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?!

Location:New Orleans, LA

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!

Nine Month Well Baby

Yesterday Desmond had his 9 month Well Baby checkup with Nurse Practitioner Bennett. He is doing very well and is hitting all of the right milestones and growing perfectly, even in his head size.

Dr. Sluis came in and took a look at his ears for me. I told him that the ENT was wanting to wait until June 21 to recheck for the infection and he agreed that it was not worth putting off the surgery for. For right now it looks like the infection is gone. He said there is some uninfected fluid in there and to come back in a few weeks and he'll check again. It was nice to be reassured that I'm not just in a hurry to get this over with. He didn't see why we should have to wait that long.

Nurse Bennett didn't really apologize for brushing off my concerns about Desmond's head at his 6 month Well Baby, but she did express how glad she was that Dr. Sluis caught it only a month later.

So now we go back to Dr. Sluis in two weeks and as well as the ophthalmologist. Man, I have never spent so much time in doctors' offices in my life!

Even though these photos are a few weeks old, I'm going to post them since they were taken on Desmond's 9 month birthday.

Last weekend while Nana was here we went down to the rose garden and shot some Easter portraits.

ENT & Plastic Surgeon appointments

Today Desmond had his appointments with the ENT, Dr. Caron, and the plastic surgeon, Dr. Angel. Both of them went well and were over very quickly.

Dr. Caron took a look in his ears and throat and we talked about the reoccurring ear infections he's been having. As it turns out, children with skull deformities are more likely to have these kinds of problems since the shape of their skull can effect the shape of their ears. So, he said he'd keep an eye on them and make sure the infection is gone before we go ahead with surgery. We have a follow up visit scheduled for late June. I guess this means Desmond won't be having the surgery until after that.

Dr. Angel came and took some measurements and photos of Desmond's head. He explained that not only will they be taking the skull apart in the rear portion of his head, but they will also have to do this to his forehead to reshape it. Unfortunately, it's a strong possibility that this will have to be done in two separate surgeries.

We got to take a look at his CT scan and it's amazing! There is absolutely no sign left of his sagittal suture or his soft spot. Dr. Angel also pointed out that his eye sockets are different shapes, which I thought I had noticed lately but thought I was just being paranoid.




Desi and Dr. Angel go over the CT results.

The next appointment will be with the opthamologist on May 12 and then we go back to the neurosurgeon on May 27.

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CT Scan

This morning was pretty trying. Desmond was not allowed to have anything to eat since midnight last night. Since he's sleeping through the night now that means he hasn't eaten since 8:30 last night. I hoped to get up before him this morning and eat breakfast, but he woke me up and stared at me the whole time I ate my bowl of cereal. I felt so guilty.

The CT staff at UMC has been really nice. Desmond cooperated with them while they took his vitals and went under anesthesia very easily. After he got the gas they sent me to the waiting room, which is where I am right now. It was hard to leave him so vulnerable and alone with strangers, but I had better get used to it I suppose. This is going to be our life for the foreseeable future.

So now I just wait.

Well, I didn't have to wait very long at all. Only about ten minutes after going to the waiting room they called me back and when I walked in the room he was awake and being held by a nurse. He immediately started leaning toward me whining. I nursed him right away and he stayed there for quite a while.

We stayed with the CT nurses for a while so they could watch his stats. Desmond was fascinated by all of the cords attached to him.




After a short while we were sent home. We stopped by and saw Heather and Bobby for a short visit at Pearl High School and now we are back home just enjoying playing and hanging out.




Desmond was such a brave little fella today. I only hope I can muster up the calm and blind trust that he showed today throughout the rest of this process.

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Location:University Medical Center

Desmond's Beautiful Head

Desmond and I were in Jackson yesterday at UMC having confirmed what his pediatrician was afraid of. It turns out that he had sagittal craniosynostosis, which is what causes the narrow, cone shape in the back of his head.




This is caused by the premature closure of the sagittal suture in his skull. So far, this has not done any damage to his brain, but in the future it could cause developmental delays if it's not corrected. So, some time in May or June Desmond will have surgery to correct it.

We have known for about three weeks that he might have to have an operation, but it wasn't for certain until we saw the pediatric neurosurgeon yesterday. I've been preparing myself for it the whole time though, so it wasn't a big surprise.

In the surgery they will take out parts of his skull, reshape them and put them back in to give him a "normal" shaped head. He will be even more beautiful than he already is, if that's possible.




For now we are just waiting on all of the new doctor appointments he will have to have with the ENT, plastic surgeon and opthamologist. It's going to be a long road, but we'll make it alright.

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