Awkward Silences, Publicity, and Other Stuff

It's been a whole month since I posted! It's a victory, of sorts, to me, because I realize that my blogs often grow out of concerns and heaviness that weighs on me. For the most part, things have seemed as they should be over the past few weeks and we're just carrying on with the busy holiday season. Like you do....

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!

All By Myself

So, I’ve always liked to be independent. Having Keira has taught me a lot about how to rely on others, but I’ve got to say that having my mom away for the week has been a little bit exhilarating. I was a little impressed with myself regarding how much I was able to do….all by myself.

I did 90% of the dishes (though we ate out 60% of the time).I did 100% of the laundry (even folded 10%).I worked at the office for half a day (instead of 2).K was sick and so was I. But we managed.
We attended to appointments for Keira (a slow week). I vacuumed (upstairs).I took out the trash (and even brought the trash cans back in).I made the kids a special Halloween breakfast and took them trick or treating.I mostly kept my cool (I only yelled at the kids a couple more times than usual)

Wow, that didn’t end up looking much like a brag sheet did it? It’s true, I can get by on my own, but it’s a heck of a lot better having an assistant. I’m sure Jeff would second that. I hung in there this week, but Jeff didn’t get much attention. When he darkened the doorway, it was pretty much, “You’re home! Goodnight.” 

All that aside, having Mom away reiterated to me what I already knew. Having her keeping me and K company most days saves me from myself. Spending hours and hours home alone with K is hard for me. Maybe it would get better over time, but I felt this week like I was bathing in the fact that she can’t do much. She’s not progressing very much. And there’s not much I can do about it.Wednesday was a particularly hard day when the therapist seemed to rub salt in that fact. 

She started out with, “What progress has she made since I last saw her?” Uhhh….

Then she asked me to bring her a toy to motivate K to lift up her head. Umm….(Later, I thought causticly, “What can I put in front of you to make you sprout wings?”)

Then she told K, “You need to do some of the work. I don’t want to have to hold you up like a rag doll.” Sigh.

I feel like this particular therapist is losing hope and doesn’t know what more to do for K. That’s depressing. 

But that wasn’t all. Then she told me that she wants to make sure we keep in touch, even after she isn’t working with K anymore. She proceeded to tell me that she recently found out that one of her former clients had died. She should have stopped talking. Then she tells me this client was 5. She couldn’t walk or talk or do anything for herself, but man did she have personality. Man was she happy. “But it’s probably for the best so she doesn’t have to suffer anymore.” 

Seriously? You’re going to say that to me?

And then. And then. Yah, there’s more. Then, she starts telling me about how I need to register for another program that will provide funds for additional services and equipment. I told her I decided I didn’t want to do that yet. She kept going. 

Relayed message: “Bekah, you should be doing more for Keira. You aren’t doing enough!” Of course, she didn’t say that. She probably didn’t even mean it. Probably she’s trying to be helpful and is grasping at straws cause she’s at a loss. I know all that. But it still sucked.

Mom, I’m glad you’re headed home. Thanks for all you do for us. 

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. 

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.

Accommodating

I was asked recently whether we were starting to get a system down when it came to doctor and therapy visits. They wondered whether we'd been able to figure out which specialities and appointments were helpful and which were more trouble than they were worth. It's such a good question, and though my answer at the time was, "Yes, we are figuring it out," there are so many moving parts that are always changing. For example:

1. Ophthalmology. Our sense is that Keira doesn't see well. She doesn't see very far from her face and her best fields of vision tend to be low and to the right. We have been taking her regularly to a pediatric ophthalmologist. They "test" her vision by seeing how she responds to light changes, large cards with black and white designs that are flashed in front of her face, and noisy wind up toys that are presented to her. These assessments are highly compromised due to her poor motor mobility at this point, so the doctor generally tells us only what we already know. However, we have been told that, if Keira's left eye continues to wander inward like it does, he could surgically alter the muscles of that eye to straighten it out. Hmmmm...

2. Gastroenterology. Keira has been hovering at a whopping 15 pounds for months now. Her height to weight ratio is good. She still has pudgy baby legs. But with only 12-15 ounces of food intake per day, she doesn't have a lot to work with. Sigh. So, we aren't in an emergency situation, but this scenario just isn't right. I don't even know how to answer the pediatrician's questions about this anymore because there are so many theories and moving parts. She takes Miralax to make sure that the waste isn't backing up and keeping her from eating. She takes Prilosec to keep her from spitting up after she eats. She takes fortified breast milk, high calorie formula, and/or this new (brown!) toddler formula that's delivered to us from Norco medical supply. She's also trying to learn to eat, so she's taking some solids. The PT thinks she may not be eating more because her hyoid and other mouth muscles are too tight. The OT thinks she might be too overwhelmed. Jeff and I wonder if her brain's ability to register hunger isn't good. A CMV Mommy suggested that her stomach may not be emptying properly. The pediatrician wants us to consider a G-tube.  In case you don't know, that's a tube that goes straight to her stomach, through her abdomen, that we would just pump full of partially-digested food at meal times.

It's gotten complicated, see. We're going to visit a GI specialist to explore our options. I know that a G tube is on the table, but I have weird feelings about it. It seems so unnatural to me. Not that  we aren't doing anything else that's unnatural, but there's just something about this particular intervention. It makes me wonder (albeit ever so fleetingly) if she's even supposed to be here if that's what it takes to keep her going.

3. Positioning systems. During PT last week, I was asking for ideas for how to keep Keira in proper alignment when she's left alone to play. I have strategies (read tube socks full of beans), but often find that her head still slumps to one side. This is problematic because we don't want K to develop scoliosis and back pain on top of everything else. The PT advised me to start researching positioning devices, including something called "Tumble Forms" and "Stroller Wheelchairs." Such devices, paid for by Medicaid, would become the place she would sit in the house during all downtime. They are adapted to suit kids for their particular needs. As something I've been curious about for a while now, I was excited when the PT said it was time to start looking into this stuff. The funny thing is, in spit of my excitement, I haven't yet. I guess I know that once we go down that road, there's no going back. Once we have a wheelchair in the house, we may always have a wheelchair in the house.

As these issues circle round and round in my head, I'm reminded of something a friend said to me a while back. The friend lives in Cambodia and said something to the effect of "I feel sorry for you for having to do this in America." I was puzzled by her comment, and asked her to tell me what she meant by that. She explained that in America there are so many expectations. Because there are so many options and so much science and so many specialties, a mom is expected to access every possible accommodation and intervention, which can be exhausting and can actually take the joy out of parenting.

Such an interesting perspective, I thought. And so true. We usually feel so lucky to live in the U.S. and have all of the latest and greatest available to us. Whereas in Cambodia, or elsewhere, you have your baby, you love your baby, and you do the best you can with what you've got. Period. So much less of this tightrope walk between the hope for more development and services and interventions on one side and acceptance, love, and resting in is on the other. I know that those things don't have to be mutually exclusive, but it isn't easy to hold them at the same time.

what

As it turns out, accommodations and interventions don't always seem so accommodating.

I know, right?