Sunday, October 27, 2013

Snapshot

On Saturday morning, I took Ronin and Keira to the rec center to swim. In the parking lot, an elderly gentleman looked after us fondly and guessed aloud, "About 3 months?"

"Thirteen, actually," I called as I kept walking, ignoring the surprised look I'm getting accustomed to.

In the kiddie pool, a precocious little girl, probably 5 or 6, approached K and me and asked, "Is your baby pretending to be dead?"

I smiled and said, "Sort of. She's kind of overwhelmed with all the noise in here, so she closes her eyes." The girl seemed curious and hung around for  a bit.

"You're really lucky," she said. "My aunt just had a baby and her legs are crooked."

"That's too bad," I said. I wasn't sure what to say next. I thought I could tell her more about Keira. I'm always eager to teach kids a thing or two about special needs, but  I didn't want to sound like I was competing for the saddest story.

After a minute I decided on, "Actually, we're not sure whether our baby will ever be able to walk. She was pretty sick when she was born."

"Really?" the little girl said. "You mean she couldn't walk in the water like this?" as she demonstrated.

"Maybe not, but we'll love her all the same." At that moment, Ronin tromped over and taking Keira's hands, moving them vigorously, he proudly made her open her eyes and laugh like he'd just woken sleeping beauty.

***

So, maybe I won't feel this way next week, or maybe not even tomorrow, but right now I'm thinking that this all gets easier to swallow as Keira gets older. We still don't know whether she'll walk or whether she'll talk or whether she'll eat solid foods. But we do know, without a doubt, that she is, and will be, very delayed. When she was a newborn, and for that first year, it was always a question. We watched and compared her to the same-aged babies, wondering if and hoping that she was going to defy the odds and move ahead faster than we could have guessed. We watched, sometimes painfully, as those other babies rolled over, sat up, crawled, and walked. Now, as sad as it may sound, that faint hope that everything might be okay, in the typical sense of the word "okay," that glimmer has burned out. The surprising thing is that it feels easier to breathe. I see her next to the other 13-month-olds now and it's no comparison. They're bigger. They're walking. They're talking. It's no comparison. K is who she is and we love her. We'll take any development we can get in her timing. But she's okay. We're okay. She's happy. We're happy. 


Sunday, October 13, 2013

She’s So Organized


It’s during these times that thoughts return that have been so rare these days….that maybe someday she’ll actually be walking and talking. When I say she’s organized, it’s not that she’s organizing her sock drawer by color or using a label maker for her toy bins (although, we’re working on that). Her breathing is regular. Her eyes are open and looking straight forward. Her hands are relaxed. She laughs readily, these heartfelt, contagious laughs. She eats more.

Being sensorily organized or being regulated is really not something that I understood before getting to know Keira. I had heard of it a lot because I work with OTs and I work with a lot of kids with special needs who mention being “disorganized” or “disregulated.” It seemed like the funniest term and, not really understanding what it meant, I stayed away from that subject.

Here is the best way that I can think of to describe it: Think about the difference between a day when you are tired, forgetful, and having trouble concentrating. Or you feel jittery because you’ve had too much coffee. Or your head is congested and it feels like you’re “in a fog.” Or you just don’t quite feel quite like yourself. You can usually still do what you need to do, but you feel less efficient and kind of out of it. Consider the difference between that and the days when you feel that you are running on all cylinders and things are going great for us and you’re sharp and quick witted and you’ve got a solution for everything. That’s being “organized.”

Maybe you can understand it more easily in terms of a baby. When a baby is hungry, she cries. You’ll be hard pressed to get the baby to focus on anything else until she is fed. When she is hungry, she is disorganized and needs to be satiated in order to be organized again. But with a kid like Keira, the disruption can happen with so many things besides hunger and it can be so much more disruptive. She might be face to face with someone she’s never seen before. Maybe someone opens a soda can next to her. She could be getting weird messages from her brain and it just causes her to be less present. She might not be crying like she’s hungry but her hands are clenched, her toes are splayed, her eyes are closed, she’s breathing fast, she’s not eating, etc.






















What exactly causes the fluctuations in her ability to regulate herself? It’s hard to know. It’s the
organization of all of these invisible processes in the body. If you talk to anyone who does acupuncture or massage or Eastern medicine, he/she may have more insight into this type of thing than most of us do. The concept of the body’s multiple “energies” is so foreign to me. In America we tend to want scientific “proof,” visible cause effect. But I’m being challenged on that. The woo woo therapist that I see puts her hands on K’s head and on any given day tells me whether Keira seems organized or whether her “rhythms” are easy to detect. Rhythms? What does that mean? Her blood flow? Heart rate? Oxygen saturation? Level of alertness/fatigue? I don’t know what it is that Ms. Woo is feeling or not feeling.

