Just a quick re-cap, he had his first Cranial Reconstructive Vault in mid-December; this is where they went in and took off the front portion off his skull, shaped and sanded the bumps done, put it back on and left about 1 cm of space. ENT also put tubes in his ears; Jameson has always had fluid build up and never successfully passed a hearing test.
Where we’re at today:
We’re about 3 1/2 months post-op and Jameson is doing great!! You can barely see his scar, you wouldn’t even know it was there if you didn’t look closely (and he definitely doesn’t act like a kid that’s had major surgery!). The craziest thing about his scar is that you can literally see how it stretched as his head continued to grow post-op. And it’s more stretched on the sides than the top of his head.
His appetite increased a lot after his surgery and he’s had a nice little growth spurt. He is officially bipedal; I have the widest shoes for his little feet, but am investigating if there are better options for him because of his big toe curving out – I don’t want to squish his tootsies in there!
We no longer have plug-outlet protector’s because he likes to walk around the house and take them out one by one. So, I stopped putting them back in, lol. It has worked he doesn’t go near them now.
He might possible believe Tennessee is his own baby. He adores the dog and is constantly following him, and hugging him, and “barking” at him. And he is sure to make sure the dog is fed. He has a one-for-me, one-for-you routine down during meals, he takes a bite of his food and drops the next one the floor, lol. It is actually one of the most adorable things. I thought Jackson loved Tennessee, but Jameson LOVES this dog!!
At Jameson’s 6 week post-op follow up Dr. Fearon was very pleased. Jameson’s head had expanded an entire 2 cm, and his scar was healing beautifully. We also had a follow up with ENT while we were in Dallas to make sure the tubes were in nicely. The tubes looked good, and there wasn’t any fluid in his ears, but he still couldn’t pass the hearing test…
The recommendation from the audiologist who put his tubes in is to have an ABR done. This was the original recommendation from a different audiologist last summer/fall because it’s the only way to know exactly how great his hearing loss is; but they also felt it might be best to wait to see if the tubes made a difference. Now, we have mixed opinions on Jameson’s hearing because we noticed a drastic improvement in his ability to hear and his response to sound after his tubes were put in. It has crossed my mind that his ear canal’s are shaped differently and that may be contributing to not passing the test – the test he keeps failing is the otoacoutistic test, where they put headphones in his ears and measure the echo response. He had two other hearing tests where we sat in the booth and sounds were projected from different speakers. The first one he did not do well on, the second one he did okay.
First thing is an ABR. His referral should be here by next week so hopefully we’ll get that done in the next month.
Dr. Fearon doesn’t need to him until July; at that visit we’ll have an in depth eye exam and another sleep study. At our last visit (the 6 week post-op) he explained that the two biggest factor’s in Jameson’s development are going to be space for his brain to grow and that he’s getting enough oxygen – they just made space, so the sleep study will check his oxygen. The eye exam he wants done has some specific things for the ophthalmologist to look at, including the optic nerve, any scarring on the cornea, and strabismus. After that the next visit to Dallas will be in December for MRI #2.
Jameson’s first year we had 4 visits to Dr. Fearon/Dallas, and if everything continues to go well, his second year we will have only 2 visits to Dallas!! I know that some years will be more hectic than others, but I hope that Jameson continues to thrive without major complications. 80% of his brain will be developed by age 3 and if we can make it to 3 for his second surgery I would be thrilled! The next hurdle will be his mid-face advancement between 6-8 years. Otherwise, we are just watching him grow!!
Here are picture’s from the past few months:
Jameson’s 1st Christmas:
Enjoying the beautiful weather 🙂