All the boys did really well as far as gifts go! Ethan's favorites by far are Grandma Lori's Thomas the Tank tent and Granny Jen and Papa Ryan's Sherif Woody doll with the pull string! I cannot begin to explain how many times I've heard "there's a snake in my boot," "this town ain't big enough for the two of us, no wait just kidding of course it is," and "hahaha that tickles," since Christmas Eve. The best part is that Woody has an off switch for when its bedtime! Ethan had slept with it for almost a week now.
Gavin and Gabes favorite gift is the crib soother and projector from Dustin, Lyndsey, and Graham. We haven't heard a peep out of them at bedtime since it was placed in their crib! :)
Gavin was evaluated by speech therapy on Friday. They thought he had an occult submucous cleft in his soft palate as well as a possibly structural abnormality in his esophagus. We had our swallow study and he shows now physical abnormalities and has no aspiration. His medical team has decided that his eating difficulties are due to poor muscle control from his PVL. We will continue to work with our speech therapist Christy and hopefully find a way to make eating more successful and comfortable. We also saw our orthotist today, Jackie. She diagnosed Gavin with severe plagiocephaly and his torticollis is now mild-moderate. If left untreated it can cause vision, breathing, hearing, eating, and mobility issues. The jaw will grow uneven. Their ear canals will be stretched and narrowed. It can cause eye placement and retinal issues. It can cause breathing issues due to disfigurement of the sinus cavity and placement of nose. It is also a cosmetic issue. So we have to get helmeted. They go 2/1 to get sized and will be fitted in 2/11. They will have to wear them 23 hours a day for a projected 4 months. They said insurance covering it is a toss up. Yes it contributes to their disability but they said its not always covered because most of the time they argue that its just cosmetic. So if not each helmet costs $2000. They said they can arrange payment plans but we are definitely stressing this expense on top of their nicu, pt, OT, st, cardiologist, neurologist copays and deductibles. They also again today said Gavin shows all the signs of cerebral palsy and asked if we've had an official diagnosis. I'm not sure where to go. I still haven't heard about our developmental pediatrician referral. I've called the pediatricians office to share our findings and see where we are on the referrals but no call back yet!
Gabe is now laughing and cooing up a storm. His range of motion in his next has improved so much but only with assistance. He still has a strong natural inclination to keep his head to the right. As you read before, gabe was also diagnose with severe plagiocephaly.
Ethan's doing great. He isn't saying any words yet besides dada. We are working on baby signing. It's a little late in the game to start, at 16mo, but we are hoping that associating the words with the hand signs will help him realize what it all means.
We are having a hard time taking the pacifier away from him. Currently he is only getting it at bedtime but somehow always seems to find one. As he's gotten older I just blamed the mystery of the missing pacifier on apartment. Just like the dryer eats missing socks, our apartment eats pacifiers, and thermometers, and nose suckers. But- it was Ethan. He hid them in super secret hiding spots and is now beginning to bring them to the surface. It's like he instinctually knew that one day we would phase them out so he needed a back up. The other morning he woke up with a preemie mam in his mouth. Granted he could've put the whole thing in his mouth but instead sucked on it correctly, looking like a geisha with those tiny red lips.
Other then that here are some pictures! Thank you all for everything :)
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