Physical Therapy

Today we met with Kelly, the PT. She was great. Z was cranky as he had been up since 4:45am and this was 10:15. Yikes! I know he liked her, he was just tired. Kelly taught me so much in such a short amount of time...I was very impressed!

I learned that the way Z (and Jonathan) sit is called a W position and it isn't an ideal position. They are kind of on their knees but sitting on their butt so like feet behind them. We always comment on how we could never sit like that. Well it is really hard on the hips so we have to make sure Z learns to not sit like that...and Jonathan.

She gave us some exercises and tips on how to help him strengthen those muscles. He was all attitude and frustration. I went to carry him off for his nap and as we passed through the kitchen he said "Mama" and pointed to the refrigerator. So I had to feed him a bit before nap. Lately Mama has been his word when he doesn't know how to say something. He will also say "Neenee" which means drink but he will use it for other stuff. He just wants so badly to communicate with us. He can answer yes or no and does sign language for "more". I am now a true believer in teaching babies to sign. I think this would help us communicate. I am going to work on it a bit more with Z. The pointing and guessing is just not fun.

His molars have broken the skin and he is a happier boy. He still has his habit of waking up at 10 or 11pm and crying until he is in bed w/us. Well I am going to try and let him cry it out (CIO) because I need sleep. Tuesday night it last 2 hours and then he woke up again at 1:30 am. Last night I had no energy. Bad I know but really, I need sleep.

I must say, it was an uneventful week and I am so thankful for that.

Physical therapy evaluation

The lady from First Steps, Kate, came tonight to do a physical therapy evaluation on Z. She did lots of tests and it made me aware of how delayed he is in gross motor skills. Fine motor might be a bit behind as well.

After her assesment she said he definetely has low muscle tone (that is an NS symptom/characteristic/side effect) and she said he was really working hard to use his upper body muscles. She also said she thinks he has some sensory issues. Since this was just the initial evaluation, I have to wait for her to contact our "case worker" and then we will work out a plan for him. I didn't ask but I assumed this meant that he qualified for PT under the MO First steps Program. I think they will then determine what the insurance will cover and what our costs will be. We should hear from her in a few days.

I am just always amazed by the different things these "experts" show me. She gave us lots of exercises to do. She showed me how Z won't even twist at the waist to reach for something on his side, he just uses his arms.

Even though I expected this and deep down (not even that deep down) I knew Z was really delayed, it still left me a little sad to hear an expert say he did have low muscle tone and was delayed. I don't understand why it upset me and broke my heart for him, yet again. If this is the worst thing he has to deal with, the worst complication of his NS, he is not that bad off. I just look at my teeny tiny little boy and don't want him to go through any more than he already has. It isn't fair. Z doesn't know he is delayed, he is happy and silly, just like a baby should be. If it doesn't bother him then why should it bother me?

It's okay because I am going to get him all the help he needs to be the best he can be...he deserves that and so much more.