Heading to Genetics tomorrow...

Tomorrow we go to see Dr. Niazov in new Orleans. He's the Geneticist that we hope will tell us that Bodie does not have Muscular Dystrophy. I know he can't tell us this tomorrow, but I like to hope.

He'll first have to do a muscle biopsy on Bodie's leg muscle & then test the tissue to know for sure.

So, I really don't know what to expect of our visit tomorrow except one thing... That my Insurance won't be paying for the visit, and to add yet another bill to the unpaid stack. Did I forget to mention "thanks" to Select Administrative Services"? Oops, must have slipped my mind.

RH

UPDATE- The appt went much better than expected! Based on his progress the Geneticist has ruled out any severe muscular myopothy. He still wants to do the biopsy, but Bodie either won't have any problems or it will be a mild case. Chances are good that he will be able to live a pretty normal life. Music to our ears!!! There was also alot of jabber about increased feedings and growth hormones. Poor kid has either been starved or forced full of food since the day he was born!

More good news, He also wants to get Bodie in to see the Cranio Facial people and Plastic Surgeon next month. It seemed like he wanted to do the surgery sooner rather than later, which is fine by us, I can't wait to get that detestable trach out!!! He also talked about the jaw lengthening procedure, which may have to be done at the same time so the tongue can fit in his mouth and come out of his airway.

The only problem we have now is having to depend soley on Medicaid since the insurance dropped him for maxing out his lifetime benefits. Mississippi has a Medicaid program called MississippiCan, which should be called WeScrewYou! Apparently, there are Many Many things that are not in the list of providers! Like our Home Health Care, who is also not intersted in helping anyone. We can't switch Home Health Care providers though because they are the only ones who have pediatric trach supplies. Soooo.....Grace Healthcare is not covered by MississippiCan nor do we want to deal with them anymore because of the unprofessionalism (not showing up, not calling) but we are still stuck with them. All we can do is try to opt out of MississippiCan in the 2 days we have left to opt out or we are stuck with them for the next year! They may not let us opt out, and we don't even know what exactly is going to happen if they do. We're banking on him going back on regular Medicaid, but we'll see! Does your head hurt yet......mine does!

Brandi