit of Jaime news is that he's due for his infamous synagis shots this week...good times!
Well my friends, I think I'm going to turn in, I'm not feeling all that great. It was a very long drive home from work (over and hour and a half) and I have the chills...so hoping it's simply because it's cold out and that I'm not coming down with something! This mommy can't be sick! Good night, all!

Airway Clinic Update!

2011-01-06T17:56:00.000-08:00

So Mr. Jaime and I spent the afternoon...literally ALL afternoon at the airway clinic. We saw several doctors, including Pulmonary, GI, Rehab, and ENT...we also saw a nurse practioner and a speech therapist. Having said all of that...here is what we learned....

Pulmonary: Jaime's culture from his bronchoscopy came back positive for 3 different things including a pneumococcal influenza. I can't remember the others, but they aren't treating him for anything specific at this time, as he's already been on antibiotics and steroids. Speaking of...his "steroid weight" today was 24lbs! Woohoo...now if only it would stay that high! We all know it won't, but it was nice to see for once! :) Jaime also has bronchialitis and he has some inspiratory stridors (which basically means he has an addition noise sometimes when he breathes in). He also has some inconsistent wheezing. The bottom line is Jaime has asthma. No biggie, we can handle that. He does have a pretty crappy upper airway, so respiratory infections...or increased secretions will get him in trouble almost every time. He just doesn't have the reserve that "normal" kids have. We did add another inhaler today. We were supposed to get a chest x-ray today, but it was getting late, so we'll be doing it tomorrow.
GI: Jaime is to have 1 to 3 cap-fulls of Miralaxx daily. We are going to keep him on just the Pediasure with fiber and not mix it with high cal boost. We're going back in 3 months for a weight check with her. Jaime is still having lots of issues with solids and constipation. He's great if he doesn't eat, but when he does, even the very minimal amount that he eats (like 2 baby carrots) he gets really constipated. We just need to try to find that fine balance.
Rehab: Today's addition to clinic was a rehab physician. He's there to look at the whole child developmentally. He watched Jaime walk and act in general. You know how I'm always saying that Jaime is a monkey? Well, this dr. stated that there is a direct correlation between hypoxia (lack of O2) and hyperactivity. (GREAT, two little monkeys in my house!) We'll see how all of this pans out in the future, but we definitely have a terrible two year old in our house! This dr. also said that Jaime should be evaluated now by the feeding clinic. This would require seeing 2 more drs. and several more therapists. He said the sooner we start it the better! We'll see! The final thing this dr. did was give me a prescription for medication to help Jaime sleep. I haven't gotten it filled yet...I have mixed feelings about it. This medication is used to treat seizures and is a form of Valium. He said it's safe in the dose that Jaime would be taking and it's non-habit forming, I just don't know if I'm up for drugging my kid like that, but I have it if I change my mind.
ENT: No ear infection! Woohoo! However, the doc did say that if and when he gets one that he will probably bleed from his ears. From what he said it's part of how the gunk fills up in the ear and lots of the gunk is blood and Jaime being a hemophiliac...this will increase the blood. He said that normally when an ear tube pt. has an ear infection the parents just start the ear drops without an appointment, however in Jaime's case, he will need to come in to make sure the bleeding is controlled (which will be done with Factor) and to check that the tubes will still be in place. He said the bleeding could cause the tubes to shift or fall out! NICE...his NP and I were mad that he shared this "minor" detail today instead of on OR day! I would have been horrified if I saw blood pouring out of his ear! WOW! Having said all of that...his right tube looks great, his left one is blocked with wax! ARGH! He's been rubbing that ear, too, I bet it feels funny.
We were supposed to have another hearing test today, but as with the chest x-ray it was getting late, so we're going to try to do it tomorrow, if not tomorrow early next week.
Speech: Jaime will be having another swallow evaluation on Monday. This is because going back to his lung gunk, he must have aspirated at some point, maybe several times, who knows, but the gunk got there somehow and not all of it was airborne. It's been about a year since his last one, so they want to do another one. We'll see how it goes...hopefully it will be good!
I think that about sums up this afternoon. I think we're due back to the airway clinic in 6mos. The drs. get together at the end of clinic and create plans for us and send us a detailed letter with what we're to do next in terms of follow up. It's really a nice idea to have everyone in one place on one day, but it does make for a very long exhausting day for us!
Still no word from Cincy yet as to when they want us to come back down there! I've had a few email corespondents with Jaime's surgeon down there, though. This weekend (weather-permitting) we're looking forward to going down to Columbus for my commencement ceremony. My sister is planning on having a party for me at her house...I'm sooooooo hoping the snow lets up before Sunday so my family can safely travel to be with us!

Jared showing me his rocket set from Uncle Scott...check out Jaime's face in the background...ha!

Jaime's first "big boy" bath, last night-no bath seat! He LOVED it!

That's all for now folks...stay warm, it's a chilly one!

2010 Year in Review

2011-01-02T11:00:00.000-08:00

January: We lost my last living grandparent, my Grandma M. The same day she passed, Jaime was readmitted to Rainbows for a respiratory infection.
February: Jaime, at the age of 10 months, finally crawled for the first time. We also hired our nurse Darlene. (Wow, can't believe she's been with us for almost a year! We just love having her here!)
March: We officially transferred all of Jaime's Cleveland care from Rainbows to the Cleveland Clinic...the team still follows us today.
April: Jaime turned ONE! Need I say anymore?!? :)
May: 1st Cleveland Clinic Admit for Jaime...due to a prolonged (scary) apnea spell.
June: We celebrated my 35th, Jared's 7th and Tom's 40th birthday...AND, Jaime reaching TWENTY POUNDS at the age of 14 months.
July: The "Epic" Journey down south! We met up with several CDH Families, all across the Southeast! What a memorable journey it was! :)
August: After being unemployed for 18 months, I finally started working. This meant lots of nursing care for Jaime. And Mr. Jared started the 2nd grade!
September: Jaime, at the age of 18 months, finally started to walk. We also enjoyed a family reunion...and this was the beginning of Jaime's respiratory illnesses.
October: A trip to the ER caused Jaime to have daily aerosols. The respiratory illnesses (in particular, ear infections) continue. We also, in between illnesses, celebrated Jaime's 1st Halloween at home. He and Jared went Trick or Treating as Star Wars Characters.
November: Jaime was to get ear tubes, but in "Trost-like" fashion, this did not happen because Jaime was ill. We did enjoy a very nice Thanksgiving with Tom's parents, though.
December: EAR TUBES...and a bronchoscopy that shed some light on Jaime's respiratory issues. I completed my HR degree, we celebrated Christmas at home, had a mini trip to Columbus to visit Titi, then left for Cincinnati...which brings me to 2011!!!
January 2011 (possibly February): Another trip to Cincinnati for a heart cath, another bronchoscopy, a sleep study and an admit to Cincinnati Children's, our first one since being discharged from the NICU in November 2009.
Oh and I almost forgot, Jaime is 22lbs. 10oz (5-7%) and 31 3/4 inches tall (15-25%), lots of slow growth, but hey, growth is growth! :)
That's all for now, I'll keep you posted on our Cincy trip once I hear more...it's going to be quite a challenge to coordinate 4 drs. plus anesthesia, especially when 3 of them should be in the OR at the same time. Without going into great detail...the need for all of this is due to Jaime's restrictive airway, recurrent respiratory infections, apnea, poor growth and the potential to cause further medical issues down the road. Please keep Jaime in your thoughts and prayers as we once again prepare him for the OR. Thank you!
Happy 2011 to all of you and thank you, Jaime's World followers, for your continued support! :)

Christmas Pics!

