Long Over Due

This year has been a pretty good one, we moved in with mom back in June 2009. Reka hasn’t had any hospital stays this past year which I think has a lot to do with her breathing equipment. (Posted on my last blog) She is still on her feeding pump which I'll upload on my blog of what it looks like and how it works. She still see's a Neurologist, Orthotics, and Pulmonologist every 6 months. Her Nuero and Ortho are in Corpus, but her Pulmo is up in Houston and that gives her a chance to see her dad. She also has Physical, Occupational, and Swallow therapy which we also do in Corpus (except occupational it’s the only one they have in this little town). In PT she is starting to practice using a mechanical chair, in ST they do different massages with her lips, cheeks, and have her stick out her tongue and move it around. I also got a letter from Medicaid saying they have finally approved her stander which will be another article I'll post in my blog once we get it home and put her in it. And thank goodness they approved it I'm getting tired of having to bring the bad, mean, angry, cussing side of me to get these things approved. Never knew I had that much anger in me, but when it comes to your kids you do what you got to do! Almost forgot to mention she does go to MDA every 6 months. So far they haven’t really done anything for her but she has most of the things they provide; she already has therapy, doctors, etc. But the big thing is the MDA camp she can start going to when she turns 6. This is $800 for a week but so worth it for these kids. They use to be able to help out with families that couldn’t afford it but because they have been losing funding, not so much now. They also use to help families with $2000 for any piece of equipment insurance couldn’t pay or was taking too long to approve but lost that as well. Reka is in her first year of school. Pre-K, she is in a special class where her and another little girl like her are the only girls in the class, the rest are boys. I think there are 8-10 kids in the class. Were still trying to figure out how long to keep her in school so she doesn’t get worn out too much. Right now she goes about 4 hours. I take her in around 9:30 right before I go to work, and pick her up around 2 when I get out if I’m not closing lunch if so then Lisa picks her up. I also started working part part time at Panda Chinese Restaurant. It gives me a chance to get out and socialize again, something I missed so much! So far in school she hasn’t gotten sick which I was actually worried about. I might have had to keep her out about 5 separate days since she started. She actually has the same teacher Gavin had before they started the class for Autistic children at another school. And the teacher’s aid is Ms. Berry but Reka calls her Blueberry, I thought that was so cute. Other than that she has been doing great her health is great the doctors praise me on how good she looks which help me feel like I'm doing something right with this awful disease. Sometimes I feel so lost, but thanks to MySpace and Face book I have been able to meet other parents to help me along the way.