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!!

Saturday, September 10, 2011

Surgery Come and Gone

Wow! The fated day finally came and went. It wasn't easy and it's still not, but I'm relieved and Desmond is on the mend. I'll start from the beginning and try to give some details, but this may still be brief because I am bone tired. We came to New Orleans on Wednesday and checked into the wonderful vacation rental my sister booked so we would have a place to cook, shower and rest during our stay at the hospital plus a few days after we get out. The long walkway to the gate was the perfect spot for this little walker to get some practice and for momma to get some good pre-op photos.
He loved all of the different plants in the garden.
Desi had to point out everything. 

Wednesday morning Desmond was pretty amazing considering he hadn't had any solid food since dinner the night before. We checked in at New Orleans Children's Hospital at 10 a.m. and were in a room waiting for surgery by about 11. Rhonda and Willie, Desi's grandparents on his father's side, arrived right as I was having to pin him down so the nurse could draw his blood, which I'm sure was not a very comforting site for them. But that was soon over and we all got to just hang out with him for about another hour before they called us back for triage. In the mean time, he fell asleep and was given some "giggly juice" so he would be nice and relaxed when they had to take him away from me. He never even woke up.

They took him back at around 12:30 and told us that the surgery wouldn't actually begin until about an hour later and that it would be an hour and a half to two hour long surgery. So, we were hoping to hear something from them by about 3 p.m. They came and told us when they made the incision, which was at 1:20 p.m. We all sat together, my mom, Willie, Rhonda and myself, and talked about what a great little boy he is.

Not even an hour later the door to the waiting room opened and there stood Dr. McBride, the neurosurgeon, and Dr. St. Hilaire, the plastic surgeon, telling us that everything was over. They said everything looked exactly as it had in his scans, sagittal suture completely fused from front to back. All of the other sutures looked fine. He did have to have a blood transfusion (thank you Elihu!!), but that is normal. They said it would be about an hour before they would have him cleaned up and awake for us to go see him. This is when I began to get impatient. It took longer than an hour and I started to get worried. Just as I was about to lose my patience and go ask someone what the holdup was, they called us back.

When I walked in the recovery area a nurse was trying to give him a bottle of apple juice. He saw me and started crying. When I came over and took over with the bottle he was content and started to fall back asleep immediately. It makes a mamma feel good! He was not swollen badly yet and they didn't shave his head one bit, so you could almost not tell he had anything done. They were ready then to wheel him to his room, so we all followed him up and got settled in pretty quickly. He went straight into my lap and stayed there for a few hours.

The poor little fella was so exhausted!
The Browns had to hit the road because they had a death in the family and had to get back to Magee for the wake and the funeral. They said their goodbyes and promised to come back on Saturday to see their big boy. Later that evening Toi got in from Los Angeles and brought us some humungous shrimp po-boys from the store across the street from our vacation rental. I ate with a sleeping Desi in my lap and hoped I didn't drop shrimp crumbs on his incision. It was oddly reminiscent of the time right after his birth.

Dr. McBride said when we lye him down in the bed to make sure he lays flat on the back of his head to help flatten out that bump he used to have back there and to prevent him from getting any flat spots on either side of his head, but it's pretty hard to do. I never really thought about it before, but he has never been able to sleep with his head straight. The bump in the back has always caused him to turn to one side or the other. So he has a little donut pillow to help him keep it straight and hopefully he will learn soon to do it on his own.

The first night he would start to bleed behind his right ear when we laid him down, so they had to put a bandage around his head and it looked like a big, white turban. Still nothing to worry about, the nurses said. Some bleeding is normal. That night they came and took his vitals every hour for the first four hours and then for the next four hours they came every two hours. The nurses were great and tried their hardest not to wake him. I woke up every time they came in, but I was able to get back to sleep pretty well most times. At about 2 a.m. Desi woke up and was chatting and smiling and playing peekaboo with the nurses. It was such a relief to see those dimples again. It felt like it had been an eternity.
Nana enjoys one of the few times Desi allowed himself to be out of my arms.

He eventually went back to sleep and so did we. We were all up by 6:30 and mom ordered our breakfast to be sent up with Desmond's. Desmond ate most of a banana some yogurt and drank a carton of milk. He has always been such a champ when it comes to eating. The swelling was a lot worse that morning, especially on the right side. His eye was mostly swollen shut and he had a mean shiner. They said it would probably migrate to the left side of his face too and not to be surprised if the other eye swelled shut as well, but fortunately that never happened.

We spent most of the day just hanging out in the room with the Desmonster. He was playful and sweet most of the time. The doctors and all of the nurses have said they wished all of their one-year-old post-op patients could be as awesome as he is. We played bubbles a lot!! That is hands down the best thing I brought with us to the hospital. He points to them at least ten times a day and says "bubbles!" He even said "pretty bubbles" once!!

Today, the swelling has gone down significantly. His right eye is not completely swollen shut and the bruising is starting to fade already. He had to have another blood transfusion because his red blood cell count was down, which, again, is normal.

Desi and I chill while his wonderful nurse, Sabrina,
finishes all of the paperwork for the transfusion.
They have him hooked up to that right now as I'm writing this. I left him in the very capable hands of his Nana and his aunt Toi so I could get some fresh air and some time alone for a bit. I've pretty much been holding him nonstop for the past three days, except for a few hours at night when he's asleep. He won't let anyone else hold him if I'm in the room and I'm completely exhausted. After his blood transfusion is completed he is going to get a bath!!! We get to wash his hair. It's probably not going to be a pleasant experience for him, but his hair is some kinda funky after all of the blood and all of the antibiotic ointment.

They said after the blood transfusion that he will feel a whole lot better and he MIGHT be able to be discharged tomorrow if his blood count stays up. So keep your fingers crossed for just a little bit longer that we get to get out of this hospital and move on to healing in the comfort of our very own vacation rental for a few days and then Nana's house on the coast.

I'll try to update the next time I have some good news. I want to let you all know that I could not have made it through all of this, from the very beginning when he was diagnosed, without each and every kind word and encouragement. From my close friends and family to people I haven't seen or talked to in a decade and complete strangers from all of the craniofacial organizations and their supporters, I am humbled by the love and outpouring of support. Thank you so much...and keep it coming 'cause this isn't over yet.

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

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!