2010-12-30T17:46:00.000-08:00

Here's hoping you all enjoyed your holidays! Jared was in a Christmas play at church on the Sunday before Christmas and Christmas Eve. After church we went to my brother's house. Unfortunately Mr. Jaime wasn't feeling well...he had 102 fever. He was in the ER on the 23rd for bad constipation and now has some respiratory infection going on!
We had my family over on Christmas for lunch. Despite Jaime not feeling well, we all had a nice time. We'll be celebrating Christmas with Tom's family in Columbus on January 9th when I graduate! :)
Speaking of Columbus, we had the pleasure of seeing and staying at my sister's new place on Tuesday night. I'll post those pics another time, it's really neat, though! Thanks for your hospitality Titi, can't wait to see you on January 8th! We were in Columbus because we headed down to Cincinnati for Jaime's appointments. I'll save that info for another day!
For now, I'd like to share some of our Christmas pictures with all of you! We had several hundred between all of our cameras, but here's the "short" version! HA! Enjoy!
Thank you all for the wonderful cards and gifts that you sent, the kids had a very nice Christmas and were way too spoiled thanks to all of you! :)
Merry Christmas and Happy New Year!

20 Months Old

2010-12-16T19:09:00.000-08:00

Silly Baby taking a bath in the kitchen sink!
Most of the water if gone because he splashed it everywhere! HA!

Jaime's 20 month old "birthday" was busy as usual! I had training, so he had a nurse here most of the day. Once I came home, Jaime's Synagis nurse came over to give him his 2 shots, then we were off to the doctors. Why did we go to the drs? Well, pretty much if it isn't one thing, it's another! Here's a little bit of what we've been dealing with over the last few weeks. Jaime's been having lots of issues with digestion over the last few weeks. If he wasn't vomiting, he was very constipated and required lots of Milk of Mag and Miralax with no solid foods just to "go." Once he went, we noticed what food we were putting in was coming out looking the same no matter which end it came out. So, yes, there's definitely some sort of digestive thing going on, we have an appointment with GI on Jan. 6th. So, we'll see what's up then.
Along with all of this digestion stuff...Jaime just hasn't been acting "normal." He's been really pale and not sleeping at all! (YAWN) So, after not sleeping for 3 nights in a row (me because of him), I decided that someone needed to look at him. I originally called ENT, thinking it was his ears. Then, I mentioned the GI stuff to her, so she thought that it be best to go to the pediatrician. Call number 2 was to peds office. I set up a 4:00 appointment. Jaime's "normal" pediatrician wasn't there, so we saw one of her partners...one who has never seen Jaime before (he's seen Jared, just not Jaime). So, I was still thinking it was his ears...until the dr. checked them and said they were "PERFECT." WHAT? REALLY? Jaime's ears are perfect? AMAZING! :) While I was super excited about this, I was kind of bummed that it wasn't as simple as this! ;( So, moving on with the exam, he checked his lungs...clear (yea!), his belly was soft (yea!)....he checked his teeth, in which he's teething, finally the dr. checked his throat. Well, my friends, we found a culprit to his latest irritability. Jaime has tonsillitis and a very bad throat infection, most likely a virus, as the rapid strep came back negative. He has very swollen tonsils with pus all over them and down his throat, as well as extremely swollen lymph-nodes. Who would have thought? The dr. and I were both shocked. It's pretty unusual for a baby to get tonsillitis. It's even more unusual for it to be strep, so we're thinking the final culture will be negative, too. The biggest downfall with the strep being negative is that there's no cut and dry way to clear the infection. We're just going to have to keep an eye on Jaime and hope for the best. He truly had no symptoms other than irritability and paleness...no fever...yet. The dr. said he will probably get worse over the next few days before he starts to get better, I hope not. He is starting to decrease his fluids and with all of his bowel issues, his eating has been horrible. As for his weight, today he was 22.08lbs on our home scale completely naked and 23lbs on the dr. scale completely clothed with a diaper, so we're going to say that 22.08lbs is where he's at. The only "good" news is that Jaime's up 4 ounces from where he was 2 weeks ago.
So, that's what's happening here! Please keep Jaime in your thoughts that this infection doesn't turn into something really ugly! Thanks! Happy Holidays...they're just around the corner! :)

It's beginning to look a lot like Christmas...

2010-12-05T19:10:00.000-08:00

I put this on Facebook, too...in honor/memory of all CDH'ers, a special ornament...

Every Breath they take is our...

Now that my project's done and over with....I was able to spend time with my family! We put up our Christmas decorations. Of course, it wouldn't be us unless we had some drama! Tee, hee! Friday night, I put up these AMAZING solar lights in the front window...well, once fully "charged" one set was blueish white the other set was bright white...back to the store those went! Saturday afternoon, Tom and I put up the outdoor decorations during Jaime's nap...thanks, Mom and Dad for the lawn ornaments! :) We're still trying to decide if we should use a white, green or red spotlight. Last night we tried white...it was a bit bright for our tiny front yard, tonight red...it's nice and dim, but I have flashing blue and white snowflakes in the bay window, so I think it looks like a little police station, tee, hee! Tomorrow we'll try out the green! I'll let you know what we decide on...probably green, though!

White spot lights, a little too bright for our small house.

Red spot light...see, police station...LOL.

Last night, Tom brought up the tree and Christmas boxes. I pulled the tree out, put it together, plugged it in...only 1/3rd of the lights were on. It's a pre-lit tree. It's 7 years old, but still...so I tried to take the lights off...OMG, what a NIGHTMARE! I stopped that little project for the night. Fast forward to today...Jared and I made a trip to Target to try and find an inexpensive pre-lit tree that would fit in our little living room. Well, SUCCESS! Jared found a tall, pre-lit 7 1/2ft pine tree. The problem...the store was out of them. I asked if any other Target store in the area had them...NOPE! Jared said, "I'm thinking of a plan..." I said, "oh yeah." He said, "yep, let's just take this one." The awesome manager said..."what kind of car do you have?" SERIOUSLY? Then, he said he'd take an additional 30% off the tree that was already 20% off! 50% off of a pre-lit tree? HECK YEAH! So, in the cart it went...tag and all! :)
I brought it home, put the 3 parts together, plugged it in and tadaaaaa!

Oh Christmas Tree...

The stockings are hung on the chimney with care...

After the tree was decorated, we went to Panera. We were standing in line, Tom and Jared were eating the "sample" bread...next thing I know, Jared said his tooth hurt. A moment later he said, "Oh no, I think it's going to come out now." Yep, his tooth came out while standing in line of Panera! The funny thing about that...besides the story itself, is that the tooth Jared lost is the very tooth that just popped up in Jaime's mouth! Jaime's up to 9 teeth...Jared's down to 18! Tee, hee! :~D

My boys in their Christmas PJs.
(Rocket Santa & Skull Santa-age appropriate for each!;)

Jaime is doing so well, he's post-op day 4. He's still coughing in the morning and at night mostly...and he's thrown up a few times...this is pretty normal for him, though. But all things considered, he did AMAZING with this surgery. And, I have a hunch that my baby can hear again! :) Some little boy is talking soooooo much! He has a few new words...and some old ones that are now clear. "Sure, NOOOOOO (that's how he says it), Mickey, Dumbo, "Ta" for Santa, Titi, shoe, "shock" for sock"...and he tries to repeat, but it's not very clear when he does that. It's so cool to hear him finally "talking."
As for eating...that's still a touch and go thing. Here's an example...today he ate a tiny amount of Life Cereal for breakfast, but for lunch he had some cheese (he LOVES cheese...thanks, Beth for the idea, if you didn't give Katie some, I would have never tried it with Jaime), and 2 1/2 mini corn dog bites. For dinner he had 12 Panera Mac & Cheese shells and some water in a cup with a straw. Yesterday, he didn't eat lunch, but had 3 mini pancakes for breakfast and 1 puree pouch, 1 baby carrot, 2 handfuls of cheese, and 2 pineapple chunks for dinner. Of course, everything still needs to be "minced" for him to tolerate it, which is so time consuming to cut up for him, but hey, if he'll eat, I'll do anything for him! :) Our biggest hope with him eating is that he'll keep it down. Last night, he ate awesome, but threw up in bed...pretty much like he always does. :( Getting calories in the boy is still an issue, one that will be discussed in Cincinnati at the end of the month and at the airway clinic in January.
Speaking of the little Monkey, he's coughing/gagging as I type...my cue to get the "bucket."
Good night, all!

