Upcoming OR/Admit....

Once again in Jaime fashion...a lot has happened. Jaime's ENT in Cleveland agreed to replacing Jaime's ear tubes...and taking out his adenoids. While this would be "routine" for just about every other the kid...the simple fact that Jaime has hemophilia makes this a bit more challenging. Jaime will actually be admitted after the surgery for up to 3 days...depending on how well he does. He MAY be admitted the night before surgery, but we'll know that as it comes closer. Right now, Jaime is set to have pre-admission testing on March 12th which will include, a pulmonologist visit, an echocardigram, EKG and visit to a cardiologist (first time ever at the Clinic, our "real" cardiologist is in Cincinnati), and a visit to the hematologist which will result in even more labs. Now, the last time Jaime saw Hem/Occ he had his internal bleed and was severely anemic. This is a concern, because depending on what his labs are will depend on whether or not Jaime will even go to the OR. Surgery at this point is scheduled for April 9th, the day after Easter. That day can't come fast enough, Jaime complains about his ears every single night. I just hope that all of his testing goes well and we can move forward to recovery!

Other happenings....Jaime's been having lots of evaluations by the school district to plan for preschool. At one point we had everything set up for Jaime to go to preschool at Broadmore, the special needs' school, but then we talked about Jaime going to the public preschool. Jaime met with the school's PT, SLP and teacher this week. I was really glad that they were able to see Jaime relatively healthy to get good evals on him. We are meeting later this month to go over all of the evals and have a final meeting for placement. I do know that Jaime fell at about 10% when compared to his peers from a PT standpoint. He's still pretty far behind in many ways. Some of the bigger things are his attention which is horrible. He literally bounces from one activity to the next. I imagine that at some point later on down the road Jaime will be diagnoses with ADHD (Attention deficit hyperactivity disorder). I was told that kids with hypoxia (lack of O2) have a higher chance of getting it...as do preemies...Jaime having both gives him pretty good odds that he'll end up being diagnosed at some point with it. He's active, just doesn't stay on one task for long. He also tends to poop out sooner than most in more intense activities. All we have left is for the OT from the school to come and evaluate Jaime, then we'll make future schooling plans.

Final things going on with Jaime...he continues to have bowel issues. Yesterday he was begging for "help" because he had to go. "Help" means a suppository or enema. I hate when he gets like that. Then when he does finally "go" he usually ends up throwing up, too. I guess the frustrating part is that even though he went to the OR in January (and that ultimately ended in him having a bleed), other than knowing Jaime's digestive system stinks...nothing much has changed. He is not eating any more than he was, he's still vomiting and he's still getting pretty constipated, I think this is just Jaime's constant battle to fight! :/

Before I go, I'd like to remind everyone that I'm a Thirty-One Gifts consultant. So, if you're ever in the market for a cute purse, tote, lunch box, wallet, scarf, clip/pin, apron or baskets...I'm your gal to come to! Not to mention we have amazing monthly specials! This month's special is spend $31 get a Mini Utility Tote for $8 (reg $22). These little totes are perfect for Easter Baskets and can be monogrammed, too! To get yours go to the following link http://www.mythirtyone.com/STROST/ ...orders can be made anytime, you don't need a "party" to buy, but if you do want to host a party of your own, you'll get your share of amazing free products! Let me know!

P.S. Don't forget to wear your turquoise on March 31st to show your support and spread awareness for CDH! Jaime and all of his CDH buddies, thank you! Notice any of the familiar faces in the pic below?!? ;)

Another Month has gone by....another pending trip to the OR.

I hate making long updated posts, but it seems as though that's what I've been doing. So here's the scoop over the latest month.
In my last post I told you about Jaime's internal bleeding. He's been MUCH better since then. We kept the IV from the the hospital in for a week...I was giving him his IV factor 1 to 2 times a day, along with his oral medication to stop the bleed. He's still very pale from being anemic and he's still on iron, but otherwise pretty much recovered from that little scary episode.
I'd LOVE to say that Jaime is doing GREAT and is healthy as can be, but this IS Jaime...we all know THAT'S not true! :/ He currently has another ear infection...this makes like 5 since November. If you remember we went to the ENT in November only to find out that Jaime's left ear tube was stuck in his ear canal and not in his ear drum. Since then, it's been one infection after the next. While the ear infection has nothing to do with CDH...the fact that the ears drain down that throat poses a whole different issue. Jaime is constantly coughing and gagging...even throwing up. He was coughing so bad last night that we were back to breathing treatments. He's a bit better today, as he's now on day 4 of this round of antibiotics. (We went to the pediatrician on Thursday to confirm the infection). We've been in touch with ENT for the last several weeks. They told me in January that Jaime's working on getting another set of tubes. Well, here we go, Jaime's got an appointment with ENT on Tuesday to "plan" an OR date for new tubes. We just don't want him to lose hearing again like he did in 2010 before his first set of tubes. ENT was also going to check with Jaime's pulmonologist to see if we need anything else done to take advantage of anesthesia. I'll keep everyone posted as to when all of this might happen. I hate the thought of Jaime going back to the OR...but, I also hate him being in so much pain from his ears...he's a mess when he has an infection.

