Our bubble-blowing, finger-chewing, Pterodactyl-screeching, back-to-tummy rolling man will reach the one month post-op milestone tomorrow. Not that I actually knew what to expect, but he has surpassed anything I could have dreamed of in terms of his recovery.
At our post-op appointment on October 28th (19 days after surgery), our surgeon was blown away by how quickly and how well Gavin's incision was healing. I was a little surprised when they asked our permission to use Gavin's case as an example due to the extremely large calcified cephalohematoma he had prior to surgery. It is the largest they have ever encountered, and they would like to present a paper on his case. They showed me the front-to-back slices from his CT scan, and even though I knew first hand how large it was, I was blown away. The hematoma not only bulged out from his skull, but it dented inward as well. Another unique feature was that instead of the blood from the hematoma calcifying entirely, it had just formed a barrier around the blood. When the surgeon shaved down the calcified protrusion during surgery, the old blood that had been sitting inside gushed out - a lovely surprise, I know.
Although they reassured us that Gavin's head looked fantastic, the surgeon recommended that we
proceed with a helmet to help keep his head reshaping
the way it should. I was a little disappointed initially, but I just keep telling myself that it would be a shame to have gone through so much and come so far and not achieve the best results.
We met with the orthotist on October 31st to have his measurements taken and his head scanned for the helmet. We returned yesterday, November 7th, to have the helmet trimmed and fitted. To say that it didn't go well would be the understatement of the century. Gavin was not feeling well, and had been throwing up all day. He hadn't been overly fussy or whiny, but the second the orthotist put the helmet on, he lost it. We spent 2 hours in the clinic, with the orthotist remeasuring, fitting, cutting, and shaving the helmet - Gavin screamed the ENTIRE time (even when the helmet wasn't on his head). It was terrible. I was so nervous this morning when I went to put his helmet on, but, miraculously, he didn't cry. Not even a little. He didn't smile, but he didn't cry, so I counted it as a win.
We are doing a graduated schedule to get him used to his helmet. Today was 2 hours on, 1 hour off. He didn't have to wear it for naps, but he fell asleep with it on no problem, so I just went with it.
Tomorrow will be 6 hours on, 1 hour off, and the following day will be 8 hours on, 1 hour off and have him wear it overnight. The day after that, he moves to 23 hours on, 1 hour off (for bath time and to clean the helmet). It's hard to not be able to kiss his head when I'm holding/snuggling/reading to him, but I'm hoping that all goes well and he'll only have it for 3 months. We've been told it could be 3-6 months, or longer if necessary. Fingers crossed it doesn't take that long.
Although he's still not sleeping through the night again yet, sleep training has helped him get back on track, and he now goes down for his naps like a total pro. We read a book and then I put him in his crib, and he just grabs his favorite blanket, rolls around until he's comfortable, and goes to sleep within 5 minutes. He still only naps for 40 minutes at a time, but it's fuss-free, so I'll take what I can get.
Gavin was Frankenstein's monster for Halloween, and Greg dressed up as a police officer (not really, I just took his picture when he came home from work). I dressed up as a stay-at-home mom/student: workout clothes with my hair up and no makeup (oh wait, that's how I look every single day!).
Gavin is rolling from back-to-tummy all the time (even in his crib when he is supposed to be sleeping), and has started pulling his legs up underneath him when he's on his tummy and pushing his bum up in the air as he tries to go somewhere. He just ends up pushing his face into the ground, but he keeps trying. He's also discovered how to splash the water in his bathtub with his legs - funny, but very messy. He puts EVERYTHING into his mouth that he can get his hands on, and he screeches all the time, as loud as he can.
Even with all we've been through, I am constantly reminded how blessed we truly are. Sitting in the waiting room in our pediatric orthotist's office, I was reminded how lucky we were to just be getting a helmet. There were individuals there with braces, prosthetic limbs, and conditions that required so much more than a helmet for 3-6 months. I am amazed at how fortunate we are to have such a resilient and bright baby boy - I wouldn't trade him or any of our experiences with him.
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