Costly Mistakes

Good news...we got your Medicaid last week! As of now, they are only willing to back pay until Feb 1 of 2009. All 8 of your surgeries, 10 weeks of hospital stay and every diagnostic test imaginable (sometimes twice) was done in 2008. So we are going to contest it on the basis of our caseworker not filing your application when she said she did. But the important thing is was I was able to move forward with scheduling surgeries for you!

It has been discouraging how slowly things have been going lately. Your glaucoma EUA is March 27--that isn't a big priority because everyone is pretty sure your glaucoma is stable and they won't need to operate.

I asked the optometrist to order your contacts again last week, but it still hasn't been done. They say they are waiting for approval from Medicaid, but I don't think they are being very diligent about hurrying the process along.

And the next date available for your ptosis surgery (which is what we are most anxious for) is April 24. I scheduled it Feb 25. Two whole months away. You will almost be 11 months old by that time. And that's assuming this one actually happens. I have no guarantee it will.

I feel like I have let you down when it comes to your vision. It hurts my heart that at 11 months old you still won't be able to hold your head up--which means you also won't be able to sit or balance. And it also makes it extremely tough to teach you how to swallow with your head always back. I don't even know how this has taken so long. We have been strung along a few weeks at a time, and it has added up to 9 months. I know it is partly my fault. There have been weeks, especially over the holidays, that I didn't check up on how things were going. I should have called every pediatric ptosis surgeon in Houston until I found one willing to do the surgery ASAP. After our first few surgeries were cancelled, I should have known better than to trust anyone, and gone with my instinct of ordering your contacts months ago. And when your contacts weren't ordered the first time like I was told they would be, I should have made such a fuss that they would order them rush delivery. I am the only voice you have, and I haven't been loud enough. I am so sorry.

But since I didn't do any of that, all I can do now is learn from my mistakes. I feel like maybe I should still try to find another surgeon, but I really have a lot of confidence in Urso, and want him to do the surgery. I am asking to schedule a back up surgery the week after April 24, just so that we don't have to wait another 2 months if it is cancelled again. And I am calling daily until your contacts have been ordered. By your first birthday, you should be able to see like any other baby. And in the meantime I am going to trust that God is going to do good things for you, despite my inadequacies.