A Proper Update!

OK, so I logged in to update Jaime's blog and I see that the Blogger Website itself has changed (soooooo much) since I've last posted! Wow! I hope this posts right and goes out to the emailed people right! I apologize in advance if it doesn't! I HATE doing a large long drawn out update, so I'll try to hit the highlights, of course this is ME and I like to write, sooooo I won't make any promises! ;)
OK, on to the update! Since my last post, Jaime has been very busy! I posted the day after Jaime's 3rd birthday in April. Shortly after that post, Jaime had some post-op bleeding issues. He bled for a total of 16 days post-op ear tubes and adenoidectomy. I, personally, had to give him an IV infusion of factor one day. Needless to say, I was HORRIFIED...sticking Jared is nothing, but my baby....AHHH!!! I had to stick him twice, I lost the first one and kept the second one! OK, so I can check starting an IV line on a 3 yr. off my bucket list!(ps. just a reminder...I am NOT a nurse). The evening that I stuck him, the bleeding got worse, so off to the Hillcrest Peds ER we went. They started a line and we left it in for 1 week. Between the IV and oral meds, he was stellar and ready to go to school on May 2nd...over a week an a half later than anticipated.
School...WOW, what to say about that! Jaime didn't adjust as well as we hoped. It's just a very overstimulating situation for him, especially being a home-bound kid for 3 years. His teachers were very, VERY nice! I will say, I was less than thrilled with the lack of therapy made available to him and we did have some minor transportation issues. I asked for him to have an extended school year, but for reasons beyond my control, Jaime lost his spot in the program. So, I've been offered summer therapy from the county in which I will take just to keep him in the right direction for school in the fall. I'm also not 100% sure where he'll be going...he may go back to his home school in Wickliffe, he currently has a spot back at Broadmoor, but we'll see! Here are pics of his first and last day of school.

Jaime and Jared 1st day of school for Jaime.

Jaime and I the last day of school in his new glasses.

Moving on...Jaime ended up having a very bad respiratory infection in May. This caused him to miss a whole week of school. He was on breathing treatments, antibiotics, steroids and cough medicine. I WAS able to keep him home and out of the hospital the whole time, but that was because I have Atrovent here. Jaime had to do a few Xopenex/Atrovent treatments back to back every 20 minutes over an hour. I'm so glad to have a mini "NICU" at my house! =) Also, Jaime had his ears rechecked from his surgery and all is well! There was still some residual dried blood in the canal, but overall placement was great and his hearing is OK! Here is a picture of sick Jaime being such a good boy with his aerosol treatment.

Jaime getting Atrovent/Xopenex.

 Now on to June...you know how they say that March comes in like a lion and out like a lamb....yea, that was my June. (Hoping it goes out like a lamb). The boys finished up school last week! Jared's last day of school was CRAZY! I had a doctor appointment for myself. When leaving the drs. office, I received a call that Jared had gotten hurt at the end of the year picnic. I ran from Case in Cleveland to Wickliffe to check on him. He had fallen on the concrete slab at the spray park and needed IV factor. I gave him his factor and then let him go back to playing. He's OK, just scraped and bruised. Then, while at the park, Jaime's  PT called me...she wants Jaime to go to a rehab dr. because he's still a toe walker and when he walks on his heels, he shuffles...his overall "gait" causes him to fall often (hence the significant leg bruises in the above picture). She's also recommending one of two options...Botox injections into his calve muscles OR casts on both legs with intensive rehab therapy when he comes out of them to teach him how to walk again. I tried to schedule this appointment last week, but I was told they needed to check insurance and would call me back. I'm hoping they'll call on Monday. After the park, I took Jared back to the school for 4th grade clap out-Congrats to all of the WES 4th graders moving on to the Middle School! After clap-out, we came home to get Jaime and Tom to go to the dentist.
Ahhh, the dentist! This needs a paragraph of its own!
We saw the dentist last month for cleanings for both boys. Jared did AWESOME...no cavities, Jaime...not so much! All four of his front teeth have obvious cavities...and maybe more, we're not sure at the moment. So, the dentist wanted Tom and I to bring Jaime in for a surgery consult. During the consult she examined him and took additional x-rays, then she told Tom to take him and Jared out to play. The dentist and I talked about Jaime's medical history and a treatment plan for over an hour. Jaime's front teeth are so bad that all of them need something done to them from as little as fillings to caps to a root canal to an extraction. Of course, ALL will HAVE to be done under anesthesia. This causes a few problems....since Jaime's lungs are less than stellar, anesthesia alone poses a huge risk (as all of you CDH families know). With this being an oral procedure, Jaime has another risk involved that others don't...a huge bleeding risk, especially if his teeth end up needing to be extracted. Having said that, Jaime will have to be admitted for this dental procedure. Now, the pediatric dentist has a few options as to where this may take place. We talked about Rainbows, but there are several issues with that...the majority being that anesthesia wants clearance from all of Jaime's main specialists (pulm, hem/occ, card), but none of his specialists are located at Rainbows. So, that would mean getting to know a whole new crew of drs. who would be "guessing" as to what a good treatment plan for him would be. Then, there was talk of going to Southpoint of Hillcrest, both are Cleveland Clinic affiliates. Southpoint can't admit peds there...and anesthesia said no...and Hillcrest CAN admit peds, but they don't have Factor to manage Jaime's hemophilia and the dentist said the OR isn't as equipped to handle such a complicated procedure there. Now, the Cleveland Clinic has all of that, but the dentist doesn't have OR privileges there and peds OR dental procedures aren't routine there. Sooooo......that leads us back to Cincinnati.

