Thursday, August 18, 2011

Time keeps on ticking...

Wow. Three weeks from today at this time Desmond should be done with his surgery. It's amazing how this has seemed to stretch out forever yet zoomed by at such a speed I feel like I'm out of control sometimes. And all of the bumps in the road have just made the ride that much more rough. I reassure myself by remembering that Desmond doesn't know any of it is going on. He is as happy as could be and is growing and developing wonderfully.

He is still pretty shaky on his legs and prefers to crawl most places. He has become quite the little chatter box. He still has the same four word vocabulary of dog, diaper, uh-oh and mamma, but he chatters nonsense all the time and it's really cute. We went by the hospital the other day to see his new best friend Leo and his proud parents, Sophie and Alex, and Desmond chattered away the whole time we were there. He pointed at Leo and talked to him.

Sophie and Leo on his second day out in the big world.
Desmond is doing really well in the 1-year-old room at daycare. He eats most of the same meals as they do, unless it's something like corn dogs or chicken fingers and then Mamma sends his lunch. He sleeps on a mat for nap time every day. He even has homework!! Don't worry, no algebra yet, just coloring mostly. Stay tuned, next he'll be enrolling in college.

UPDATE: I forgot to mention when I originally posted this that I checked in the MSCHIP database of providers and both Dr. St. Hilaire and Dr. McBride are providers!! Now we just have to make sure that we get prior authorization for the surgery, which Mary Ellen is already on top of at CHNOLA. Having competent people on my side at the hospital has made me feel sooooo much  better about all of this.

Wednesday, August 10, 2011

On the Move

video
Desmond is taking big strides in becoming a big kid. Not only does he sit at the table to eat at daycare and join in activities like singing and arts and crafts, but now he is truly mobile! Last Sunday we stopped by Sophie and Alex's house to drop off some food for their freezer in preparation of the arrival of their baby. Alex's mother, Lupe, was there and asked if Desmond was walking yet. I told her not yet, but soon. Not even one minute later Alex stood Desmond up and he walked a good three or four feet to Sophie. I had no idea it would be that soon! We all screamed and clapped and made him do it over and over again. He liked the attention for sure.

In other not so good news, I got a letter today from MS Medicaid. We had our reevaluation last month to see if he was still eligible and unfortunately he is not. I guess the child support I started receiving last February pushed us over the limit. He is, however, eligible for MS CHIP insurance. I called the New Orleans Children's Hospital to make sure we were still covered and Mary Ellen said she would run it by the business office and see. I also talked to someone at CHIP and she said if they aren't they just have to call and obtain prior authorization before the surgery. It doesn't sound like it should be that complicated, but it still scares me.

When I woke up this morning there was a reminder on my phone that we were supposed to be checking into UMC in ten minutes. I guess I forgot to delete the original surgery date from the calendar on my phone. It's been on the back of my mind all day nagging me. Then I go home to find this letter in the mail. I'm trying not to worry too much, but i don't know what we'll do if CHIP won't cover the surgery. I just have to tell myself that something will come through.

Thursday, August 4, 2011

Surgery Date!!!

I snagged this shot of Desi while I was taking L & O's pregnant portraits.
We finally have another surgery date! Desi will check in to the New Orleans Children's Hospital at 10 a.m. on Sept. 8 and his surgery will be at noon. As I said before, the type of surgery they will be doing should only take about an hour and a half versus the six and a half hour one they proposed at UMC. Desmond may not even have to go to the ICU and will only be in the hospital for three or four days if everything goes well.

I'm so excited to have things moving again. Last week we got our care package from Cranio Care Bares, a non-profit organization that sends out care packages for Cranio families for their time in the hospital. It was really wonderful and full of all kinds of goodies that I would not have thought to bring myself. It was still kind of a sad reminder though that his pre-op appointment should have been this week and his surgery next week. But, I'm trying to move past my disappointment in UMC and just be grateful for the craniofacial team at CHNOLA.

Did I mention they're not going to shave off his beautiful curls?
And as always, I could not have made it this far with all of this without the support from my family and friends and the wonderful people from the cranio networks I have found online. We love you!