Wednesday, November 14, 2012

From the mouths of babes

This morning I told Desi to go sit at the table when his oatmeal was ready. As he made his way to the table he's talking to himself saying, "Go sit on the hosey (his rocking horse)? No! Go sit on the couch? No! Go sit in the chair? Yeaaaaahhhhh!"
Such a sweetie:)

Location:New Orleans, LA

Thursday, September 27, 2012

One Year Cranioversary

September is Craniofacial Acceptance Month.  It also happens to be the one year anniversary (Sept. 8)  for my favorite little fella, Desmond's, surgery to correct sagittal craniosynostosis. He had a checkup with the craniofacial team at Children's Hospital New Orleans in May and he passed with flying colors! No more checkups for a whole year.

Just look at that beautiful round head!  This was after his first official haircut.

I'm writing this blog post today for two reasons. The first is to say THANK YOU to all of you for your love and support during that crazy, worrisome, stressful and scary time.

Next, I would like for you all to help me thank three organizations that gave us support in that time of need by throwing some love back their way.

The first is Children's Craniofacial Association. They are a non-profit group out of Texas that provides everything from basic information and support groups to financial assistance. They awarded us a grant that made it a lot easier for us to travel out of state for Desmond's surgery.

The second organization is Cranio Care Bears. CCB is a non-profit run by two awesome cranio moms who send out support to families facing craniosynostosis surgery in the form of a care package for the hospital. Our package was full of thoughtful items that only a parent who has camped out in a hospital for several days would think of.

The third is Cranio Angels Network. This is an organization run by a cranio mom who makes adorable headbands for girls and pirate do rags for boys to help keep their incisions covered while they heal. Desmond rocked his pirate rag a few times after surgery and it was awesome! They also offer financial assistance.

So, back to the second reason for writing this post. What I am asking is for your support again. But this time, on the anniversary of Desmond's surgery, I ask that you send support to these organizations.

CCA accepts donations of money, volunteerism and fundraising.

Cranio Care Bears keeps a list of supplies that they need for the care packages and also accept donations of money.

Cranio Angel Network accepts donations of money also.

Please consider making a donation to one of these organizations. It's hard to put into words how much their support, no matter how big or small, meant to Desi and I during that time.

September is also Craniofacial Acceptance Month. Even though there are only a few more days of the month, acceptance should be on our minds always so please take the time to share this with your friends and family.
How can you say no to that face?!

Thursday, July 26, 2012

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!!