Friday, April 24, 2009

This is gonna be a long one.....

James had his pt evaluation today and I am in l-o-v-e with his therapist! She is more than I could have ever hoped for personality and knowledge wise and she does in home care which makes it sooooo easy for me. At first she asked tons of questions about his prematurity and any medical conditions that he has. Then she gave him some toys and watched how he played with them. Like, if he could put the blocks in the cup and then dump then out, if he can throw a ball and how he throws it, if he uses both hands properly (he does), if he could put the peg in the hole (it took him a few tries but he got it!) and things of that nature. He did everything wonderfully and she said that his problem solving skills and object manipulation skills are great. With everything that he does, he is operating on the 14-16 month scale so at this point he has no developmental delays. That may confuse some of you since he is 18 months but remember, he was two months premature so developmentally he is only 16 months and boys are usually 1-2 months behind that so........She was very pleased to see how well he uses his left leg to climb into chairs(yeah, we've kinda out grown the Elmo couch around here!)which leads her to believe that his problem lies just from the knee down. She was also pleased to see how well he is walking around. She tested his muscles to see how tight they are and said his left leg is really, really tight. She showed me 3 exercises to do with him and I was so excited to see that the first one she showed me was the one that my sister showed me and I've been doing it on and off with him for the past couple months! At first she said that he will definitely need to be fitted for a brace that he will wear from about mid-calf down and that will help give his ankle support so he can start putting weight on it and it will also stretch the calf muscle out. Then maybe we could do some botox injections later. After working with him for a while she decided that he probably needs to have the brace and botox at the same time, that that will benefit him more since his muscle is so tight.
Even though she said right now he has no delays if he doesn't get the therapy he needs he will in the future, especially at this point in his life. The time between 18 months and two years of age is so crucial because there is so much development in that time period. The neuro also told us this and that is why I have been on pins and needles these last two weeks waiting for therapy to start. I can breath a little easier now! One of the first questions she asked was if I understood that CP has a very broad spectrum. She asked if the neurologist had explained that and I told her no, not really. We both laughed and she said that in her experience with neurologists she has found that sine they are so intelligent they tend to not be able to relate info very well to those of us who are not so "intelligent"! She went on to say she has treated patients with CP as serious as comatose state to being so mild that you aren't able to tell AT ALL that something is wrong. She automatically knew James' was a very mild case. Music to a mother's ears! She also explained how CP affects someone. The part of his brain that is damaged cannot send the message to the muscles that are affected by that part of the brain that they need to work. So, we have to train another part of his brain to get the message out and therapy is the way to do that.
The evaluator from our state program, Babies Can't Wait, came to the house today as well. Since he has the diagnosis of CP he is automatically eligible for the program. I fell in l-o-v-e with her too!! Once again I had to answer a million questions and sign tons of papers. She came when they were eating lunch and was just blown away at how well he eats and the fact that he uses a spoon so well. Once he got down, she pulled out her box of toys and started testing his abilities. She was pleased with all the skills he has and told me some more things to start teaching him. She also said he doesn't have any developmental delays. So I asked what she thought about his development in the future, she said that with therapy and me teaching him new things and with Audrey motivating him with all the things she can do, she really believes that he will thrive beyond belief! Again, music to a mother's ears!!! Oh, and his language skills are right on target so he wont need any speech therapy right now! Once they get all his medical records and evals, the BCW team will come up with a "plan" for James as to what route they are going to take with him and we will go from there. She told me that this program is designed for me to get whatever I want for our son. What a blessing!!
Our week started out pretty gloomy but has ended on a high note! We've still got a long and winding road ahead of us. Insurance is not easy to deal with by no means. Continuous doctor appointments and therapy sessions are going to get old. The stretches are uncomfortable for James to endure. He is not going to like having a brace on his leg or to have to get shots on a regular basis. But today was a GOOD day and we must give all the praise and glory to our heavenly Father. His grace is sufficient!!

8 comments:

Becky said...

What FABULOUS news! I could hardly wait to read each sentence. I'm so thankful for your great day and will continue to pray for more just like this one.

Dianne said...

I love your zeal and excitement... and I am so thankful James' case is considered mild and maybe, someday, you can tell him he had cp and he won't have a clue what you're talking about.

You are one more super devoted Mom and a wonderful testimony...each time I read here... of our Lord's mercies and compassion on His people.

He is so good.And, you are so precious.

Dana said...

Music to a friend's ears too! So thankful that everything has finally started for you, and that he seems to have such a mild case! PTL. I hate you had the ER experience, but am thankful it was nothing too terribly serious. Keep up the good work mommy, you are doing an incredible job!

Dana said...

by the way, where do you think my kids get there fat legs?!?!?!?!

Anonymous said...

I so agree with Dana...keep up the great work mom! AND with the PTL!!! Formost and above everything else! nb

Kathy U said...

So glad to hear things are going as well as they are. We are praying for your precious family.
Sis Kathy

Laura said...

Amanda, I'm so glad things are going well...apart from your trip to the ER and all! Yikes!...The mildness of his condition is such great news! We'll continue to pray!

~sydney~ said...

So glad to hear such wonderful news! Thank you for keeping us updated! Love! And hope to see you this weekend!