Surgery Date

We met with our cranio facial team last week. The whole experience was a whirlwind! We got to the hospital a little after 8 and were taken into an exam room. We stayed in this room all morning, and the doctors rotated to us. First, we met with our neurosurgeon, Dr. Bui, and cranio facial plastic surgeon, Dr. St. Hilaire. They went over our CT and confirmed that Grayson has complete fusion of his right coronal suture. They explained again the two different surgeries (endoscopic vs. cranial vault reconstruction {cvr}) and the pros and cons of each. Ultimately, we decided that the endoscopic surgery was the safest for Grayson.

The main risk with the surgery is blood loss (which is a lower risk than the cvr surgery). So, Michael donated 2 units of blood before we left. The main draw back to this surgery is that Grayson will have to wear a molding helmet for up to a year after the surgery. We will have to take him to New Orleans every week for a while to adjust the helmet. There is also a possibility (30% chance) that Grayson will need a second surgery in the future. However, Dr. St. Hilaire said that out of his over 70 patients that have had this surgery, zero have needed a second surgery. Sounded like a pretty high success rate to me! He did admit that because Grayson has one side fused it causes an asymmetrical skull (as opposed to symmetry with both sides fused). So, even though he only has to do one incision on one side, it is harder to achieve the best results. We did not mind this because our ultimate goal is to provide room for Grayson's brain to grow (not to achieve the perfectly round head).

We did not choose the cvr surgery because it has a higher risk of blood loss, a longer recovery (with more swelling and more pain), and we would have to wait until he was at least 6 months old for the surgery. The drawback of waiting for the surgery is that it allows more time for the skull to grow and become more asymmetrical and put more pressure on the brain.

After our decision, they scheduled our surgery for May 6th (less than a month away).

Then, we met with a dentist, social worker, geneticist, orthodontist, pediatric ENT, pediatrician, and speech pathologist. Because Grayson is so young, none of them really had much to do. We had a lot of pictures taken of Grayson (his Pfeiffer's and right coronal craniosynostosis are pretty rare) and even some of Michael. They did som bloodwork on Grayson to determine his type of Pfeiffer's. And, we filled out his surgical paperwork. It was really neat how well oiled the day was. Every time one doctor left the room, another came in.

I'm posting some pictures that explain everything better than just reading it. I got these pictures from neurosurgery.ufl.edu. It has some really good information about cranio and a good article on the endoscopic surgery.

The first is of a right coronal fusion and the second is showing what segment of bone is going to be removed. The third picture is showing how the bone is removed during the endo surgery (but on a different suture). The fourth and fifth pictures are of different types of molding helmets (we will be going to Hanger in New Orleans for his helmet). The before and after picture is of an endo repair of left coronal cranio. The last two pictures are showing Grayson's slight asymmetry.

1 Year Gluten Free

So, this March was my 1 year gluten free anniversary. It is hard to believe that I haven't eaten anything with gluten in a whole year (minus a few accidents and possible cross-contaminations)!

The good news for anybody starting out on this journey: it gets easier! I have sort of developed a routine when it comes to grocery shopping and eating out. I have my basics that I get every time (meats, salads, gluten free pasta, vegetables, frozen gluten free meals). We also have our places that we know are safe places to eat (chick-fil-a, five guys, Tabella's, McAllister's). I have also pretty much stopped craving breads. It was difficult for a while in my pregnancy, but I no longer wake up wanting Krystal burgers.

The best news: I feel better! I cannot remember the last time I complained about my stomach! No more crying in the bathroom in pain. I think I have more energy, but I happen to have a 1 month old who steals it.

The hardest part, for me, is still the lack of convenience and variety. I do get tired of eating the same things all the time, but it is so inconvenient to break out Google and look up new foods or places to eat. I think this will only get better with time. Since I have been diagnosed, I have seen my grocery store's GF selection grow tremendously! I am slowly finding more and more new things to try. I think more restaurants will catch up with the GF trend in the future.

1 Month Milestones!

Grayson is 1 month old! I cannot believe how fast this booger is growing! (I wrote this post at 1 month and forgot to publish it!)

Milestones:
- Can pick up head for short periods of time
- Rolls from back to side
- Plenty of gas grins
- Gives big, wet, open mouth kisses
- Loves to suck on his wrist
- Hates baths
- Hates diaper changes
- Weighs 8 pounds 4 ounces!!Wow!!
- 21 inches long
- Wakes once during the night (most nights)
- Sleeps in his crib!! Wahoo!!
- Is pretty much the cutest baby ever!!

Grayson is such a good baby! Poor thing has a Virus right now and an upset tummy! But he is still in a good mood most of the day. I love Baby Wise and getting him on a schedule! It has been a savior as far as getting us some sleep at night, and forcing me to put him in his crib!

I did end up having to supplement my breastfeeding with formula. I tried everything to increase my milk production (fenugreek, Reglan, pumping between feedings, feeding for longer). The doctor thinks that he may not have a great latch because of his facial asymmetry with the craniosynostosis. Whatever the reason, I am just glad to be done STRESSING over making enough milk. Now, I just breastfeed some and pump when he takes a bottle. I hope to keep giving him at least one bottle of breast milk a day until his surgery.

First 2 pictures are at 1 month, second 2 are at birth: