Here the highlights of the last month:
The Living Christmas Tree
I was asked to do some choreography for our church's Christmas pageant this year. Upon hearing the introductory medley, I imagined Mary proudly introducing her new baby, the worlds' baby, to those in the audience. I thought what fun it would be to dance with Keira up there. I didn't think I would ever actually suggest this out loud, but when I went ahead and dared to, the directors thought it was a great idea. So, today we are halfway through the 5 performances and I am loving the experience for so many reasons. It feels a little self indulgent, yes...dancing on stage at my age, showing off my baby. But I think it is beautiful in a lot of ways and for those who know about Keira, there are layers and layers of meaning. The feedback we've gotten so far has been really positive and Keira absolutely loves it. The spotlight, the orchestra, and the big sweeping movements, she smiles the whole time we're on stage (just a minute or two for each showing). Keira dancing as baby Jesus. I'm in heaven.
Therapy Changes
Some of you will be proud to know that I decided to discontinue therapy with the physical therapist that I mentioned previously. After canceling our future sessions, she asked me for feedback. With a friend's coaxing, I went ahead and told her about the various things that had made me uncomfortable. She was so gracious, and left me with these parting words: "Thank you for your feedback. I definitely need to work on my professional boundaries. I have never been discouraged by Keira's lack of progress but by the limits of what I can do for her. You are such and amazing mom, and if she could be better by sheer love and effort on your part, she would have no limitations." I do miss talking with her from week to week, as a buddy, but I don't miss feeling burdened when she leaves. This possibly contributes to why I've not blogged in a month!
Ladies' Tea
I had the privilege of being one of the speakers for the Ladies' Tea at my church a while back. I read Keira's birth story, more or less as a I have it here on the blog. As I've expressed before, sharing about Keira (and my experience with her) helps me feel less alone. The feedback that I get helps me feel more supported and more confident that people will always love Keira. I've come to believe that part of my identity/self/personality/strength is in being able to be honest. Being able to say things as I experience them. For the most part, I believe that I'm saying what many other people experience but don't have the words for, or can't say for whatever reason. I'm coming to like this part of myself, although it's also a fine and scary line to walk because I am not okay with offending people. At least Jeff, the wise old sage, is there for me to bounce ideas off of. He advised me not to tell the crowd that I voted for Obama. No, seriously.
Exceptional Parent
November seemed sort of like a month of publicity. Exceptional Parent magazine printed an article about Keira and me! The article was a revised version of the "Accommodating" blog entry that I wrote. I was pretty tickled about the whole thing. Unfortunately, this magazine is now only available through web subscription. So....actually showing it off to you is not easy unless you have a subscription. http://www.eparent.com
Queen of Awkward Silences
Lately, I've been the cause of a lot of uncomfortable moments in conversation. You know how talk is around a baby. You both stand and stare at the wee one, saying things like, "She's so cute." "How old?" "She's going to be walking around in no time." I feel really uneasy in these circumstances. I assume, perhaps incorrectly, that at this point what people are really thinking is, "What's wrong with her?" "Why are her eyes crossed?" "Why isn't she holding her head up?" So, in an effort to break the [imagined?] tension, I often introduce, "she's had a rough go at things. She has cerebral palsy." Insert crickets chirping.
See, my intention is to let people in on what's going on so that we can be real with each other (I hate small talk), so they know that I know somethings wrong. SO they know that I'm okay with talking about it. However, what I'm finding is that the other person often doesn't know what to do with such a blunt statement. Doh. I roll my eyes at myself.
However, on occasion, the conversation goes just the way I'd hoped. Rather than crickets, the person chirps up with something like, "Really? What has that been like?" or "I have a cousin with CP" or "have you ever heard of hyperbaric oxygen therapy?" There's always a little sigh of relief, for me, when the conversation goes that way. It's like, "Whew. You aren't scared of me/her. We can have a real conversation."
Out and About
We're finding that, as long as we're willing to carry her, Keira can tolerate going out with the family to do whatever it is we are doing. I took this cute one at Rake Up Nampa. Well....after she'd ran out of patience for Rake Up Nampa and we were waiting in the warm car.
