Thursday, April 2, 2009

A Busy but AWESOME day!

So for all the bad days that Zach has been having, I think that he is finally starting to rebound and feel better. I am not sure if it is just that he is healing and getting healthier or if the cont. feeds had something to do with it but I think whatever it is needs to stay!

Zach with his bookbag and pump_____ Zach with his splash!

1st, Zach is back on cont. feeds, what this means is that he has to be hooked up to the feeding pump 24 hours a day. I can unhook him to take baths or if there is something that needs to be done but on average he is hooked up all the time. He loves his backpack so I really don’t have an issue with this; one of the hardest things to do is to make sure that there is formula in the bag, although we are coming up with a system. While hooked up he can still eat, drink, play, laugh and sleep… so to him it is no different. Plus the weight of the book bag with the pump and feeds really helps stabilize him and he is able to walk much better. He is not really eating or drinking any more with the feeds but he isn’t eating any less either, he loves his splash so that is a blessing. Splash is a Specialized formula, it is kinda like a juice and has all the nutrients in it just like other formulas; it comes in juice boxes and has 3 flavors. We can’t get it covered by insurance right now so it is a treat that he gets every now and then. We get samples from the GI office and although we might be able to get it covered by insurance we know that they will only cover the Elecare or the Splash and if we try for the splash and don’t get it that we might lose them covering the Elecare as well so for now we aren't trying to get the splash covered.

Peg and "w-sitting"____________Trying to get him not to W-sit
Zach getting his leg "brushed"

2nd, Zach has had a number of therapy changes. We are doing speech therapy twice a month now, this is an increase. He is starting to be able to follow commands and is learning how to communicate with us a little better. He still screams a lot but he has developed the ability to shake his head for “yes” and for “no” so this is helping us out a whole lot. He has a modified sign for “more” and for “all done” which again helps us more than I can ever tell anyone. Occupational therapy seems to be helping a lot we are working on sensory issues, not w-sitting, and building up some strength. Several of the things that we are doing while there is brushing therapy, playing in rice, using a peg board, and coloring while not in the w-position. The hardest thing by far is the w-sitting, or not doing that, it is how Zach feels the most stable and the most in control so he fights us hard when we try to keep him from doing that. The therapist is going to be working on building his trunk muscles which will help his low tone and in return will help him be able to sit more comfortable without being in the w position.

Zach and his new A-AFOs walking outside

Zach's new A-AFOs _______________Zach's old AFOs

3rd, Zach got new braces and they are so neat. Zach got his 1st set of AFOs back in June, he was 11 months old and we were told that they wouldn’t last very long because he would out grow them pretty quickly and that they would have to be replaced. Well, after 9 months we had to get another pair because Zach has gotten taller and the old ones were no longer tall enough for him, he still fit in them fine but they wanted the support to go up higher in the leg. So the neurologist ordered, wrote a prescription, for A-AFOs, which means that they aren’t solid. These new braces will have an ankle built into them. We went and got him casted for them and then we were able to go and pick them up this week. It was so funny they warned us that he wouldn’t be able to walk in them immediately and that we needed to build up to them again. Well, I put Zach on the floor and off he went, he loves them and they are wonderful.

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