The Long Awaited Update!!!!!

Ok, so I'm a terrible blogger. I haven't updated since right after Desi's surgery and I apologize. For all of my close friends and family we have been in touch since then so you have heard about his progress. But for those of you I don't know or don't talk to often, I have left you with a cliff hanger wondering how the little fella is doing.

Well, I think we can safely say that Desi is a pro at healing!! We only spent three nights in the hospital. The surgery was on a Thursday at noon and we checked out on Sunday at noon. A week later we were back at Children's Hospital and Dr. McBride was showing Desi off to all the nurses.  She said he was looking good and that she wished all of her patients could heal as well as he is.  She said he will still have soft spots, but they will be more on par with what his head is supposed to have at this age.  It's so amazing what the human body can go through and how quickly it can heal.

Desmond only about a week after his surgery!!  He rocked that black eye for months and months, but it is finally gone.

After Desi's surgery I had decided that we needed a life change. For a long time I was afraid that my being a single mother would put me out of a job at The Vicksburg Post. Before the surgery, one of our three photographers left for a better job and they decided not to replace him. That meant that I would have to go back to being on call (which, as a single parent, doesn't work) and work every other weekend. So, I decided that it was time to leave newspaper work and take a risk at another career.

I had been toying with the idea of moving to Los Angeles to live with my sister, Toi, for a a while. She had offered us a place to live after my attempt at getting a City job in Vicksburg flopped and I was ready to take it. The only problem was that when that job hadn't quite flopped yet, and it looked like I would not be moving to LA, Toi and her partner, Joel, had decided that it was time to move South. They were set on New Orleans. After Desi's surgery, Toi and I were at large in the Big Easy and she started talking about moving closer to home and put it out there that if I was interested the offer still stood whether they lived in LA or NOLA. So, it was decided. Desi and I would move to New Orleans with Toi and Joel and a start fresh.

So, here we are in NOLA.  We moved here in February and share a nice double (what New Orleanians call a duplex) Uptown.  Desmond, Carmela and I have settled in nicely with Toi, Joel, their cats Mina and Simba, and their dog Sadie.  It's a pretty good life these days.  I teach Spanish part-time at a small technical college and Desi has a new daycare that we love.  Toi and Joel are loving being back in the South and the rest of the family is glad that we are all closer to home now.

Dizzy Desi is going to be the next big brass band leader! 

Desmond gets to know his new roommates Mina & Simba.

We went in to CHNOLA in May for Desi's 9-month post-op checkup and they said he is looking fantastic.  He still has quite a large gap in the top of his skull where they took out the fused suture, but Dr. St. Hilaire assured me that it is a good thing.  He said with all the brain growth Desmond will have over the next year, he needs as much space as he can get to allow for it.  He also said the longer the suture takes to fuse, the more his skull can reshape to a "normal" shape.  Dr. St. Hilaire was so pleased with him that he said Desi doesn't have to come back for another checkup for a year!!!

I know our cranio adventure may not be over yet, but at least we're on the flip side these days and I am grateful.

Desmond turned the big 2.0 this month too!! He's growing so much and talking like crazy.  He sings songs and makes pretend.  He knows all the other children's names at his daycare now and asks to call his family on the phone.  Every day brings a new adventure with him.

Happy Birthday, Desi!! And Happy Birth Day, Mommy!!

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.

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!

NOLA

Last weekend Desmond and I headed south to New Orleans. It was his first time in the Big Easy. We got to hang out with my aunt, Nancy, and her grandkids, Loraine and Gio. They took Desi to his first Mardi Gras parade.





They said he had a blast and was a true parade goer.

On Sunday we went and finally met Spencer!! The boys are only three weeks apart but we mothers had failed to get them together before. Spencer is huge!! Three weeks younger than Desi and eight pounds heavier.





It was really good to spend some time with family and friends I don't often get to see.

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