physical therapy

We had our first physical therapy this morning at Texas Children's. Luke did NOT like it...not that I thought he would, but he did not cooperate AT ALL. I am so thankful that we are going to be working with a sweet therapist who was so patient with my emotional little boy. Her name is Kristin and she actually knew a bit about EB. She also knows our sweet dermatologist and knows another pretty influential dermatologist in the EB world. Oh and she knows so much about wound care! The weirdest part of all is that she was not supposed to be our therapist, but was filling in for our original one. She said she wants to take on Luke as her patient...not sure WHY after the way he acted...but grateful nonetheless. Thank you Jesus. I was praying for a sweet one!

The appointment started out pretty good. Luke crawled around and explored. He seemed pretty happy. Well, I am not sure what happened but he lost it and pretty much cried with big tears the rest of the appointment. It was hard to get him to do anything. I think part of it was me being there. I was his safety net whenever he got uncomfortable. Very frustrating. I hope I can stay outside next time!

Kristin seems to think he doesn't have much core strength and favors one leg. I knew about the leg because he usually puts all of his weight on the leg opposite of the foot that is constantly blistered so badly. Anyway, I asked her at the end of the appointment if she thought he would be walking by September, when he turns 2 and she acted like that might be pushing it but was hopeful. All we can do is make it through these sessions one at a time and hope to see improvement. I know I will learn a lot too so I can help him more at home. Greg said that he wants to go to a few appointment too. She said she wanted us to have some therapy sessions in the pool. That sounds great to me, but I really don't want anything negative to be associated with water since swimming is one sport Luke might be able to participate in. We are signed up for mommy and me swim lessons in May. We will see how those go first. :)

I brought my camera today but did not get a chance to snap any pics with the way Luke was acting. I do, however, have some new pictures on my camera and will post them next.

As far as what we have been up to...Greg found some great outdoor flooring mats that are Luke friendly. We bought him a sand and water table (no sand though) and he has loved playing in the water outside. The weather has been perfect so we are tying to enjoy it to its fullest before the heat wave! We are going to look for a little swing/slide set to go on the mats too to complete his little play area. I love watching him be able to crawl and push his push toy outside! He is so happy out there now with a softer surface to play on.

Pictures to come soon!