Post-Op Day 1

2010-12-02T19:20:00.000-08:00

All things considered, Mr. Jaime did AWESOME! He was a bit restless last night, I ended up giving him 2 doses of Tylenol. He threw up a few times, but after that, all he wanted to do was drink...he had 20oz. of Pediasure, just during the night!
He did OK today. He's not a fan of ear drops, though, that's for sure! I basically have to pin him down to do them, but the good news is, Jaime's OR nurse called tonight to check on him and said that we only have to do them through tomorrow! :)
Speaking of Jaime's OR nurses...they were such a great team! I am so pleased with the Clinic. I ended up having to go by myself and they were so incredibly supportive. The anesthesiologist was in the room the entire pre-op and during Jaime's "unstable" post-op period. They were an amazing bunch of people! Jaime's nurse, Amy, was super cute. She was from the Philippines and had an accent, but tried to comfort Jaime by singing Christmas carols to him...then another nurse came in and joined her! :) She told us that they don't have Rudolph in the Philippines...HA! She made sure I ate, well, I had some graham crackers and water, she tried to offer me more, but I wasn't up for it at the time. She was the one who took the pics yesterday. And she gave Jaime a stocking with 2 books and pencils for Jared! She called tonight to check on Jaime and she told me he was such an adorable, easy patient for her, she enjoyed caring for him! Likewise, we enjoyed her!
When the drs. were in the room, Ashley, the Childlife Specialist came in to "play" with Jaime. She brought the bubbles in which Jaime had to carry into the OR. HA! From the check-in counter to post-op, even the valet, a great experience all around!
Now back to Mr. Jaime. He's so incredibly vocal today...and loud, too. It's amazing what "unblocked" ears and clean lungs will getcha! ;) He said "Elbo" for Elmo today for the first time and when I asked him if it was OK for Jared to go to school, he said "SURE" very loudly and then "ba bye." He's never said "bye" before. I wouldn't think that the tubes would work so quickly, but I'm sure he's got to feel better overall without his ears being plugged.
I made a call to Cincy today! God bless, Debbie in high risk! She listened to me ramble for nearly a half hour today! :) I told her all about the surgery and the airway thing...I asked, even though I kind of knew the answer...if Jaime's narrowed airway was a CDH thing or a Jaime thing...it's a "Jaime thing." :( She, too, said that knowing it will change our course of treatment for when he's ill. It's a good discovery to have made sooner rather than later. I also told her about his weight...or lack there of...she was going to consult the dietitian and neonatologist for advice. He's such a peanut...as I know many of these kiddos are!
On a final note...our plans to go to Cincy just before Christmas have been canceled due to drs. not being around. We're still going to make a trip to Cincy before the end of the year, just not before Christmas.
Before I go, I'd like to thank Colleen for our awesome Mexican dinner tonight! It was so nice not having to cook for two nights in a row! :) It was also great not having to worry about dinner tonight because Tom was gone and I had my presentation to do...and take care of the boys! All went well...for the most part. My computer did something weird causing me to fumble a bit on my first slide...I think I had too much open and it crashed all went black...but I think I recovered on my second slide! ;)
That's about all...here's a pic of Jaime in his new "sleep travel tent." Thanks, Nana for Jaime's (I mean, MY) early Christmas gift...he (WE) love it! I think it will work out just fine and definitely a space saver! (And thanks, Julianne for the "Elbo" basketball outfit...Jaime wore it in honor of Lebron playing in Cleveland tonight. HA! Too bad we lost! :(

OR Update....

2010-12-01T16:03:00.000-08:00

I received a call just after 8:30 A.M. to bring Jaime in early. Sooooo, I hurried up took a shower, packed the diaper bag and went to the hospital. Jaime and I got down to the hospital, valet parked, walked over to our building, registered and went right back into the Pre-op room where we found anesthesia waiting for us. I talked to them, then ENT, then Pulm...they ordered Jaime's IV Factor to come up...once it was up...off we went to the OR. I got to bring Jaime in the OR and stay with him until he fell asleep at about 11:05 A.M. (They even let me blow bubbles in the OR to calm Jaime down! HA!)

I couldn't tell you how long it took because I was trying really hard not to worry and to do homework. Sometime just before 1, Jaime's Pulm. walked out to talk to me. He said that the only "surprise" was that Jaime's upper airway is 60% blocked. It's the way that it was developed, it's not a new problem or from swelling. He did have some swelling in his bronchials and some fluid in which they extracted for biopsy. The dr. said that he thinks they got a nice sample...so we'll see what it says. As for the blockage, Jaime's pulm. said that the biggest thing about this is that they will change his course of treatment when he's sick to be more aggressive with steroids, whether they be IV, oral or inhaled. He said that Jaime's stable, so he wouldn't recommend operating because surgery would be a trach...we're so NOT THERE! Having said all of this Jaime still has tracheomalacia, this was diagnosed in Cincy last May. I was so hoping that it would be gone by now, but no such luck. He gave me these pics...you can see the blockage in the very first one.(Sorry, Dad, I know you don't like these, but you know me, I just had to post them!)

After talking with Jaime's Pulm. I got buzzed back to PACU. I found Mr. Jaime gray, with 2 drs. and 2 nurses over him while giving him a stat breathing treatment. He didn't come out of anesthesia breathing all that well. They gave him stat breathing treatments, sedated him a little bit just to control his breathing and put the O2 mask on "blow by" which just means that they were blowing O2 near Jaime's face at a very high rate. After about an hour, he was resting comfortably.
Hence the following pics. They let me hold him once he was stable.

After yet another hour or so, Jaime woke up had some apple juice and was ready to go! :) Yep, they sent him HOME! :) Here are the pics of us getting ready to leave the hospital.

We are home, but man is Jaime clingy! He's doing awesome for the most part. He's still coughing, which the pulm. told us is to be expected as he had to put saline in his lungs to clean them. He's also very clumsy in the way of walking, due to the anesthesia. Jaime just started drinking Pediasure and eating about an hour ago. For the record, today's weight was 22lbs.4oz (dressed with a diaper), still way under the 23.1lbs that we were at a few weeks ago! :(
Speaking of food, my parents had dinner ordered for us from Vittorio's. It was delicious, as usual! Thanks, Mom and Dad, it was super nice not to have to worry about cooking after a long day! :)
OK, I'm off, Jaime's very high maintenance (in the way of making me hold him 24/7), so off I go, it's too hard to type with him jumping on me. I'm hoping for an "early" bedtime, but I don't know, he slept most of the day at the hospital and at home.
Thank you all for keeping Jaime in your thoughts and prayers today, they are much appreciated.
Good night, all!

Jaime's OR Day is Upon Us!

2010-11-30T20:25:00.000-08:00

I called The Cleveland Clinic late this afternoon to find out what time Jaime's surgery is supposed to be tomorrow. I learned that we need to be there at 10:00 A.M., with his surgery being around noon. He will be getting ear tubes and a bronchial scope. They have reserved the OR for 2 hours! YIKES! I'm sooooo hoping it doesn't take 2 hours...I HATE waiting in the waiting room for that long! We'll see though! Colleen will be with me, so waiting won't be that bad...thanks, Col! :)
I'll update when I can...I don't know if Jaime will be staying or not...the goal is to send him home, but they have registered him as an admit!
I think he's feeling fine, but I'm not an anesthesiologist...tee, hee! I don't see why tomorrow won't be a "go."
Please say a little prayer for Jaime tonight/tomorrow...thanks!
Enjoy the pics we took tonight of my skinny minny! :)

Thanksgiving 2010

2010-11-27T12:05:00.000-08:00

I was so upset about Jaime's surgery being rescheduled that I forgot to mention that Jaime's been home one year! He came home from Cincinnati on November 18th, 2009 after his second admit to the NICU. So, now we've come full circle...a whole year HOME! (with the exception of a few admits here in Cleveland). Mr. Jaime celebrated his second Thanksgiving at home...eating just 2 slices of sweet potatoes and some tastes of pumpkin pie...about the same amount that he had last year. It's amazing how far he's come and yet we have so much further to go!
Overall, Jaime's doing well. Still coughing a bit, but I'm hoping that surgery will still be a "go" on Wednesday. Jaime's still on antibiotics...so is Jared for that matter. Jaime continues to eat what he wants, when he wants. I just wish he'd eat more and tolerate it. He still throws up many nights due to reflux...we're still trying to figure out how to resolve that. No luck yet!
Jaime's walking...running at times, all over the place. He climbs on everything...and is one happy (naughty) little toddler. He still doesn't talk much...a few words here and there, but he communicates through sign language. You always know what he wants! Jaime is still receiving PT, OT, & SP every week. We're hoping that Jaime's words and eating skills will pick up once his ears are better.

