Effervescent

Keira is lovely. She's doing so well these last few weeks. Every day, I think of writing, and every day I resist. Not only is Keira doing great, I'm doing well, too. I feel more peaceful, more balanced, than I've felt in a very, very long time, if ever. I think the three-month forced time-out was really good for me. So, anyhow, I think I have a little bit of a fear that any minute, sh** will hit the fan again. I suppose I avoid writing, in part, due to a subversive superstition that the mere mention of how great things are going will tip the scales in the wrong direction.

In the past few months, I've "met" several mothers of children born with cCMV whose kids are about the same age as K. There's Nick, who I met at the conference in September, whose breathing/coughing/snoring sounds remarkably like Keira's. There's Rae, whose just had the double hip surgery that K will be having before long and whose smile looks so much like Keira's. And Elijah, whose plethera of adaptive equipment looks very similar to K's. It's nice to have these cursory connections to other families with similar kids.

Our "Bear"

One cCMV mom recently referred to her daughter as "effervescent." The word has stuck with me as a perfect description for Keira, so I'm stealing it. During these days and weeks that Keira is so happy, she is effervescent. It's like she has so much joy inside that it just bubbles out of her in sweet smiles and giggles. Her smile is infectious. It's hard to describe. People besides her immediate family talk about how her smile lights up a room and I don't think they are just trying to flatter me/her. It is just so pure and so sweet.

Man, I wish I could be a better predictor of what makes these good weeks turn into not-so-good weeks and back again, but I'll take it! When K is happy, she doesn't need to be held constantly and she accomplishes more in all of her therapies. Here's the latest:

Halloween

-K has a new chair that fits her really nicely and puts her in a great position to be able to hang out with me while I work in the kitchen.

-K is doing great things in feeding therapy. She is getting better at taking her bottle and experimenting with lots of table foods.

-She's working harder all the time at holding up her head. She really does seem stronger at this. When I carry her chest to chest, she often tries to hold her head up and look around and I can tell that she has more appropriate muscle tone because it doesn't feel so much like I might drop her.

-She's ON A DIET! Seriously. The last time I was really worried about her, she was sleeping a ton. I took her to the doctor and found out she'd had an enormous growth spurt- an inch and almost a pound in just a couple of weeks! The GI actually feels like her height to weight ratio is now OVERWEIGHT, so we've cut back on her nighttime feeds!

-She's actually met some goals. I hate the goal-setting part of therapy, but was so suprised when we did an annual review recently and came to find that she had actually completed two goals! She 1) has become much more able to tolerate being out and about with the family in environments like church, restaurants, and the rec center and 2) she is able to communicate yes and no.

Physical Therapy

-It seems to take a long time for a question or command to register in Keira's brain, but if we are patient, we are discovering, there is a lot she can do/communicate. A couple of examples: In speech therapy, within one session, K learned a video game! She had a large button to push, and each time, a piece of a puzzle would appear on a computer screen. After 6 pushes/pieces, the whole picture blinked and played music. Very impressive! At feeding therapy this week, we did some work with Keira's bottle. Not usually one for taking a bottle away from home, we didn't expect much. However, the therapist went ahead and attempt to have her suck the bottle, do some exercises, suck the bottle again, do exercises, which Keira complied with. On the third attempt at the bottle, Keira clearly made her "no" face, then reluctently went back to sucking the bottle, then turned her head to look squarely at the therapist in a manner that clearly said, "Is this what you want?" She is just so sweet and works so hard. Often, on the way home from feeding therapy, in particular, Keira laughs and talks to herself in the car as if she is so proud of all that she did that day.

We recently started speech therapy (which, coincidentally, puts us at one therapy appointment every day, Monday through Friday). The speech therapy is located in the same building as Jump Start, a local program for kids aged 3-6 who need intensive therapy. It's a group program that meets several hours a day, several days a week. It's well known as one of the best things around for kids with serious developmental concerns. Well, I haven't been real excited about the prospect of her actually becoming 3 and entering this program, but my mind was pretty much changed the first time we went to the building to attend speech therapy. Our appointment time happened to coincide with the start time for Jump Start. My mom and I were in the empty waiting room with K until suddenly, it began filling up with kids and their parents. It was the sweetest thing every. One by one, they filed in. A little girl with Downs Syndrome ran into the front room like she owned the place and promptly crawled up in the chair next to Keira to pet her. A boy using a gate trainer walked by, excited to tell his therapist about his most recent achievement. Another little boy, also appearing to have Downs Syndrome, walked in the front door and took a bow, then looked around, as if to say, "I have arrived and now the party can start." It was so fun to see this group of kids, each of them so excited to be there, so excited to be with eachother, and very ready to welcome Keira as well. I left feeling like this could be her place, too.

Watching "Elf"

I've been cleared by the cardiologist to do pretty much whatever I feel like doing. Though I still like to nap, I don't feel so ruled b

y the need to sleep as I did before. I'm trying to get back into an exercise routine, though that's still going pretty slowly. The good news is that I can hold and care for Keira without too much pain or fatigue. I've really enjoyed this last few weeks. I've spent time with the boys in their classrooms and have even done a couple of art projects with the students. I refrained from committing to the church's Christmas pageant and teaching dance this season. I miss both, of course, but I think it's been worth it to be able to be so available to Jeff and the kids. As they say, the kids are only young for so long and I can likely go back to those other things later.

Happy Holidays, Friends!