You may have seen (from Instagram stories) that we’ve spent a lot of time at the hospital this week. I have done my best to be an open book and share as much as possible when it comes to Deuce’s condition, because it’s so rare and I believe in advocacy and raising awareness. But writing this update is excruciating and I have been putting it off for days. I’ve been getting lots of messages from family and friends asking for an update on Deuce, and I appreciate how invested people are in his story and how much love there is for him.
In case you’re unsure of what I’m talking about, here’s a little background. When Deuce was born, we noticed that his head shape didn’t look right. The nurses reassured us that this was because he was born sunny side up and that this is common for those births. When he was a month old, and his head was only getting more deformed, I asked my nurse friend, Chelsea, what she thought. She recommended I bring it up at his two month well check if it still hadn’t gotten any better. So at his two month appointment, I brought it to the pediatrician’s attention and she diagnosed him with craniosynostosis on the spot. That day we were referred to a neurosurgeon, plastic surgeon and physical therapist. At three months old (July 2016), he had skull surgery and we spent 2 days in the PICU and one day in a regular hospital room before going home. Then, he spent 6 months in a helmet (called a doc band). We thought we were done with the hardest part of this whole journey when he “graduated” from his helmet in January.
My husband and I have had a few small concerns with Deuce’s head shape recently. After his helmet therapy, his head shape looked amazing and the best it’s ever been. But last month (four months since his graduation) we noticed a few ridges and that his head was getting more narrow every day. After his first hair cut, we became even more concerned because we could clearly see his head shape and it looked similar to before his surgery last year.
At his last doctor appointment, we raised our concerns to the pediatrician and he said that Deuce has clearly regressed and that we needed to see the plastic surgeon again (and also an optometrist). That’s where we were on Monday. They took pictures, did scans, assessed him and the plastic surgeon told us she wanted us to see the neurosurgeon ASAP. She also told us that this sort of regression is very unusual and that she is very concerned. So on Wednesday, we went to see the neurosurgeon. After measuring, assessing, and whatever else he needed to do, he let us know that there are three options. Option number one, is not doing anything at all. This could lead to problems in the future (since the brain can’t grow properly when the skull is fused), such as migraines, seizures, blindness, etc. Not highly likely, but possible. Option number two, putting him back in the helmet. He said he doesn’t think this is the best option since his skull has already gone through it’s biggest growth spurts. Option number three, reconstructive surgery. He seemed to be leading towards this option.
He said he was meeting with the plastic surgeon this week to discuss Deuce’s case and to choose the most ideal option. We should know in the next few days.
We are praying for the surgeons to create the best possible plan for Deuce and to make the best decision even though none of the options are ideal. Each option has pros and cons and there isn’t one option we prefer over another. We are so grateful for the out pour of love and support for our sweet boy. Every single day I wake up and feel lucky to be his mama. I can’t even begin to find the words to explain how long and agonizing this entire process has been. Almost a year now of weekly (sometimes more) hospital trips, poking and prodding, fittings, scans, etc. Life is not fair sometimes. I keep going back to the post I published last July and I’m trying to find the same strength that was so apparent then.
We go in tomorrow morning (Friday) for more scans and after that, we should have a better picture of what’s going to happen.
Thank you, thank you, thank you everyone. Seriously, your support means the world to our family.
Xo, The Garcia’s