What I do know is that I have bought in to the idea that there are days K is organized and days that she is not. And on the days that she is organized, she is so much more present with us, so much more active, and makes gains so much more quickly. There is a lot of hope and optimism to be had on these days! Her most recent period prompted me to start trying to capture the normal baby stuff that she does when she’s feeling really well. Check out the “Typical Baby Stuff” tab at the top of my blog. 

She Makes Me Special


Dare I say it’s fun sometimes to visit with Keira’s specialists and other doctors. It’s like a game; a puzzle we’re solving and working on together to come up with ideas. I get taken seriously and I also get to pick the minds of these people and gain a better understanding of their expertise. But of course the very minute that I think that that’s fun, I’m feeling guilty because I’m on what I neurotically think is a slippery slope to Munchhausen’s by Proxy (a psychological syndrome in which the parent fakes medical problems in his/her child in order to gain attention).

Let me catch you up on the last couple of weeks. Keira got a cold and one night we took her to the emergency room. Even the boys, I think, were expecting her to get admitted to the hospital. She was having some trouble breathing, but we were sent home after her oxygen saturations seemed to be good, her RSV swab was negative, and her x-ray showed no pneumonia. Wahoo! Who knew a trip to the ER could be so great? Great because 1) we knew the drill and weren’t too worried and 2) she got to come straight home!! It occurred to us that this breathing concern could happen every time Keira gets a cold, which could have us making a lot of ER visits in the future. To help with that, we’ve purchased a mini pulse oximiter for use at home.

As a side note, I have to tell you about the strangest contraption we discovered at the ER. In order to keep Keira upright and still during her chest x-ray, they put her in a Pigg-o-stat. The funniest invention. It looked like a cow shoot or some sort of torture device. K sat on a miniature bicycle seat and two translucent half cylanders were put around her in order to hold her arms up by her head. It was kind of funny and kind of sad at the same time, but she only had to be in it for about 20 seconds because they got a good pic on the first try!
This is not Keira. I wasn't that heartless. 
We’ve been to see the GI. Good news. He doesn’t think she needs a G-tube. Not now, anyway. Two of the major calorie-zappers in typical 13- month-olds are 1) brain usage and growth and 2) usage of major muscle groups (a.k.a. learning to walk). Since K is not very efficient at either, her body seems to be adapting to what it actually needs at this point. Just to be safe, he sent us for a swallow-study and we’ll be headed to an endocrinologist. The swallow study was to make sure that she isn’t “silently aspirating” her food. We did that procedure last week and results show that her food ends up exactly where it’s supposed to.

The endocrinologist will make sure that there’s no pituitary issue that is keeping her from growing taller. In discussing this possibility with the GI, he was sympathetic to the idea that even if we could induce more height growth in K, we might not want to as, in reality, we may be having to carry her around and maneuvering her for a very long time. Such a strange discussion to have. It reminded me, actually, of a story I heard about a family who had a profoundly disabled daughter. I don’t know how I feel about the title, but they called her a “pillow angel,” because realistically, all she could do was lie on the couch and look pretty. She lived a long time and the parents opted to have a hysterectomy performed on their daughter. This prevented her from having breasts, periods, or the risk of getting pregnant if, God forbid, she was ever taken advantage of. The surgery made her care easier, but sparked a huge controversy in the medical community. As a result, surgeries of this manner are now outlawed in several states. I understand the ethical concerns here, but I also think that what's best for the child sometimes comes down to what's best for helping the parents cope. Food for thought.

We’ve asked around and made some decisions about positioning devices as well. We were advised by one trusted therapist to wait on wheelchairs until we cannot feasibly move Keira around all the time anymore, which may be years from now. She said that once people get put in wheelchairs, they start to look like their wheelchairs because that is the only place they ever sit. Even in bed, sleeping, their bodies are shaped like they are in the chair. For now, she has the floor, the couch, her car seat, a bouncy seat, her beanbag chair, etc. For now, the overpriced "tumble form" can suck it. In a third attempt to keep Keira from always looking to her extreme right, my mom has sewn a mini U-shaped pillow, like the kind you buy at the airport. I think it’s helping and at least it makes me feel better about sitting her in some chairs that aren’t suited just right for her.

And her eyes. Since Keira got over her last cold, she seems to be in a place of real growth. She’s super “organized,” which, as far as her vision is concerned, means that we catch her looking to her left. We’ve seen her sucking on her left hand, and she looks at us more often with both eyes together. Jeff even caught her looking up at the ceiling fan the other day, which is much further away than she typically tends to focus. We are optimistic that as these periods of organization get longer and longer, her vision, and maybe other stuff too, will become more and more functional.