Teeth
She's up to 4 of 'em! She doesn't use them a whole lot yet, but we're working on it. We find that she really like Hershey's bars. And as long as the food we give her can be swallowed without chewing, she can handle it without choking/gagging. It's still just tastes, though. Her calories are still primarily through the formula I refer to as "brown sludge."
It's hard to appreciate how wonderfully orchestrated our bodies are until something isn't working quite right. Keira's poor gums are often enflamed, looking like she could have 3 teeth pop through at any minute. What we've learned is that since she isn't eating solids, like other kids her age, she's having a hard time breaking down those gums. To counter this, we do a lot of massage with her toothbrush, etc.
Colds and Yuck
Keira's had three ear infection now over the past couple of months. Or maybe it's one ear infection that never goes away. Yesterday we learned that the tube (which has already been surgically placed twice) is continuously clogged. And here I learned another amazing thing about how the human body functions. Most 15 month olds are upright a majority of their waking hours, which allows the ears to drain appropriately. Since K is usually not upright and gravity is usually on her right ear (due to her visual preferences, I believe), the right ear is always clogged. So...we're going to try to treat this with a lot of drops/ear goop, and hope that it helps. They don't want to do any more surgeries yet.
Fortunately, we have been able to keep K out of the hospital so far this season. If it weren't for a few cool doodads, I think we'd have been admitted at least once. So, when K gets a cold, she coughs and coughs until she's worn out and then struggles to breath. I bought this cute little pulse oximeter on Amazon for about $25. It gives us peace of mind that she's getting enough oxygen without taking her to the ER.
Because of her hospitalizations last year, K qualified for the Synergist shot. It's a SUPER expensive immunization against RSV that's only given to kids with highly compromised systems. Yay us?
Yesterday, the long-awaited "chest vest" came. The pediatrician helped us acquire this contraption. The goal is to have K wear it every day, whether sick or not. It vibrates and helps clear the gunk out of her lungs. We were pretty excited about it because we anticipated that K would love it. We were right. She laughs and coos and sounds like a goat. And though I'm mostly happy to have it, it made my heart sink a little. For one, it looks like (because it is) medical equipment and has to have a fairly prominent place in her room. The pictures on the cover of the instruction manual had, well, really disabled people on it. My immediate thoughts about that were 1) why is it still hard for me to put K in that category? and 2) disabilities are so common. I have been suckered into the social pressure of what beauty looks like, to the point that I cringe when I see these pictures.
So, last night we put the device on K for the first time. The thing is aggressive! Yea, Keira laughed and stuff, but it has to be exhausting. I know my hands were numb after holding her with it for 20 minutes. It also made me think, "I thought we weren't supposed to shake our babies." It sure helped though. After just a few minutes, she coughed up the gunk that had been the cause of the rattle in her chest all day. Today we joked that if we set her on the floor with it, she'd make her way all around the house if she weren't tethered. Ronin immediately called it her "bouncy suit" and commented that "Keira likes scary things."
I haven't mastered posting my own videos on here yet, but here's a link to cute little Cash (we don't know him) with a similar vest.
http://www.youtube.com/watch?v=vXmkxA0-bXk
Grandma
Things have been normalizing for Grandma, too, I think. She's been sewing up a storm. I'm a little jealous of K's wardrobe these days.
More Woo Woo
I don't know what all this therapist does, but I love her. Not only is what she does somehow affective, she has a lot of wisdom from her 50 or so years of experience and is still eager to learn new things. She recently came back from a training and taught me about "fascia." Have you ever heard of it? She described it as a thin sheath of tissue that connects from your head clear to your toes. When you're cutting raw chicken, and you run into the stringy white stuff (not the skin) that's tough to cut...that's fascia. She said it's used by your body to hold yourself in place when you have muscle fatigue. When the fascia is overused, it can get stuck, thereby reducing your mobility. So, the therapist returned from this training and did a little magic on K's arms to "release the fascia" and immediately and ever since, her arms have had so much more range of motion. Amazing.
I wish I understood this stuff better. And I'm sad to learn that this therapist will be retiring before too long. I was really excited, though, to learn about an upcoming class that is geared toward helping parents understand the cranial sacral "rhythms" and helping them to continue therapy with their kids at home. I'll keep you posted!
