Thursday, July 8, 2010


Your special chair is awesome, and we are so grateful it allows you to be upright and supported. One drawback however, is that there is no place to put your feeding pump. So the challenge is maneuvering your chair and your IV pole at the same time. Both have wheels, but both get a little squirrely and want to go their own ways, especially on the carpet. So I asked The Wheelchair Shop (who ordered the chair and does the modifications) if there was an attachment. They looked into it and told me there was, but it wouldn’t be fully funded by Medicaid. The WC Shop would have to order the pole at a cost of $400 (which is absolutely outrageous to me) and Medicaid would only cover $100 (much more reasonable). But that would leave the Wheelchair Shop with a $300 loss on their end. So I resigned myself to either paying for it out of pocket or making it work as is. I chose to make it work for now.

Well today, Matt from The WC Shop came over with a pole and attached it to your chair! I am still not sure how they got it funded, but apparently they kept at it and were successful. I am so appreciative that they didn’t easily give up. Unfortunately, it isn’t often I find a company or organization that goes that extra mile for kids like you. Logic would lead one to think that people who work with special needs kids would have a heart for them, and a desire to help them as much as possible as quickly as possible. It just isn’t so. Much more often the people we deal with are cranky, slow and incompetent. This experience was so refreshing. It isn’t a huge deal for us to have this pole. We could have survived without it. But it simplifies our life just a bit, and I am so thrilled to be blessed with it!

Along the same lines, I received a letter today from the DADS office stating we have been given a new caseworker for the MDCP program. I cannot express how relieved I am by this news. Our former caseworker was just plain ugly. She was the one I caught in a number of lies so that she wouldn’t have to help us. She was the one who held onto our application for an extra 60 days which caused us to pay for 2 major surgeries out of pocket. She was the one who I would call and call and call again over the course of several weeks, and when she finally returned my messages her standard line was, “Look, your kid isn’t the only kid in Houston with problems” with as much attitude as she could muster. She was the one who made me so angry over the phone once, that I was literally shaking and when I hung up to call Daddy, I burst into tears. She was the one I eventually refused to speak with and so Daddy had to do all the dirty work. My understanding was that she was hired to be our advocate. She was much more an adversary. I asked on multiple occasions to be assigned a new case manager, but was told the assignments were by zip code and nothing could be done. This was one benefit in moving for us! It is still on my “to-do” list to write a letter to her supervisor, outlining the issues we have had with her. I never got around to it which is a shame; I am sure she treated all her other cases the same way she did us. And my guess would be those other families have about the same amount of time to dedicate to those tasks as I do. I just have to pick priorities. If the choice is between spending time with you, Daddy, Liam, updating your blog, getting bills paid, making dinner, scheduling doctor appointments and filling scrips or sitting down to write a complaint letter, I have to choose the former.

I am so excited to find out we have someone new. I am praying that she is more pleasant and knowledgeable, and that this attitude isn’t the corporate culture there. I have spoken with two other ladies in the same office—one was very kind and helpful. The other was more like our case manager. But whoever it is, she must be an improvement.

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