Therapy!

I'm not sure we've ever had a dull moment on this CDH Journey that we now call..."Life!"

Jaime started pre-school last week! Those of you who are my Facebook friends were able to see Jaime's 1st day of school pics! He's done OK, for the most part. He only goes on Mondays, Wednesdays and Thursdays. Those were my days chosen for him based on our nurses as he go to school with a nurse. The bus pics him up at our house and drops him off after he's done, he's gone for about 3 1/2 hours a day. Today was day 4! Day 1 he did great, was a little apprehensive, but his nurse and I were with him for an "orientation" day!  Day 2 he screamed his little head off, but only after the bus pulled up, Day 3 was PERFECT and then there was today....he cried when getting on the bus! :( He just needs to get used to doing all of this. He did wake up very early today and he was breathing hard...he's "fine" just has fast respiration. I'm hoping and praying that it's just weather-related and not an indication of him getting the "ick!" We have surgery scheduled in Cincinnati for Tuesday!

Waiting for the bus.

Crying as the bus pulled up!

Getting on the bus for the first time!

 OK, why did I entitle this post "Therapy?" Well, Jaime's had LOTS of it this week! The school has worked out a really great system (that I hope stays in place all year) where I take Jaime to school on Tuesdays, but only for therapy. This was our first week! I took Jaime to school on Tuesday and he had physical therapy, Occupational therapy and Speech therapy. Then, I brought him home and he had his home care speech therapist here. Jaime has a new one at home. She's working on feeding. We're trying all sorts of new textures. I know that must sound weird to some, being that Jaime is just about 3 1/2 years old, but such is "life" for us! He's been doing extremely well with his home therapist, he lets her do all sorts of in-mouth sensory things! We're still working on chewing and volume! He still does not take a lot of volume! And when we were at school the other day, he wanted to be weighed in the nurse's office...he's STILL 31lbs! No weight gain in months. I imagine he will lose more next week after his oral surgery! :(
OK, back to therapy! Jaime went to school yesterday, but after school his home PT came over. If you all remember, Jaime recently got new AFO's. Well, after day 1, he had horrible blisters on his heels. We had to get the AFO's adjusted and then wait for the blisters to heal! He's ALMOST healed, but enough to try the AFO's again. Yesterday, Michelle (his PT) came over and we all played in the yard while Jaime was learning to walk/jump/play and just move in his AFO's. He was so cute! Here's a fun sequence of pictures from yesterday's PT session!

Jaime sad because he was having trouble moving.

Michelle telling him it's OK! (Notice how he's standing)

Michelle telling Jaime to march with her!

Trying really, really hard!

He had just "ran" back to me from the garage! This was HUGE!

Jaime has a long way to go to build up the tolerance and endurance of wearing his AFO's "full time," but he'll get there. The whole goal of the AFO's is to stop his toe walking. So, we'll be working towards that goal...maybe by 4 years old he'll stop walking on his toes! ;) Final piece to therapy...Jaime will be having OT after school today! He still has many OT and Speech goals to meet, but for the most part he's starting to achieve his PT goals. Since he will be getting PT at school weekly, Michelle has said that she's officially "discharging" Jaime from her services! I LOVE Michelle, but I LOVE the fact that Jaime gets SOMETHING discharged! :) A big day for Jaime!!!!!!!!

Final note to report...a HUGE THANK YOU to all who donated to Jared and Jaime's Hemophilia Walk this year! The team raised close to $2000! Money that will be well spent, directly impacting the boys' future hemophilia needs!!!!  Also, thank you to those who walked with us! It's always a fun day! We also wanted to share with everyone that we won the t-shirt challenge again, as having the best team t-shirt design!

Here's our 2012 Hemophilia Walk Team!

That's all to report for now! Please keep Jaime in your thoughts and prayers next Tuesday as he is scheduled to undergo oral surgery-not a big deal for many, but you add crummy lungs going under anesthesia and hemophilia in the picture and it becomes extremely risky! 

P.S. A new catalog is now available for anyone interested in Thirty-One! Just let me know and I'll send one your way or feel free to visit my web page at http://www.mythirtyone.com/STROST/. September's Special is spend $31 and get ANY ITEM for 31% off...stock up now for the holidays! Also, new hostess and booking bonuses available...so book your party soon! :)