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.

Update

Just thought I would give everyone who reads this a small update of Reka and myself. Reka was sick all month of January, numerous amount of doctor and ER visits, but her lungs were always clear and no infection. My opinion, allergies, sinuses, who knows. Next week we are going to Houston 1.) to see the family and 2.) Pulmonologist appointment. Unfortunately, the one here in Corpus decided to leave in October, (but stayed an extra month) and went to Maryland. Now the closes one was Houston, but with the help of my friend because of my lack of internet skills she found a list of numbers to Pulmonologist in San Antonio. Thank god called the list and found only one that knows and takes children with SMA. YYYYYYEEEEEEEAAAAAA!!!!! It's only a two hour drive compared to four. Now the Pulmonolgist department here is suppose to get a new doctor in April, but the question is does he know anything about SMA? If not looks like I'll be applying for assisted living in San Antonio, but luckily I do have a friend that lives about 45 minutes away, my family would only be 2 hours away, and my in laws would only be two and a half to three hours instead of four. Which in my opinion would be great, I love San Antonio, its close enough I could visit more often then when I lived in Houston. So I'll be waiting for that call from the doctor to tell me, I'm hopeful he will but such as life. I'm sure your asking why would I move to another city just for a doctor, because this is THE doctor for children with this disease. Read about it if you want more information. As for me don't do much other then take care of my daughter, would love to work but cant find a job that will let me have winters and summers off, and sick live for my daughters care. On another note Reka's dad is coming back to America, no luck in the job district. At least he will be able to see her more often. Sorry no pictures, but I am going to try and get my section 2 of my 3 part on daily life with Reka. Hope all is well with everyone and God Bless!