Tuesday, July 27, 2010

Is this how life is now?

Well today was quite hectic for me. We started the day with swim class. You know I actually thought a 10am swim would be warm enough after all it is the END of July. But it isn't even starting to warm by the end of Bella's class which get's out at 11am. Thankfully Janine helped me out today and brought Bella home from swim as Jasz had his first Occupational Therapy appointment today. The therapists name is Sherri
I'm not exactly sure what I expected the appointment to be like but I am sure it wasn't what I thought it would be. I expected her to do stretches and exercises with him, but she didn't at least not today. She asked a ton of questions about my concerns, and watched the way Jasz moves. She was also heavily focused on his skin. She seems to firmly believe his rough itchy skin which he has had since birth is a food or environmental allergy. She wants me to do a wheat elimination diet, but then backed off once Sherri realized that I would have to be on the same diet, as he is still nursing. So, she suggested I have a Dr. order a Celiac disease panel. She also suggested he be seen by a Pediatric Orthopedist. She noticed as did others working with him that he splays his joints. Sherri really wants his hips and legs X-rayed to get a better idea of what is going on in there.
I had mentioned he seems to be stronger on his left side than his right and she said that she didn't see it in what she saw him do. But he didn't do what I was talking about while Sherri was here. Sherri said that if it is the case he may have cerebral palsy. So I should mention it to Dr. carter.
Because of Jasz' incorrectly standing and incorrect position while crawling we now have to backtrack. We have to constantly position his legs while he is standing and we have to get him to be up on his knees and position him so his hips aren't splayed out and he is strengthening the correct muscles.
I mentioned my wanting him to have stronger jaw muscles so he is not so limited on what he will eat and the cups he can use. So she gave me some interesting ideas. One is to tap the muscles around his mouth right before he eats. She suggested making it a game and involving the girls. Another is to go by a vibrating toothbrush for him. She thinks we should start by using it on the outside of his mouth and eventually trying to use it on the inside. I guess the vibrations should help build those muscles. she also wants the girls to play a tongue sticking out game with him. It won't be hard for them!!
She talked about how loose his joints are a lot and suggested that we sew his pj pants together to the know wo he can't splay his hips while sleeping. I think we'll try it though I am skeptical as he won't be comfortable and may not sleep well and then I won't either. But I guess I know my project tonight.
She kept going back to allergies and his skin. Sherri told me the reason she really wants this investigated is that many food allergies are overlooked and repeated exposure to an allergen can cause organ damage over time.
So my home work from Sherri: Ask Dr. Carter a list of questions, sew Pj pants, buy a vibrating toothbrush and buy a playground sized ball for his therapy. She ended up staying an hour and a half. But, she clearly wants to help him in all areas of his life.
I left the kids with Janine again and took Jade to play with a puppy. I will talk more about that in another post. Just know Jade plays nicely with others and expect an announcement soon. I rushed home and got dinner in the oven and finished just in time for Trina to come over. Trina is his child Development specialist. I guess Sherri had filled her in on that appointment.
So we have a new focus. The focus is now is not so much in getting him moving. It's baby steps, we have to build those muscles correctly. Trina and I spent a long time working with his stand. His natural stand is hips splayed, feet in plie position. So she had to reposition his legs to have knees and feet pointing forward. something we noticed in doing that is even when you get his legs in the correct position there is an odd bend in the ankle. Like it curves the wrong way. Again we don't know what it's about but it is worth looking into. It's hard to balance as we want him to crawl because having to use his arms will strengthen them, but we can't let him crawl in an incorrect position. He also gets tired real fast so it will take time.
Now this mommy is tired and a little overwhelmed at how large this task before me seems. I must remind myself that the small accomplishments are even more important than the big one's as they lay the foundation. I also have been told numerous times by Trina that she has never before seen a 17 month old with such great imagination play. She said today that maybe by themselves but not with others. It is very unusual for a child his age to involve others in his play and he really wants others to be involved. he skipped right over the parallel play step. So his intellect, charm and ingenuity will get him far in this process and has already made it easier for Trina. I alsomust remember that I have a support network and when I am feeling overwhelmed they may be called upon.
I think that's all for now, but I will try to write often!!


  1. Rebecca thanks for sharing. I have been out of the loop and had no idea what you have been going through. Definitely go through the celiac panel, or get gluten free yourself. it can be a bit of a challenge, but there is alot of good food out there for those in need of the gluten/wheat free. it will be healthier in the long run for both of you. I would love to be part of your support network, call on me when you need to. Yvette Wilson

  2. Goodness! :O The things we go through for our children, huh? You are SUCH a great mom, Becky, and I know no matter what the diagnosis are you will handle it like a champ. I'm here for you when you need an ear or a shoulder. HUGS!