Tom's parents were in town for Thanksgiving, so we enjoyed a nice dinner with them. Here is a slide show of some of the pics that were taken over the last 4 days...from Jared's swimming to Thanksgiving to Jared's ice skating...enjoy!

That's about all for now! Please keep Jaime in your thoughts and prayers as we approach his surgery day (Wednesday, Dec. 1st), thank you.

Latest Update...Take 2.

2010-11-19T20:14:00.001-08:00

At 8:00 A.M. I received a call from the ENT's surgery scheduler telling me that they had rescheduled Jaime's surgery for Dec. 13th, which was exactly ONE DAY AFTER the 30 day "pre-op" mark. What did this mean? Well, that Mr. Jaime would have to go through the entire pre-op process again...ummm.....yea, I don't think so! I told the girl she could schedule it, but I guaranteed her that it would NOT be happening that day. By about 10:00 A.M. I realized that I'm due to go to a week long training class for work, starting on Dec. 13th, so I called her back leaving her a message saying that we can't schedule surgery that day. By noon, I was talking with her again and she said, "we'll just do it sometime next year, maybe Jan. or Feb." I told her that I refuse to have my son on antibiotics for that long and that something else needed to be done. I told her to call Jaime's pulmonologist to see what he had to say. Moments later the phone rang again...Jaime's Pulm. was very upset at the mere thought of waiting that long to do his surgery...so, he told her that it will be done early on Dec. 1st. YEA! This goes against anesthesia's 2 to 3 week plan that I was told yesterday! I'm so happy that someone's up there advocating for Jaime besides me! His Pulm. is wonderful...he will be doing the bronch and ENT will be doing the tubes at the same time. Meanwhile, Hem/Occ will be monitoring his Factor levels and anesthesia will hopefully be keeping Mr. Jaime safe and comfortable during the whole thing! ;)
Dec. 1st works good for me (probably not Tom, as it's concert season, he'll be too busy with his schools to be there), but I'm off that day AND Dec. 2nd because Jaime was supposed to have his 6 month airway clinic follow up appointment that day (in which we've now postponed until Jan. 6th). I had requested the day off already! SOOOOOOO......let's hope and pray that Jaime's antibiotics work their magic and keep him healthy enough to "pass" anesthesia's requirements in TWELVE days! ;)
As for how Jaime's feeling...he's doing well! His cough is MUCH better! All he needed was a few doses of antibiotics! :) His liquid intake is still down, thus creating less urine output, but otherwise he's well. He's eating a bit more than normal, probably because he's not sucking on his sippy cup (it probably hurts his ears to do that). Too bad, his food amounts don't really give him much in the way of calories. I'm hoping that once Jaime's post-op, he'll feel better enough to eat/drink and start gaining weight again.

On a "fun" note...Jaime has been home bound for several weeks now, other than for drs. appointments, so tonight we decided to "air" him out. I don't want him to think that every time he gets in the car that we're headed to the drs. where he'll be poked and prodded and since he just received his Synagis shots, it was a pretty "safe" time to go out. We had dinner, then went to Mitchell's ice cream for dessert. Well, the Beachwood Mall is by Mitchell's so, we decided to hit a store or two that we don't have in our "local" malls. After walking in through SAKS, we saw big Christmas Trees. Jared was so excited that the mall was decorated for Christmas already. I told him that there was a good chance that Santa was there...lo and behold right down the hall from SAKS was Santa. The "elf" (ironically named, James) told us that tonight was their grand opening this year and that we were the first ones to see Santa! Jared was super excited. He and Jaime (so not prepared for a Christmas photo) ran up to Santa. There was no one in line, so the boys had an unlimited amount of time with Santa. Apparently, Jared said that they were talking about things that both boys wanted (he created a list of things for Jaime) and Santa said his elves could make anything, that even Legos wouldn't be a problem. Of course in the car I explained to Jared how Mrs. Claus had the final say in what toys were actually delivered as SHE'S the one who "packs the sleigh." (Indeed she is, only 3 "toys" from Santa for each boy...Baby Jesus received 3 presents that day and so do they!) Anyway, I got a photo for Christmas cards...but here's a sneak peak at the cell phone pics we took! It was nice to be the first ones to see Santa...even though it's not Thanksgiving yet...Jared thought it was the coolest thing ever. I told him that Santa always remembers the first kids he sees that year...and I reminded him that he'll be keeping a special eye on he and Jaime to make sure they're good! ;)

That's my update...much less bitter than yesterday's...I'm just glad that I'm not the only one fighting for my son...I've got his pediatrician and pulmonologist on my side! Coincidentally, they are the two who are the head of Jaime's medical team here in Cleveland.
Wishing everyone a wonderful weekend...my goal is to finish up the report part of my senior project and take a little breather by Sunday! ;)

And the Saga continues...

2010-11-18T10:14:00.000-08:00

I took Jaime to the pediatrician today...only to find out that his ears are once again infected! Go figure! Several appointments ago I was told that it wouldn't be a problem to do Jaime's surgery if his ears were infected as long as his lungs were clear...well they ARE clear, yet someone has made the executive decision NOT to operate.
I can not even begin to tell you how I feel right now! I'm afraid that all of my positivity has been drained and exhaustion and sadness has set it. The pre-op process was was bad enough for Jaime and to hear that it's all for nothing and will have to be done again?!? Sure, we can reschedule surgery in a "few weeks." Yea, in the meantime it's not the drs. who are up night after night cleaning up vomit from their toddler because his ears are infected and the drainage is gagging him. It's not their child who doesn't speak and may have permanent hearing loss. It's not their child who has a hard time gaining weight to begin with just to lose 1.3lbs in a week due to illness related to his ears. It's not their child at risk of becoming resistant to antibiotics because they're on them so much...already resistant to one! It's not their child whose veins are already shot from all of the poking and prodding. It's not their child who is miserable and forced to see dr. after dr. and get test after test...simply for nothing to be done in the end.
I understand being cautious, I truly do. But, when I do all of the right things, get "cleared" by all of the right people, put Jaime through hell and back again...just to be told by someone who doesn't know Jaime at all that they want to cancel surgery?!? I can't accept that! News flash, Jaime has and always will have crap lungs...a "few weeks" from now won't change that...in fact, chances are a "few weeks" from now Jaime will, once again be ill. He will never get better until he can have his ears surgically drained and cleaned. He needs to be "reset." I've heard that by just about all of his drs. It's just not fair! Something so simple....an easy "cure" for Jaime, has turned into a fiasco. There's no reason for it! I would be the first one to say that I'm not comfortable with Jaime going to the OR if I felt like he wasn't well enough to do so, but I'm JUST "MOM."

Here's to better days...and to a Happy Thanksgiving with a child who WON'T be post-op! :)

P.S. I called the pediatrician to let her know what was going on....she just called back. She is just as frustrated as I am. Jaime will now be on continuous antibiotics until he's post-op...whenever that may be!

