Winter Update

I have put off blogging for so so long. I think about it every day. I have so many unclear thoughts and ideas and feelings floating around all the time. There's been a hell of a lot of melancholy lately. I'm not unhappy. I'm not depressed. Jeff would describe me as sullen and withdrawn. I keep putting off writing… waiting for all of these ideas to stop swirling around and make sense of themselves. I keep waiting for the thoughts and feelings to drop them selves into tidy little bins in my brain. Preferably with labels on the front of each. But it just doesn't seem to be happening and months keep going by and I figure that even if I can't articulate to you how I'm feeling I can get you up-to-date on what's happening with Keira and the rest of us.

Thanksgiving

The Christmas season was precious and wonderful once again. Friends and family were overwhelmingly generous and supportive. If you follow us on Facebook, you probably witnessed our 12 days of Christmas. We had never experienced such a thing and it was so much fun for us and the kids. Plus, we are still benefiting from all the sweet little favors that were in the baskets!

Obviously, our favorite pose!

We left the day after Christmas and drove all the way to San Diego for our long-awaited family vacation. We had a spectacular time. A day at Legoland, a day at Sea World, and since Keira was still doing amazingly well, a day at the San Diego Zoo! I just can't get enough of my sons. They're such good kids and so gracious in spite of everything we have put them through. We had a fabulous time and I wish we could do this sort of thing as a family more often. Keira did unbelievably well! I mean, better than she does at home! She slept like a champ, and didn't even throw up at night. She seemed totally content as long as we were all together as a family and/or outdoors.

Legoland hotel

Watching a beluga whale!

Keira did so well, in fact, the Jeff and I almost wondered what we were doing wrong at home! When we got home, it occurred to us that maybe she was actually enjoying being busier. So we decided to go ahead and put her in preschool.

I went with Keira to preschool on her first day. She is far more impaired than any other kids in her classroom. They can all walk and talk at least a little bit. I wanted to show the teachers and assistants what Keira could do and how she could be incorporated into their activities. She really seems to enjoy being around the other children. So, once a week, we put her on the bus and send her off to school. Three hours later, the bus drop her back off again. I have very little knowledge of what actually happens when she's there, but she seems happy to go and happy to come home. And it's a three hour haven every Monday morning in which there is nobody home but me.

Circle time

Showing her stuff on her first day of school

The tonsillectomy in November ultimately helped Keira's sleep quite a bit, but didn't help her vomiting much. However, we seem to have found a magical concoction of meds that has nearly eliminated Keira's vomiting. We've started her back on Glycopyrolate, which dries up some of her oral and nasal secretions, which we think leads to less coughing, and therefore less retching and therefore less vomiting.

We found that Keira has grown substantially, about 2 inches, in the past few months, but has gained zero weight. We've had to increase her intake again and so far she seems to be handling that alright.

It was an epic saga, but we FINALLY got Keira's bike all ready to go. Of course, she loves it, and we're excited to have the option for exercise and/or family outings that involve Keira.

We keep having transitions. I suppose it's inevitable given the number of providers Keira has. Her PT had to close her practice, so we are on the lookout for a new PT. This loss was particularly sad for me. It was the end of an era. We had a wonderful crew of therapists for the first couple of years of K's life, and this PT was the last of the group.

I can't complain, though. Keira's current team has built excellent rapport with her and she is making progress. In fact, she's done some amazing things since her last surgery. A couple of clinicians have suggested that before her tonsil surgery, Keira may have been somewhat oxygen deprived. This would explain why, since the surgery, she has discontinued using her primitive ATNR reflex, startles less easily, and displays fewer muscle spasms/clonus overall. She's swimming better than ever before, stands up straighter in the stander, and is kicking herself around on a scooter! She even met a goal of holding up her head for a full 20 seconds. Woohoo!

Breaking records!

Looking forward, we have no surgeries this year that we know of. We have our fingers crossed that we will be able to afford to move into a one story house this year. We have a reservation for Keira to be seen in the wheelchair clinic, which will help build Keira a custom wheelchair with the capability to attach useful communication devices/tools. We plan a short trip to northern Idaho to ride the Hiawatha trail as a family and with some friends. Overall, things are looking up, or at least stable, for the year. I hardly know what to make of it.

At Brothers' basketball games

Thank you all for your continued love and support.