Usually don't post...

I usually don't post much regarding the legal/governmental hoops we have to jump through on a regular basis because we have a Special Needs Child. It really is exhausting and time consuming. Recently, it has become a nightmare!!!

We are still awaiting payment for Ben's leg injury. I honestly do not understand why it has become such a mess. His therapist was more than cooperative, wanting her insurance to pay his medical bills and we thought it was a simply matter. Boy was I wrong and boy has it turned into a mess. I'm calling attorneys and spending hours talking to them. Everyone is confused and not one attorney understands all aspects in play. What makes it complicated is that Ben has Medicaid and can't have more than $2000 in his name or he will lose benefits. If he even loses Medicaid for one week, he has to go back on the Ohio Home Care Waiting List... which many of you may remember took us years to get. They money to pay the hospital bills for his leg injury can't be paid directly to the hospital or our private insurance (which would make the most sense)... they have to be paid to Ben for us to then pay. And a trust would be set up in Ben's name by the court to do so (with me serving as his legal guardian and a guardianship would need to be set up).

If this trust is set up; even though the money would be paid towards bills, Ben would lose his waiver spot. To avoid this, we could set up a special needs trust to put the money in, but this would cost us thousands of dollars... which we don't have and would be a totally waste to pay for a temporary account to use to pay the bills. Any attorneys who specialize in Disability Law we have talked to, doesn't know anything about personal injury settlements and vise versa. Nobody is able to help. I'm really at a loss. And should we have to pay for an attorney even though we have settled and all we want is our bills paid related to this injury??

On another note, I received a form from Ben's doctor that we requested. On the form is a spot for diagnosis. In addition to CHARGE Syndrome, they had Cerebral Palsy listed. WHAT??!! This is news to me! Although we know Ben had a stroke at birth and had some muscle tone issues related to that, I've never know they considered him as having CP. After talking to the doctor and him explaining that basically what he had happen at birth and the muscle tightness he has is under the umbrella of CP, it still really hit me hard. I don't know why, but it did. I guess CP was an additional label/disability I wasn't prepared to add to Ben's list of challenges. It doesn't change anything now, I just makes me worry more about his future ability to walk. I have hopes of him walking one day, but now I worry I'm not being realistic. First the leg break to set him back so much that he still won't bear much weight on it, then finding out his hips aren't in the socket completely (which I'm still not sure isn't related to his leg break) and then finding out this new diagnosis. It's just so much for Ben to overcome.

On a good note, the cyst they found on Ben's spleen has diminished in size.