Quick Update

2010-11-17T13:37:00.000-08:00

A couple of things...Mr. Jaime received his first set of Synagis shots today. Prior to receiving them (he gets 2 now each month because of his size), he was weighed (on our home scale, which to-date has been pretty accurate), well, it seems that he's lost some weight again. Not surprising since he's not been feeling well! He weighed 22.8 lbs today, last Friday he was 23.1 lbs. So, he lost about a pound. He was weighed with clothes and a diaper on at Friday's weigh-in and was fully naked today, so that can be some of the change. That's just always disappointing to see! :(
Also I found out today that pulmonary has decided to bronch Jaime at the same time he's getting tubes...not sure what else they are planning...maybe a CT to finish things off?!? Maximizing anesthesia! Cardiology in Cincy cleared Jaime for his surgery,so has hematology, which is GREAT! :) Speaking of hematology...Jaime's labs are back, his Factor VIII level is 11%. This is AWESOME news! Is it normal...NO, normal is anything over 60-70%, but it's nice to see that he is producing factor and that his level is higher than it's been in the past with no Factor infusions. Jared's level is always much lower than that..which probably explains why Jared's body looks like it got hit by a mac truck in general being that he's covered in bruises all of the time. Anyway, not that probably any of you understand the whole hemophilia thing, but I was very pleased to hear that his level was this high! His hematologist has put a pre-op/post-op plan together for him and he will be receiving Factor infusions as precautionary measures.
Now the clincher...Jaime is going to the pediatrician tomorrow to see what this cold is all about. Is is just a cold? Is it his ears again? Is it affecting his lungs? He does have a cough and anesthesia said that we very well could get to the surgical area Monday morning just to be bumped from the schedule because of his "cold." I hope that doesn't happen, but it very well may! Monday is a relatively long time away, so keep your fingers crossed! Jaime really needs to get this done. His chronic ear infections have begun to affect his hearing, the sooner he gets it fixed the less permanent hearing damage Jaime will have.
As for Jaime's orthotics...well, I canceled his appointment yesterday. He was sleeping when he was scheduled to go and with him not feeling well, I thought it was more important for him to rest. Honestly, I don't see how they will be able to fix the hinge for it not to bruise him! We're going to reschedule when he's feeling better.
That's all for today's update...back to school work for me!
Oh, here's a pic of Jaime's thumb splint (some people have been asking what it looks like)...he wears it all of the time, it's to keep him from tucking his thumb into his hand. If it does what it's intended to do, it will give Jaime proper hand (thumb) positioning. It's not the best pic of Jaime, but you can see what the splint looks like. He has his orthotics on in this pics, too. (And he's wearing some lovely clothes courtesy of Julianne (Angel Julia's, Mom! :)

Pre-Op-19 mos. Old!

2010-11-15T19:52:00.000-08:00

Sorry it's been so long since I've updated...I'm working on my senior project and it's pretty much consuming what little "free" time I have!
Anyway, LOTS has happened since my last update! Jaime is on track to get his ear tubes placed next Monday. I still haven't heard if anything else will be done or not, but the tubes will be done for sure. The doctor is admitting him as an observation patient with the intentions of sending Jaime home, but have a bed ready...just in case!
We met with anesthesia and hematology on Friday. Jaime is SOOOOO over doctors. I imagine all CDHer's (or chronically ill children) get that way. Well, Mr. Jaime has hit this mark. He cries the minute we pull into the driveway at CCF or when we stroll into the office waiting room. He's suspicious when we get into elevators, too. He's fine in the exam room, that is until someone starts touching him...then it's pretty much kicking and fussing from there. Having said that...you can imagine how things went when Jaime had to have his pre-op labs done! It took 3 of us to "control" him. The first (yes, I said, first) line when in just fine...but with his fighting and twisting..it was lost. He was hysterical, he even threw up between the IV's. Next was line #2...it truly was like sucking blood from a turnip. I was covered in snot and vomit by the time we left there, he was hot sweaty and had 2 IV sites bleeding. It was AWFUL! I fell horrible for him when he has to go through that. If he wasn't pre-op, I think I would have vetoed his labs! It will be my goal to eliminate pokes as much as possible in the future. I told them this time that they get only 2 tries...and that was it. Jaime fell asleep the minute he got into his car seat.
Now not to end that visit on a bad note...Jaime was weighed and measured...we had the BEST "growth" ever! :) Jaime is 23.1 lbs and 31.5 in. He's just over 10% for weight and he's around 20% for height (for his adjusted age)...he still wouldn't be on the charts for his "real" age which is 19 months old TODAY! :) I was very happy about this! See, we DO have great things happen, too! :)
Now other crazy stuff going on...Jaime's back to throwing up every night again. I just can't seem to get him to take his Prevacid routinely. He either spits it out or scoops it out of his mouth before it dissolves. The drs. are all aware of this...we're due to see GI on Dec. 2, so, hopefully she will change things for him. Cleaning up vomit all of the time is just gross, not to mention he's a mess, his tummy hurts and it takes a while for him to recover from a respiratory stand point. He turns very gray or blue during one of his gagging spells. It's not pretty! :(
In other news...looks like we will be adding an orthopaedic dr. to our list. Jaime's left leg is shorter than his right which is causing him to have a weird rotation in the hip area. At the very least, we need to have someone monitoring this to avoid future issues...especially any involving joints...a joint bleed would be awful for him.
Speaking of ortho stuff....Jaime got his new thumb splint. He tolerates it very well. We're not seeing a huge difference yet, but I think we will in time. As for his AFO's...well, those aren't working out all that well. They fit just fine and Jaime tolerates them, but here's the problem...being the lovely little hemophiliac that he is...the AFO's are bruising the heck out of his legs. He's getting big bruised welts on the back on his thighs from the belt hinge and bruises on his shins from the front piece. We are going to the orthotics store today to see if there is anything they can do to change this. Oh...and these bruises are just from a few hours of wearing the braces...so imagine what would happen if he was wearing them all day?!? Anyway, if they can't make adjustments to them, then I'm going to make the executive decision not to use them. If they can, then we are going to get special shoes made to fit them, as well. The ones I bought are OK, but not the best.
And a final note...in typical "Trost fashion" Jaime is sick...again! Both he and Jared have colds. I don't know how or if this will effect his surgery scheduled for Monday or not! We'll see. I have a call into the ENT just to let them know of these latest developments.

Our little aspiring musician! :)

Little Chef, playing with Jared's old kitchen!

So, that's about all for an update! I will try to update later in the week if I can! We're nearing the end of our senior project, so I may actually be getting my time back in a few weeks!

P.S. BEST NEWS OF ALL...Jaime WILL be getting Synagis shots again...got our first dose of the season delivered today with it being administered later this week...pending any fevers from his respiratory illness~

BIG NEWS....OR

2010-11-03T06:22:00.000-07:00

Wow, it's been over a week since I've posted....there's so much to write about....don't worry, I'll try to make it brief.

First off, last week, Jaime contracted yet another double ear infection. That prompted a visit to the pediatrician and calls to the ENT & Pulm. Jaime's back on antibiotics. However, he was feeling better and did go Trick-or-Treating on Halloween...his 1st Halloween at HOME! :) He had fun going up to the houses with the kids...he even picked out a Reese's Peanut Butter Cup that he held almost the entire time he was out...super cute! (Wouldn't eat it, though!)
Here's the big news....since Jaime got another ear infection, the ENT decided to go forward with the ear tubes. If you remember, we were told that they were going to wait on the tubes for at least another 6 weeks just to see how he'd do. Well, the wait is over and we have an OR date....Tomorrow we are going to ENT for our pre-op appointment and next Friday we are going to Anesthesia and hematology (for a hemophilia consult) then, on November 22nd, Jaime will be getting his ear tubes. At this point, I don't know if they will be doing any other scopes...there was some talk of that a few weeks ago, but last week we spoke about just getting the tubes in, I'll know more after our appointment tomorrow morning.
So, that's our big news...all of these appointments and the surgery will be done at The Cleveland Clinic Children's Hospital. (Yes, that's right, Cincy friends, I'm actually letting another hospital system take Jaime to the OR...I'll be honest....it's a bit scary! ;)
Enjoy the slideshow from Halloween! :)

I'll update more as I know it!
Please keep Mr. Jaime in your thoughts and prayers as we get ready for yet another trip to the OR...yes, it's a minor procedure, but nothing's just "minor" when you have compromised lungs and a bleeding disorder!
Thank you!

Yes, we have another FLASHBACK!

2010-10-26T16:42:00.001-07:00

Jaime was whisked away to the OR for his second repair surgery (at 6 months old), 1 year ago today! Here are my "flashback" pics from last year!

Jaime & I pre-op

Jaime after I finally gave him up ready to go to the OR.

