Tuesday, March 24, 2009

Contacts!

You have had your contacts for a week now, and it's like you have discovered a whole new world! As soon as we left the doctors office, I could see a difference in the way your responded to things. Over the past several months you have gotten pretty good about keeping your eyes still in your head, but there has always been a glazed look that says you aren't focusing on anything. As I strolled you out of the office, I watched you looking at a red clamp on the side of your stroller--and you were really seeing it. In this past week your facial expressions have become more animated, and you are starting to think things are funny on your own. In the past you would smile, but only when prompted. A couple days ago you actually laughed again for the second time. Daddy and I aren't sure what was so funny but something definitely tickled you.

And today, you thought you were so cute (you are), and were playing a cat and mouse game with me. Right now you aren't too big on eye contact; I think it wears you out. So you will only look at me for a couple seconds and then would look away. So I was laying next to you and when you looked away from me up at the ceiling, I would say, "Pssst!" You would cut your eyes in my direction, but not turn to look at me, and get a mischievous little grin on your face. You knew exactly what I wanted you to do, and just were not going to do it! Stinker baby!

It isn't as hard as I thought it would be to put in and take out your contacts. Last week we went to pick them up, and Daddy met us there. Before we could leave with them, Daddy and I had to demonstrate we could put the contacts in and take them out on our own. So I went first, and put in your right contact on the first attempt (even though you did your best to make it difficult). Then I tried for the left eye...and tried and tried and tried. Just couldn't do it. You were throwing a fit, which I don't really blame you for, and I finally handed it off to Daddy to try. First time, he got it in! I thought, "Well, that's just beginners luck for the both of us." Next we had to take one out. Since I had already traumatized the left, we went for the right. Daddy took it out, no problem, and I popped it back in, no problem! So now we have a system. Daddy does the left eye and I do the right.

These contacts you are wearing are not the right prescription. You need +25 and they are only +20. Our goal is for everything within an arms reach of you to be clear, since that is where most of your world takes place. Next Thursday, when the right prescription comes in, you should have the same vision as any other baby your age. Until then, these are better than nothing.

Still, I can't wait to see how much more of a difference the next set of contacts makes to your level of alertness and interaction. I am anxious for you to start reaching for things, recognizing my face, learning. You really are such a smart baby, and I know that once your eyes are finally corrected, you are going to improve leaps and bounds.

Daddy and I love you.

Friday, March 13, 2009

Rolling Stone

video

You have been rolling toward the right for over a month now! You are getting better and better. At first you could only roll from your side to your tummy. But last week you rolled from your left side to your back, to your right side to your tummy. It took awhile but you did it...that is 75% of an entire roll! You haven't quite figured out the technique to roll towards the left. And it is going to take some upper arm strength for you to make that last step from your tummy to your side. But you try a little harder everyday.

Your legs, on the other hand, have no problem moving. You look like you are running in place most of the time! Especially at night. You and I, we aren't so into early mornings. We like to sleep in late and stay up even later. So most of the time we take the mornings slow and then rev up for the evenings! Daddy is the oddball in the family who likes to be in bed early and rise with the sun. We try to be respectful of that...but SOMEBODY I know isn't always so easy to rationalize with and doesn't feel tired at night. (It's you.)

Friday, March 6, 2009

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.