In other news...Jaime had a mini evaluation for school. Well, really it was the Help Me Grow coordinator, school psychologist, Jaime and me. We talked about his needs for preschool. A few months ago I decided that maybe Jaime should go to Broadmore (a school for children with special needs), but after much discussion with Jaime's current therapists, we all felt that maybe a more mainstreamed school environment would be best for Jaime. So, Jaime will be attending Wickliffe Elementary School's Preschool Program in the Fall. Of course having said that...he will also be needing a nurse at school and will only be starting at maybe 2 days a week rather than the "normal" 4. Additionally, he will only be going during non-flu season months (Aug-Nov and Mar-Jun). The reasons for all of these are because 1) Jaime hasn't had a healthy month yet in his 34 months of life; 2) his medical status is very unpredictable, he can go from stable to critical quickly (all from a respiratory standpoint); 3) he still requires O2 and pulse ox monitoring; 4) he still doesn't really know how to eat (chew) and gags frequently which causes him to throw up often; and the final reason for all of these accommodations is that with Jaime being so medically fragile, we simply don't know what kind of stamina he'll have, as he often peters out after a 45 minute therapy session.
Now before all of this school stuff happens, Jaime will still need to be evaluated by the school's therapists for speech, PT and OT, all of which he'll receive either in school or at home if he qualifies (which I have no doubt that he will). We will also have to work out the logistics of Jaime going to school with a nurse and making sure we have the right equipment at school (O2, pulse ox, IV supplies). Also, Wickliffe is not air conditioned. This is something that must be added in order for Jaime to attend. He simply can't tolerate the heat (as most CDH'ers can't) and humidity is awful for him. He needs a climate controlled environment. It's a very costly accommodation, I just hope the school will be able to accommodate him in this way. The worst part (and I made this known to the psychologist) is that this A/C requirement isn't going to go away after preschool. So, I'm not sure how >the school will handle this. We'll just have to wait and see. Until then...once Jaime turns 3 on April 16th, he will receive itinerant services, meaning the therapists and teacher will come to our home to work with Jaime to get him ready for an in-class environment. This will also occur during the time Jaime will be out for the flu season. I think Jaime will really enjoy school once he gets the hang of it. I just want him to be safe.

Just wanted to remind everyone that CDH Awareness Day is just around the corner...on March 31st. I took the initiative to send proclamations to our Mayor and Governor. I immediately heard back from Mayor Margarlis, of the city of Wickliffe who agreed to sign the proclamation. Here is a picture of the document he sent me.

Wickliffe, sport your turquoise on March 31st and tell someone why you're wearing that particular color that day to spread awareness about this awful birth defect.
I haven't heard from the Governor of Ohio yet, but I still have hope! I also know that I'm not the only Ohioan to send a CDH proclamation in, so it's just a matter of time now! :)
As promised, a picture of Jaime in his brand new glasses. He keeps them on and they really do allow for him to have better eye control. Not sure how long he'll need them, I guess we'll just wait and see. Jaime has a follow up appointment with the ophthalmologist in April.

Something I rarely do on here, but I'm going to take a minute to talk about myself. If you'll recall just before the holidays I accepted a new full time position at UH. Well, in the end, I turned the offer down. I just didn't think that it would work with Jaime's medical needs. Then, I talked to my nurses who agreed to be here 5 days a week and I was offered another position, one in HR at UH. Problem with that is it wasn't the salary I was looking for...soooooo, after much toying with the idea...I've decided to stay part-time in my current position at UH and become a consultant for Thirty-One Gifts. Please feel free to check out my website.
http://www.mythirtyone.com/STROST/
There you will see what types of products I will be selling. I'd love for you to join me in this new business adventure and host a party of your own. Anyone who does will receive a free hostess gift. Also, to let you know, I am currently hosting an ONLINE PREVIEW PARTY, this month's special is spend $31 and get any item 31% off. This link will take you right to the event shopping page.
http://www.mythirtyone.com/shop/eventhome.aspx?eventId=E1458487&from=MYEVENTS
Additionally, I will be raffling off all of the hostess benefits with all of the proceeds going to Carter's Caddies. Jaime and Carter Adler did "time" together in the NICU fighting CDH. Carrie, Carter's mom sent up a donation for the NICU at Cincinnati Children's Hospital to spread awareness about CDH. They are Thirty-One Littles Carry-All Caddies (Product #3401) filled with all sorts of neat items for babies and parents in the NICU. She delivers them right around the boys' birthdays in April. It's a really neat way to give back! So, I hope you'll join me in this very unique fundraiser. Tickets are $5 a piece or 6 for $20...remember, the more you, your family and friends order, the better the hostess benefits will be, so ask your peeps to help us out!
Final plug for Thirty-One Gifts, they make wonderful gifts for Easter...as we have many baskets and smaller items perfect for Easter....something to keep in mind when ordering! Feel free to email me with any questions you may have! THANK YOU in advance for helping me with my new journey!

Before I close, a big shout out to Jared's Wickliffe Recreation Basketball Team, "Arizona" for coming in 2nd place in the tournament yesterday. The boys all played great! Congrats to all of you!