The OR team, doing their final checks.

My poor baby boy, post-op!
This was so sad to see an active 6mos. old paralyzed (medically induced)! :(

Jaime's NICU room 1 year ago today!

Fast forward to today...running around with his big bro...and showing off his new orthotics. :)
I can't say it enough...what a difference a year makes! :)

Jaime watching Handy Mandy in his new AFO's.

Getting ready to pounce on me.

Jaime's AFO's from the back...Spaceships on the Right, Planets on the left.

Jaime running after Jared's paper airplanes after dinner! :)

As for a quick update...you can see that Jaime's AFO's FINALLY came in. So far so good! He's only worn them a total of 7 hours, so far, though. We're working them in slowly and watching for any skin breakdown.
Remember our stellar eater?!? Yea...he's GONE! :( The steroids must be completely out of his system because he's back to eating terrible...and throwing up either first thing in the morning or during the night! Reflux affects him a lot during the night. I called Cincy today and was told to alter the time I give him his reflux medicine, we'll see if that helps him! I hope so!
That's about all to report!
Have a good one!

WELL Check!

2010-10-22T19:36:00.000-07:00

Jaime went for his 18 month well check today...and get this...he was actually WELL!!!! :) So well that he got 3 shots!!!
I think that is the first time we've EVER been well at our "well check." Jaime's stats today were 22.10 lbs, 31 in. tall and his head is 19 in. His height and weight are in the....drum roll please....10%-15% and his head is in the 65%-70%. Now, the only thing that dropped was his height, he was close to 35%, but has dropped to 10%-15%. That's OK, it's not like we can make the boy grow in length.
As for his ears...they STILL have fluid in them, but look "good." We were at the ENT on Tuesday who said that his ears were no longer infected, but that there was a lot of fluid in them and his right ear drum was retracted. We also discussed getting Jaime tubes, but she wanted to consult with the rest of the CCF airway team first. Well, she got back to me this afternoon...the drs. have agreed to give Jaime 6 more weeks to see how he does. This is good and bad...the main reason for the wait is...c'mon take one guess?!? Jaime's hemophilia...it puts him at a whole new level of risks! Nobody wants to touch the hemo! The tubes aren't such a huge deal, but here's the thing, they're thinking that while Jaime's under anesthesia, they might scope him, too...that's kind of where the risks come in to play. We'll see, we are all hoping that Jaime doesn't get another ear infection between now and Dec., while we're hopeful, we're realistic, too! While I don't want to put my baby through yet another procedure, I'm just a little sad to know that Jaime may have to be so sick again before the docs do something all because of his hemophilia. :(
Anyway, moving on...Jaime's orthotics are finally ready. We're due for our fitting on Monday. At this point I'm thinking they will just aggravate him rather than help him, but only time will tell. We will also be getting Jaime fitted for a thumb brace.
New things to mention that Jaime's doing....he LOVES to dance. The other night he was dancing in "downward facing dog" position. It was HILARIOUS. He loves music, thank God! :) He says two new words..."gum" and 'cook-em" (AKA, cookie). He's always putting stuff in his mouth, when I ask him what's in his mouth he'll either say "gum" of "cook-em." I call those little Gerber puffs "cookies" that's where he got the "cook-em" from, but I don't know about the gum thing?!? It's really funny. Speaking of eating...he's still eating like a champ! I still say it's the steroids, but hey, I'll take it! He's addicted to those little puree pouches walking all around the house sucking those down! I swear that is the BEST invention...the boy loves them...well most of them anyway.

Here's a pic of Jaime "eating" The Purple One! HA!

Today was a good day other than some morning vomiting. Things seem to be moving in the right direction...at least for now. We all know that the CDH roller coaster never ends, so tomorrow may be a different story, but I'll take the "good news" when I can! I was just talking to Bev tonight about how many drs. our kids see...Jaime has a total of 13 drs., 6 at CCF, 4 in Cincy, and 3 at UH. Of course that doesn't count his home care team of therapists and nurses. That's just CRAZY, but I'm thinking pretty typical for many CDH'ers.

Since this is technically our "family" blog, I'll mention a little about the rest of us. I had the pleasure of going on Jared's 2nd grade fall field trip with his class on Wednesday. We went to the Holden Arboretum, it was a beautiful day. The kids seemed to really enjoy it, too. Jared has a really nice class.

Here's a pic of Jared during his field trip holding at leaf from a magnolia tree...isn't that HUGE?

Overall, he's OK, too (medically speaking). He's had a few minor injuries at school this year, some requiring Factor, some not. Tonight, after dinner he wiped out on his bike. It was a pretty hard fall. He has "road rash" on his arm and knees and some bruises on his legs and right hand. He got banged up pretty good. His arm looks pretty bad, he's going to be really sore come morning. I made him take Tylenol (which he NEVER does) and I, of course had to give him a big dose of IV Factor. Poor kid! He's supposed to go ice skating in the morning, but he told me he didn't think he was going to be able to, :( we'll see though.
As for me, I've been super busy with school. In addition to that, I have been offered and have accepted a new position. It's not like me to change jobs after just a few months, but I couldn't pass up this offer. The position is back at UH at one of their satellite hospitals (for you locals, it's at Geauga...yep, the heart of the snowbelt...should be interesting in the winter). I will be a patient care coordinator in the Bariatric Treatment Center. I'm very much looking forward to this position. I will be starting Nov. 1st, today was my last day at CCF. The other nice thing about this new job is that it's only 2 full days a week (at least for now until we build up our program there). I was working 5 1/2 days a week at CCF and trying to fit in all of the kids dr. appointments and Jaime's therapies in the morning, this way, I'll have 3 whole days off to do that. Also, this position will allow me to be home when Jared gets home, that's so important to him (and me, too!).
As for Tom, his band has been playing out alot, this weekend they are playing a benefit for victims of violence. He will also be starting Christmas Honor's Band and his holiday concerts are literally just around the corner! He's been busy and has rearranged his schedule to be home when Jared gets home while I've been working. He's also been taking care of the boys more at night while I sneak away to the library or Star Bucks to do my homework. (It's my graduation semester, I MUST do well! :)
So, that's about all for the update on us! I'm hoping for an uneventful weekend and the goal is to keep Mr. Jaime HEALTHY! If you're sick....please don't come around him! It's just about Flu season and that is the LAST thing Jaime needs (or any of us for that matter!). We will go back to being "winter" hermits again...just to protect Jaime, we're also hoping that Jaime's synagis shots will be approved again to protect him from RSV.

Happy Weekend, Everyone! :)

One Year Ago Today....18 Months Old!

2010-10-16T20:19:00.001-07:00

Jaime turned 18 months old today! His current stats are 22lbs, 31.10 inches.

Even though the last few weeks have been quite challenging...to say the least...we are a far cry away from where we were last year this day...being readmitted to the NICU for reherniation.

Who could forget this infamous photo...taken of Jaime's chest x-ray, post upper GI and swallow study? Ahhh...the glowing bowel sitting in Jaime's chest...the very thing that was missed during our 3 week hospital stay in Cleveland...caught by our dear friends in Cincinnati.

Jaime in RCNIC B-1, where he'd stay for an additional 34 days.

Here is Jaime today...exactly 8.8lbs more and 6.6 inches bigger than he was one year ago at the age of six months!

In these photos Jaime's sporting his new "bubble fish" mask...and he's even learned how to help prep his own aerosol. What a trooper!

Jaime's multitasking, playing, watching Disney and getting a treatment! HA!

Happy 18 months, to my little CDH Warrior! :)

He's still on the mend, but overall doing well. He ate like a champ today...several cavetelli's for lunch and some soup, bread and puffs for dinner. I even bought him a "big boy" sippy cup that he did well with...it's one that doesn't have a separate spout. I'm going to gradually ease him into using it. The current ones do not have replacement spouts, so when he bites through them, I have to purchase a whole new cup...it's getting quite expensive.
As for developmental skills...Jaime's walking, climbing, he just learned how to ride his "bike" forward, he's learning to throw and kick balls, too. His speech has been really behind, most likely due to the hearing issues, so he's not saying any new words except, "car." He's learned to tolerate many textures and he can put the spoon in his mouth if you put the food on it. He's still eating soft textures or minced pieces of food (with the exception of meat, it's just too hard for him). The key goal here is volume! We'll get there...

