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Saturday, June 26, 2010

Update on Progress

I will get back to the picture post in a bit but I wanted to document what is going on in our lives right now. I feel like things are going by so fast that it is hard to find the time to sit and type it all out. But I use my blogs as a place to document our lives, almost like a baby book for James. So I wanted to get some of his progress down. James is just amazing me everyday. I know people wonder why I walk around with me chin on the ground, but it is because I am in awe of this little boy.


I mean this picture that you see above might to you just look like a kid sitting watching TV. And on the surface it is BUT to me it is 2.5 years of tears, PT,OT , and LOTS of tests. To me this sit is a victory. It means that my son will be able to join his peers in circle time at school. It means the first step to independence



I have said it before, and I will say it again, I am a self professed Momma Bear. I will be the strongest advocate for my son that I can. I am not always popular with therapists and some frankly just dont like me. I have learned to agree to disagree with some and other we have moved on to greener pastures. But when I see sights like this I know that all those meetings are worth it. I guess some would say that the teacher that gets my son is in for but I dont think so. I hope I am the type of parents that I always wanted in my classroom. One that loves their child and wants them to succeed in life. A Parent that will help the teacher give their child the tools to make that success a possibility. BUT I do expect all that work with my son to be striving for success and if I have to make sure we stay on track so be it ;-)



Several people have asked me where we receive physical therapy. That is a complicated answer, but here is the short answer. We receive PT and OT with United Cerebral Palsy and Huntsville Hospital Pediatrics. All of our therapist are so wonderful with both agencies. We go to different agencies because each place has their own philosophy. And each has a different style. I like for James to get the best of both worlds. There are things that I love and things I dont like with each agency so in my opinion when we go to both we get a more well rounded therapy program.



James has started his 5 day a week program.



-On Mondays we have a therapist come out to the house and that is great because it is one day of the week I get to stay in my pj's just a bit longer ;-) James too!



-Tuesday and Wednesday James receives Physical therapy at 10 and right after he gets Occupational Therapy.



-Thursday James gets PT and then Speech therapy right after



-Friday Is WATER day. He and I both look forward to this. It is physical therapy in the heated water pool. Aghhhh!



All of these therapies are in the morning. After James' nap, I do his home stretching program that we were given from St. Louis and then before bed he does his treadmill therapy. If is sounds like a lot, that is because it IS. By Friday I am lucky to be able to say my name and little James is pretty tired too. So Saturday and Sunday are rest days!! I do some stretching but try to make it VERY fun for him so he doesnt even think he is working.



So far James's speech has improved leaps and bounds. His speech therapist said that she is amazed and feels that James is making more age appropriate sentences. He is clearer and I have noticed stringing more words together post op. In PT we are struggling with James putting weight onto his feet. We think that he is still having nerves pain in his feet but that is normal and is supposed to get less and less each week. That has seemed to be the case so far. Everyday James shows more strength and that he is more willing to apply pressure to stand.



James is also able to reach his hands above his head now. If you are on facebook you saw this cell phone pic I took..




Again it is another milestone! Pre-op his arms would stop about shoulder length but now he can get those cute little arms way up to the sky! On the walking front....we knew that the SDR was the starting point for James' journey. And that is so true. James is young and so his willingness for therapy can make things difficult right now when he doesnt know what is going on with his body. But he is such a hard worker that he tries everyday. I think that alot is fear. He doesnt believe that he can hold himself up and doesn't understand how to move these new muscles but I know he will get there in time.

We are 2 weeks and 2 days post op and I am SO impressed but how many improvements James has made so far. I cant wait to see what the next week holds for us.


4 comments:

Jill

Wow, sounds like James is doing wonderful and how exciting on sitting indian style! :) Are you watching Blues Clues? ;) All this hard work is paying off, you are one strong boy James! Hugs.

I luv my Life as a Wife and Mommy

Way to go Little Guy!! You are doing so GREAT!!

Holly

James is doing just awesome!!!

Gmama

Speaking as a former teacher and not his Grandmother, this sitting position is HUGE! This skill will allow him to be a part of a regular classroom, to sit during circle time, listening to stories at school and church, and just to be able to sit outside in the grass!! I never realized how important the simple act of sitting could be! James, is amazing everyone! Tonight, when I bathed him, I could sit him beside the tub while I got his bath water ready. he was a little unsteady but unlike before he could catch himself and remain sitting!!! I love him so much, I could eat him up!

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