Jaime practicing opening wide at the dentist.

Waiting to get x-rays with their led vests.

 Jaime has a few annual and follow up appointments scheduled there in Cincinnati in July, so we're going to try and coordinate a dental visit as well. Actually the Hem/Occ center in Cincy is facilitating all of that for us (thank goodness because when I called, I was told that they didn't have anything until August, but we need to see them sooner than later). The reason for urgency isn't because of the cavities, but because his teeth are actually starting to break. How did they get so bad you ask? Well, I do brush (scrub) his teeth several times a day, it's because he's a nighttime Pediasure drinker. Pediasure has soooooo much sugar in it. YES, we HAVE tried NOT to give him Pediasure at night, it just doesn't work. But, in light of all of this, we're trying again. The last 4 nights and day time naps, Jaime has been sent to bed with ice water. I've been making a point to give him a Pediasure sippy cup an hour before his bath, then just the water at night. He's still waking up several times a night crying for his "milky." I hope he gets used to it soon, I'm tired! One of the biggest concerns with dropping night time feeds is growth. I weighed Jaime on Wednesday, he was back down to 30.5lbs from just about 32lbs. So, I am carefully monitoring this. The last few days he's only drank 2-8oz. bottles of Pediasure versus his normal 5-6. This is a significant drop in calories considering that each bottle contains 240 calories....missing 3 of them is missing 720 calories...4 is 960. I'm very worried about his weight. Jaime still doesn't eat very well. He only minimally chews and won't take purees because they are "yuck" in his book and he'll do EVERYTHING to make himself throw up. Oh and yes, I've tried the high calorie juices and addictives, he simply doesn't tolerate them. It stinks! We're literally stuck between a rock and a hard place with him. If he eats a good amount of food, he almost always throws it up. Now, having said all of that....and not like she has a place to make this recommendation, but the dentist is recommending that Jaime get a g-tube. Of course, it's up to his medical drs. to do so, but I'll be monitoring his weight carefully between now and Cincinnati in July...and we will also be seeing GI/Surg when we go down there. GI was talking about putting Jaime on Erythromycin for motility...maybe we'll try this and re-visit the g-tube at a later date? Maybe they'll opt to place one...I simply don't know.
Stay tuned though...and I promise I'll be better about updating as things occur, it's hard to read such a long blog (let alone write one). Thank you all for continuing to keep Jaime in your thoughts and prayers along this CDH journey! All are much appreciated!

My skinny mini after swimming yesterday...see why I have to monitor his weight? He's a peanut.

 

On to "fun" news! My parents spent the Memorial Day holiday here in Cleveland. We threw a surprise birthday party for Jared (his b-day is June 14th, so it really was a HUGE surprise). We all just had a lot of fun bonding...from my nephew's soccer games, to having picnics with balloon fights, dancing at Tom's gig and ending their visit going to the Grandparents' Day Wax Museum Science Fair at Jared's School. It was a great time for all!

Connor's the one who just kicked the ball (not the goalie).

Jared's cake-pop/donut hole outer-space cake!

The kids with their water balloons, ready to attack the adults.

Jaime dancing on stage at Tom's gig.

At the school Wax Museum.

Final note...I'm still selling Thirty-One Gifts if anyone is interested in purchasing an item or hosting a party...please let me know. You can visit my website at www.mythirtyone.com/strost/ Thank you for your continued support and for reading this very, very long post! :)