That's about all to report! Have a nice weekend!

Another Trip to the ER

2010-10-15T19:22:00.000-07:00

After dinner yesterday, Jaime spiked a fever...it was close to 103. I gave him Tylenol and called the pulmonologist. We were advised to give him some time for the Tylenol to work, if he didn't get better, then we were to take him to the ER. As you guessed, he didn't get better...here are pics of him before going to the ER.

Jaime being super clingy.

A cool drink to try and cool him down while we were waiting for the dr. to call us back.

We got to the ER, Jaime's temp was down to 101.8., but his heart rate was still high and his breathing was very fast. He was retracting a lot, too. They immediately put us in a room. (I did call ahead to see what dr. was on). They gave him 2 breathing treatments, suctioned his nose and swabbed him for RSV and the flu, then placed an IV, drew labs and sent him for a chest x-ray. While waiting for the results, he got IV fluids, IV steroids and IV antibiotics and another breathing treatment. Jaime's x-ray was unchanged from his Tuesday one and his flu and RSV were both negative...thank God. His labs came back abnormal with a high white count indicating an infection and he was slightly "dry." Jaime's temp slowly came down, at one point we talked about admitting him, but his breathing became under control, so we were able to be discharged. He was basically diagnosed with an asthma attack. The ER dr. said that his fever exacerbated his respiratory status causing him to ultimately have a full blown asthma attack.
Some pics of Jaime in the ER last night.

Breathing treatment #1.

Checking out his IV.

Jaime LOVED that caterpillar...it was the ER's...it was a GREAT distraction.

Jaime on the phone...AKA, pulse ox!

He was saying "Jared" in this picture, I think he was trying to call Jared on the pulse ox to tell him to come pick him up! HA!

Jaime is still on 6 breathing treatments a day, two of them being steroids, he's still on antibiotics-his ears are reportedly "getting better" :) and he's on an oral steroid, too. That one was added again last night. Jaime's not a huge fan of this steroid, as we've had a really hard time getting it into him today. He gagged and threw up this afternoon after just 1ml of 5mls. We put the rest in his sippy cup and he refused to drink it. Thank goodness it's only once a day...I don't know what I'm going to do tomorrow...hmmmm....T-4 days.
Here it is 24 hours later...and I have a new baby! He's still coughing and breathing fast on and off, but his temp is down and he's eating a little bit more. We've had good wet diapers and he's just overall more pleasant! I keep telling the drs. that steroids do this boy a world of good. Not that he can live on steroids, but truly they work wonders for him. (Of course the jump start IV steroids and antibiotics didn't hurt, either!:) My only issues is, I wish they would have done all of this on Tuesday, but Jaime was afebrile (didn't have a fever) then, so really there was no point.
Anyway, here are some pics from tonight! Jared and Jaime were playing with Jared's helicopter in the house...and having a blast, too! :)

Happy baby!

Happy boys!

I'm gonna get it!

Still trying to get it.

Jared turning it off...Jaime wanting to still play.

And finally I end with a picture of a candle we have lit tonight on our mantle to remember all of the CDH babies and babies everywhere who have gone before us. Keeping our CDH Family, my friends and family members who have lost their little ones, in our thoughts and prayers, on this Pregnancy & Infant Loss Remembrance Day.

Pulm Appt.

2010-10-13T15:49:00.001-07:00

I took Jaime to the Pulmonologist today. It's funny, if someone would have told me a year ago that I'd be able to effectively navigate around The Cleveland Clinic main campus, I would have told them they were crazy! Well, here I am, knowing what building is which...and being able to go there all by myself. A few years ago I had to have some special hematology tests done there and I made Tom take me because the thought of going to that campus alone was overwhelming...not anymore...I'm getting to be quite the old pro! Unfortunately, University Circle and Cleveland are now frequented areas by me (and Jaime)...a far cry from the days where my father drove me to The Cleveland Institute of Music for lessons, even though I could drive...remember those days, Dad?!?
Anyway, we went down there late this morning. We rode the elevator up to the 12th floor to visit our favorite pulmonologist. Jaime just adores him! He checked Jaime out saying the he was impressed with how his lungs sounded considering his x-ray didn't look great. He was pleased with how well Jaime is handling this illness overall. He's still a happy-go-lucky little boy!
Jaime's x-ray showed streaking in both lungs, indicating an infection. The Pulm said that being on the antibiotics and steroids really helped the infection from going into a full blown pneumonia. The other area of concern was that both lungs have been affected by this infection. Jaime's pulm. is confident that continuing the antibiotics and aerosols (6 treatments a day of 2 different types of medication) that Jaime's little lungs will be on the mend. So, that's the plan! We'll be following up with him in 2 weeks...sooner if Jaime doesn't get better. We will also be back at the ENT's office on Tuesday since we'll be off of antibiotics by then. Jaime's ears are still bad according to his pulm. today...not that I expected them to get better overnight, but one can always dream! ;)
That's about all for the update, I must get back to doing homework! I left the house to get some work done uninterrupted (not to mention, getting it done at a reasonable hour, meaning doing it before midnight!)

Before I go, please keep Baby Ava in your thoughts and prayers, she is due on Friday and her parents recently found out that she will be born with CDH. We all know this is a horrible, devastating birth defect, I'm sure her parents would appreciate any positive thoughts coming their way. She will be born in Texas, where our dear friends, Stephanie and Shawn, delivered their twins last year. Thank you!

ENT/ER

2010-10-12T18:07:00.000-07:00

Today was our infamous ENT appointment...it didn't go exactly as planned. Jaime's been coughing a lot over the last two days...with that he's been gagging and throwing up. Last night, Jaime coughed, gagged and threw up a few blood clots. (gross, I know!) Being a hemophiliac, that prompted a call to the pediatrician. She told us to watch him and if he got worse to bring him to the ER. We finally got him calm and to sleep, but about 3:00 A.M., he was wide awake...actually the whole house was because of his coughing. Poor little guy, nothing made him feel better.
On to our ENT appointment...lo and behold Jaime's ears are STILL infected, even after being on antibiotics for over 2 weeks. Tubes will be in Jaime's future, but they can't do them until his ears are clear. The ENT ordered a stat hearing test just to see how much, if at all, the fluid has affected his hearing. Well, it wasn't good news. Jaime's results show that he has significant hearing loss. This may or may not get better as his ears start to improve. Only time will tell. It makes sense considering he hasn't been speaking very much at all and has no new words, in fact, he has less now than before. His speech therapist and I have been talking about this debating if his lack of speech was because of his ears or because he's been focused on walking...now we have our answer.
While we were there, Jaime's lungs didn't sound very clear, so the ENT called Pulmonary who requested that we go to the ER. So, we packed up and headed to CCF ER. It was the first time we've ever been to that one. It was nice, they took us right away...in fact, we were told that they were expecting us and saved a room. After vitals, the resident and ER docs came in...we chatted, Jaime went to x-ray...and then we waited. His x-ray came back hazy, but he's on an antibiotic and breathing treatments...vitals were stable, so after several hours, we were discharged home. We are due to follow up with Pulm in the morning.
Oh the last little bit of info to share is that Jaime has lost over a 1/2 lbs since Friday. He's only 22lbs...and that was fully clothed with a diaper. He was 22.08 on Friday in just a dry diaper. So, that's something else we're keeping an eye on.

OK, after saying all of that...you'd think this kid would be crabby and mopey...well this IS Jaime...while he DOES have his moments, for the most part he's happy as a lark! These pics are ones I took tonight. Other than a bloodshot eye (either due to a burst blood vessel or infection...no one is really sure)....he looks OK...maybe just tired. Jaime sure does love his big bro!

Happy boys!

Relaxing in the recliner!

Jaime crossing his legs like Jared.

I love their smiles! Jaime was rolling into the chair playing peek-a-boo.

Jaime literally climbed on Jared who was sitting at the table doing homework!
(Notice the red right eye?)

