Fighting "The Tube"

Loooves Uncle Matt

Keira continues to do really well. She was a trooper (side note: Ronin said, "What kind of trooper? A storm trooper?") through all of the Christmas hullaballoo. She participated in even the major Christmas Eve Hall Family Gathering by keeping her eyes and hands open. Of course, she didn't really follow all the gift-giving, but I think her favorites were: 1) the caramel coffee syrup that Aunt Tami gave her to help spruce up her sludge, 2) the vibrating pillow from Uncle Matt, and 3) the stuffed giraffe that Liam helped Grandma Sharyn make. I particularly liked her new striped baby legs and her funny 2-pronged, molar-reaching pacifier, not that I picked those out myself or anything.

Grandpa Ron and Uncle Matt accompanied Keira and me to the GI doctor a couple of days after Christmas. The doctor felt like he was eating his words a bit (last time he said that Keira seemed to be growing just fine at her own pace and taking in as much food as she needed) in that Keira had grown 2 inches and lost an ounce or two. So, of course, the growth chart shows a dip in progress and the next step, if she doesn't pick it up soon, is a G-tube. The doctor admitted that Keira is the only patient he has ever had that has actually eaten the sludge by mouth. "So," he said, "let's just do a trial of some more flavorful stuff and see if she does any better. " Lo and behold, with an assortment including chocolate, strawberry, vanilla, and banana cream, K has been eating an average of 2 more ounces a day, which is significant if your grand total for the day is usually no more than 15!

Keira seems to take two steps forward and one step back. During our week away in McCall, it was interesting how one day, she would be extremely vocal, holding up her head and upper body in ways we rarely see, and the next day she'd be super quiet and subdued. She actually spent several hours in her bouncy seat one day, listening to the football game perhaps. She did fine, though, particularly in light of last year, when we struggled to get her to regulate again for several days after we got home.

We get this view a lot...trying to encourage her to lift her upper body. 

On one of her really good days during our vacation, she really got the hang of sucking her own thumb. She even figured out that the thumb belongs to her, after drawing her own blood and an ear-piercing scream! On that day, I also noticed a lot of twitching in Keira's muscles. Tremor-like feelings in her legs and arms and sides. I've felt those before, but never so many. I, of course, wonder about seizures, as she is high-risk for those, but these particular twinges seemed to have more to do with her trying, ever so much, to get those muscles to work. It's a little sad, really, but I choose to think that on those good days, there is some volition there and one of these times, she'll figure it out.

Keira has not been sick since we got the vest. We've sure gotten a kick out of this thing. Jeff articulated right away that the process sounds like goats parachuting from a helicopter. K has to do this 20 minutes twice a day and she'd loved it every time. Not only has it served to keep her lungs clear, so far, it seems to stimulate her muscles and brain in a way we've been unable to do otherwise. Within the first 2 days, we noticed Keira sleeping better, eating better, being more content overall, and making more sounds. The OT noticed increased muscle tone in her whole body after one week! I had even thought it might help dislodge all of the gunk clogging her ear tubes, but that was unsuccessful. That stuff isn't going anywhere! All in all, it seems to be a worthwhile gadget. Note: Do not be alarmed if you are at our house and you hear me ask Jeff to "go shake the baby."

Besides the vest, K's also got her RSV-preventing Synergist injections and a couple of other PRN medications. Here's hoping we can stay hospital-free this winter!

Progress continues to be very, very slow, but it's not too hard, I suppose, to take things in stride. She's happy, which makes everything so much easier, I think, than if she was an unhappy kid. Getting a squeal out of her takes no more than a little bounce or a tickle or tousling her hair, which makes her shrug her shoulders and squint her eyes. I spend a lot of hours holding her and it's not that uncommon for her to look up at me and just start laughing for no reason. Love it.

Keira loves her brothers to pieces, too. Both boys can distract her and make her laugh now. Liam and Ronin both have come to my rescue recently, watching over her for 10 or 15 minutes while I finished a project. The best part is that it makes them feel so helpful and successful, too.

Jeff and I both can't help but think about what Keira is going to need in the future. For me, this manifests in my propensity to introduce myself to parents in public places who are pushing their kids in wheelchairs. For Jeff, it's noticing a "really cool" wheelchair ramp or hoist attached to a car. "Write down 'Braunability,'" he told me recently, "We might need one of those."

Not feeling so well after FIVE shots, but definitely cute in her newest outfit ala the Nashville airport.