Sunday, June 13, 2010

First Day of Physical Therapy

Whew...........I could leave it there and trust me that would about sum it up, but I know you want some details so here they are.

James had a weird night. He couldnt settle in to sleep until about 12 and then the nurses came in to flush his IV at 2, of course that woke him right up. I crawled into bed with him hoping that would settle him down to get to sleep and it did until about 4am when the nurse came back in. He...and I, were awake at 4am and stayed that way. At 5:30 I gave in and just decided that we were just up for the day. So I got up turned the lights on and went on with the morning. He woke up in a good mood and was ready to color and watch his dvd's

At 9am the physical therapist came in to show me how to sit James up, pick him up, and transfer him to his wheelchair. This first try was just heartbreaking. James screamed with pain and fear of being sat up in bed. And then when he was moved to his wheelchair it got worse. To the point he turned blue and the PT decided that he needed to be moved back. All about a span of 4 mins!!

By the time we transferred him back to the bed, he was zonked how, breathing, but just wiped. He feel asleep and took a nap until 12:00. We gave him lunch and then it was time to start the transitioning for the afternoon PT that was downstairs in the PT gym.

He screamed when I got him up and in his chair but away we went. James crying the whole way. We arrived at the pt gym and our PT Robyn was waiting for us. She was very nice and explained that more than likely James would cry through the whole session. GREAT!!!! :-( The gym was the nicest pediatric therapy gym I had ever seen. They have every possible therapy tool you could ever want. How I wish we were close so that James could receive PT here for a bit longer!

The session started and James screamed. She showed me some of the stretches that I am to do everyday. I tried to distract James with some of the new toys they had and he started to calm down. He LOVES drums and they had a few the peeked his interest. So he was already showing her just what a trooper he was. And he didnt stop there.

Now all the things that I am about to tell you are things that James could do Pre-Op BUT he was doing them either incorrectly with the coping skills he developed or he was using the wrong muscles/tone to do them. Now that he woke up with a brand new body, James has to relearn how to do everything again.

She showed James how to roll onto his belly. When he was on his belly we worked on how to get into a hands and knees position. He really worked but finally was able to do it and stayed there for about a min! He would get into a position and then have to lay back down to rest. His goal before we leave is to bench sit for 5 min, and he did 2 min! The pt was very impressed! He showed her lots of strength that she said was great to see. The PT told us that she thought James looked excellent and was really on track ! Good to hear :-)

After Pt we took James to the playroom and he got to look around and get a sticker. We came back and let him rest for a bit. Later we tried to transfer him again and he did ok. He cried again but I know that it will get better each time we do it. The hardest part for me is making sure I am positioning him correctly. I am so used to just grabbing him up and everything . Now I really have to go slow with him so that I keep his back as straight as possible.

We have MANY restrictions on how we can and can not move James. So many that it makes you want to just let him be still. I know I cant do that but the thought of hurting his spine is scary! I did learn in PT today that a lot of his crying is fear on James' part. He knows that some movements are painful and cries before you even make the movement. I am sure it has to be frustrating to not understand why all of the sudden you can move your body like you are used to. I just hope I can help him work through these frustrations easily and smoothly.

We will have PT again tomorrow twice and then after the morning pt on Tuesday it is time for home! PLEASE pray that James will handle the car seat ride well. I am worried about this but there is nothing i can do about it and many people make this trip and are just fine. I know we will be too :-)



Poor James! I hope that the transferring and moving will get better for him soon!


Wow what a busy day you have had! Sounds like James is doing great and progressing well. Prayers continue for easy transitions and PT to become easier for him. Hugs

Sharon Glenn

My prayers, of course, are for James. However, MaryEllen and Josh, I pray for the both of you. I know it is so difficult to feel like you are causing James some pain....I know you know, that this pain will soon be gone and his strength and stamina will grow!! I pray for ease on your nerves through this transition. I am sure James will do good on the way home!! He has ALWAYS amazed and will continue!!!! Love you ALL!!!

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