The only other happenings today is that it would have been my Grandma Buttari's 91st birthday today. (Many of you know that my Grandma and I were very close, she passed away in 2007 after a long battle with cancer!) We've always celebrated her birthday with her...and continued to celebrate her life every Oct. 12th. Jared picked out a cake for her tonight, he even sang to her, he really misses her, too. He sure was her little buddy!
Here's to you, Gram, not a day goes by that I don't think of you! We love you and miss you so much!

Jared specifically asked for it to be written on in all of those colors!

Proud of Grandma's cake...he sang to her after I took this pic!

Jaime enjoying a few bites of cake, too!

OK, I'm off to bed, I haven't had much sleep at all in the last 3 nights. I will try to update more tomorrow night...until then...

Update & Jaime misses Cincy!

2010-10-09T16:57:00.000-07:00

Jaime had quite a bad night on Thursday....waking up, screaming in pain. :( He threw up, too. I wasn't able to get Motrin in to him because he was gagging on it, but I did have my handy dandy Tylenol suppository back up. I hate giving him medicine that way, but truly it was the only thing that helped him. So, on Friday morning I called his pediatrician...she wanted to see him right away. She looked at his ears and said that if I hadn't have told her that he had completed a 10 day course of antibiotics, she would have never known. She said his ears are so bad, "bulging, bright red and full of pus." The crazy thing is, other than a few "bad" moments here and there, he's doing well. He was even being a little ham at the drs. yesterday...it was the first time the pediatrician and her nurses saw him walk....they were laughing and running up and down the hall with him, it was quite comical! Sometimes I forget that we're seeing a dr., she's so silly!
While we were there yesterday, she humored me and ordered a chest and abdominal series. She asked if he was reherniated again because his "bulge" was high and popped out. The x-ray showed that he was full of poo! Poor guy! So, we've concluded that his incisional hernia must be getting larger by the size and shape of it. We'll be seeing the surgeon (well one of his partners) in December. He didn't eat much on Wed. or Thurs, but did OK yesterday and well today...he ate 2 French toast sticks for breakfast with some apple juice, he ate about 1/4 cup of melons (watermelon, cantaloupe, and honey dew), and for dinner...well see below! Hence the reason Jaime misses Cincy! HA!

Tonight's dinner was the very first time ever that we took Jaime out without any food or drinks of his own. (In fact, I didn't even bring a diaper bag at all!) We knew he'd eat Skyline and since he learned how to drink through a straw, we got him a kiddie cup of water. Talk about a stellar eating day! :) No, his ears aren't better, he's still tugging on them a lot and whimpers while rubbing them on and off, but like I said, you wouldn't really know he wasn't feeling well. We'll be at the ENT's on Tues, everyone seems to think that tubes are in order, so we'll see!
More later...enjoy your weekend!

Quick Update/Fall Photos

2010-10-07T17:08:00.000-07:00

Fun Fall Photos from last weekend!

Jaime's 1st Fall Fest and Halloween Preview pics.

So, Jaime is a full time "walker." He's doing well according to his therapists. We are, however, still awaiting his leg braces and next week he will be fitted for a thumb brace for his right hand. We're going to privately order that and not go through insurance because it will take so long and he really needs it now.
As for eating...he doesn't seem to mind textures anymore...it's really just a matter of volume. Somedays he eats better than others. His speech therapist and I were talking today about him maybe going to the CCF feeding clinic sometime down the road, but not right now.

As for his most recent illness...he's better, but still tugging on the right ear. We're due to go to the ENT on Tuesday morning, so we'll see if it's still infected. There's also been mention of Jaime getting tubes in his ears...we'll see, though. Jared had way more ear infections than Jaime and has done just fine without tubes. Although from what I understand it may take longer for Jaime's tubes to even out because he's so little and it may help with his speech which is pretty developmentally behind. I don't know much about the ear...so we'll let the experts decide on the right plan of care for him.

That's about all for an update. I'm super busy with my senior semester and working 5 days a week makes things difficult. Extra minutes to post are very few and far between. Soon, though...10 weeks and I will be done with school. God-willing, I will get passing grades and be done for good!

I'll do an update after the ENT next week! Until then....

The Results are In...

2010-09-28T17:41:00.000-07:00

Other than the labs showing that Jaime is "dry" (dehydrated) everything else is negative, including the stool labs. The dr. called this evening to check on Jaime. I told her that he's still super cranky and slept the entire time his new nurse was here which was over 3 hours. We talked about his labs and she noticed that the lab made an error...apparently they were also supposed to be testing Jaime for Celiac Disease. I was completely unaware of this, but the Pulm. said that the lab order was in the computer, but not processed. Hmmmm...she told me to call the GI dr. tomorrow to see if I should take Jaime back for the additional labs. I guess the thought of that really never crossed my mind! I'm also slightly frustrated that Jaime may need another prick because someone didn't fully do their job! ARGH!
Anyway...that's all for tonight. Hoping he's feeling better and starting to show signs of hydration really soon! He's drinking, but I think he was so dry that it's taking a while to fully hydrate him again.
I'll update if things change!

Sick Little Boy...AGAIN!

2010-09-27T18:01:00.000-07:00

And so the CDH roller coaster continues...
Jaime had a scheduled pulmonary appointment today, but as usual it was anything but "routine." I initially set up the appointment because with the weather changes, I found he's that he's wheezing more. Turns out he started getting sick over the weekend and by the time we got to our appointment today, Jaime's "well" visit took a turn into a "sick" visit. Jaime has double ear infections and bronchitis. He received two breathing in the drs. office for his wheezing and was given a total of 5 Rx's. 4 of them for his breathing alone, an antibiotic and a medication for his bowels. We were told to follow up with ENT about Jaime's "frequent" ear infections in 2 weeks. Also, when he has the slightest sign of a respiratory infection, we are to call Pulm. for treatment which will most likely include steroids. The dr. feels that even though the infection started in his ears, they are draining and the drainage settles in his chest. The best way to make him feel better the fastest is with steroids. If he wasn't born with CDH things would probably be way different as far as illness protocol!
OK, let me back track a little, Jaime's been having diarrhea for over two weeks now. He didn't have any symptoms of being ill, just the diarrhea. We gave it some time before calling the dr. I called last week, our plan was to "watch it" and touch base again this week. Over the weekend, he was irritable, wasn't taking much to drink and was coughing/gagging and throwing up on what little he was "eating." This became a concern on Saturday, especially when he spiked a fever. The thought of going to the ER came up, but I was trying to wait it out until today knowing that I had this appointment scheduled already.
Back to today...while at the Pulm. I was telling her about his diarrhea, too. She was very concerned about this...so much that she told me I had to see GI today as well. At Hillcrest (where I took Jaime) they have a Cleveland Clinic Children's Specialty Care office. This is a time share office of multi-disciplines. Ironically enough, not only was it pulm's day, it was GI's day, too. So, we hung out to have GI see us, too. She ran some labs on Jaime (blood and stool), we, of course don't have those results yet, but I imagine we will by the end of the week. There may be a chest x-ray in Jaime's future, too...just to make sure things are where they are supposed to be...reherniation is always in the back of our minds! We spent a total of 4 1/2 hrs. at Hillcrest today, needless to say, I ended up having to call-off of work...actually Jaime and I walked down to my office at 12:45 to let them know I wouldn't be in at 1. It kind of stinks having to do that, but I didn't really have a choice today not to mention that Jaime and Jared will ALWAYS come first!
As for stats today Jaime is STILL 21.08 lbs. I guess the good news is he hasn't lost any weight, the band news is he hasn't gained any either. He was also measured at 31.5 inches tall!
That's all for now, I will try to update the results as I get them! I've been pretty busy with my 4 classes at school...and work...and Jared, who by the way started ice skating lessons again Saturday! :)
Here are a couple of pics I took this weekend on my cell!

Jaime and I with my new curly do!

My two favorite boys! :)
Not the best quality...it's from a cell, what can I say? :)

Happy Fall, All! :)

If at first you don't succeed.....

2010-09-18T18:35:00.001-07:00

try, try again! :)