Photo Session

It's true what they say. You take fewer pictures with each passing child. I've been trying, really trying to take more pictures of Keira. Because she can't sit up, there are limited ways to photograph her. She also tends to know, somehow, when I'm trying to take her picture and she gets less happy. I tried another photo shoot this afternoon. She tolerated me.

This is before she noticed me. She's checking out her hands. This is good.

This is a look that says, "You're freaking me out." Clenched fists. A little too much of the whites of the eyes. But you can see her beautiful blue eyes and long lashes! If she had really had it with me, her eyes would be crossed and/or closed.

A little more calm. Just watching. 

So cute. This is her stance a lot of the time. We're trying to get her to loosen her fists more and the tuck her arms and legs up like a little bug, instead of extending all the way like this. Most of your babies at this age are sucking on their toes. 

Alternative Therapies

I'm not talking rapid eye movement or re-birthing or detox diets or crystals. But look: 

Deep Pressure Via Dog

Back Extension Via Oral Massage (This is Amy, our awesome OT)

Daddy Time

In all seriousness, Daddy does the weirdest stuff with K and she loves it. It's a pretty big deal, actually, that she can tolerate how crazily he plays. Surely, she's building abdominal strength with how hard she laughs with him. The other day, he told me she did some great back extensions when he held her up in the air with one hand. He's got her doing a mean Macarena. You should see it. He blows in her mouth (I know! Gross, right?) because she "likes it." Not sure what that is developing besides tolerance for the weird antics of the boys in the house. Now that I think about it, that's pretty essential.

Playing with Daddy...the only time I get a great photo. 

Keira had a great weekend. It started with a trip to the audiologist. She did great on the first half of the testing, but refused (fists clenched, eyes shut tight, but SO not sleeping) to do anything in the sound booth. No worries. Her hearing seems to be doing well. There didn't seem to be any major fallout from the stress of that morning. She took some naps on her own in her bed, was calm during car rides, and ate well. During the weekend, we also took her to the pool, to a potluck, and on a few other errands. This is progress! As Jeff says, she tends to have the pattern of two steps forward, one and a half steps back, two steps forward, etc etc. We're at that exciting point right now where we're moving forward. She's rebounded from the regression that she showed after a couple of stressful weekends (Sun Valley, then an overnight with Jeff and I to a hotel) and she's movin' on! Love this.

As usual, my moods and stamina vary tremendously. It tends to wax and wane depending on how Keira is doing. I'm pretty sure that it isn't about Keira, per se. I struggle with trying to figure out what Keira's patterns are. What overwhelms her? What soothes her? It's so inconsistent. So hard to predict. I feel confident that K is going to have the best life we can provide for her regardless of her skills. I continue to struggle, selfishly it feels, to wrap my head around what that means for my person and my life. Like most of us, I like to have control and my lack of it challenges me every day.

Vera and Evie

My heart is heavy for my friend Vera in Denver, and her daughter, Evie, who is still in the NICU. Things aren't going well. Evie did not respond to the medication that helped Keira. They are trying to just wait it out at this point, but the CMV seems to be getting worse. Poor baby. Your thoughts and prayers would be appreciated.

Sensory Overload Overload

I'm sitting in Boise waiting for "A Very Important Sensory Conference" to start. I decided to come as a double whammy- CEU's and some possible ideas for helping Keira. However, on this particular morning, I'm wondering what I was thinking. Frankly, I'm tired of thinking about sensory stuff. So nebulous and elusive. Such a moving target. My mom and I spend so much energy trying to help regulate K's functioning, but this stuff is so foreign to me, I often come up for air and wonder if we are chasing unicorns. Would we do just as well to mix up a magic potion? We joke that some of the therapists are simply "rearranging her energies." But...I guess that's sort of what we're going for. It's like we're trying to learn to speak Oompa Loompa when I'm not sure I believe in Oompa Loompas. As a therapist, I roll my eyes about it all. As a mom, I'd do anything to help my kid. 

It seems to help (Although I'm oh-so-aware of the placebo effect, response bias, and confirmation bias...). When K is having a hard time going to sleep because she's startling every 5 seconds, the weighted blanket and deep pressure seem to help. When she is quick to become fussy in public, the noise-dampening headphones seem to make a difference. She doesn't want to extend her neck, but a massage if her gums is enough to motivate her. I'm not going to lie...my mom is the one doing most of the therapy with her. K was asleep most of the time that Mom was over yesterday, thereby having less sensory work. Then K didn't sleep well last night. Coincidence? 

It's easy to ignore K's sensory needs. The signs are stealth and covert. On Wednesday, I took K out more than usual. I consoled her fussiness through the errands just as I would have with the boys. The effect was that K's mouth and tongue got tighter and tighter until her eating got much less efficient and by the end of the night she was hacking and gagging the way she did before she was hospitalized in February. Yikes. 

So...I'm leaning toward believing in sensory regulation and it blows my mind that I learned nothing of it in graduate school. And I am prone to hate it...because it's hard to measure, time consuming, and exhausting. Thank you, Mom! 

My parents are saints. They have re-arranged their lives to help Keira and perhaps more so to prevent me from caving in. Sometimes lately I fret that they are enabling me now...I'm used to having my laundry folded and Keira's therapy done, so I have little impetus to pick that up on my own. Jeff says that's not necessarily a bad thing. I didn't mean to take over their lives. 

The last couple of weeks have been rough. I can't keep my mood and energy up consistently. I'm often tired and feel like making a phone call is too taxing. Whereas Jeff and I seem to typically take turns having worn down times- subconsciously compensating for each other- we've both been out of it lately. Yikes. 

I've found myself a little Facebook-obsessed with other peoples' tragedy this week. An old friend who was recently in a terrible accident. An acquaintance who had a baby who may have a genetic disorder. Vera and Evie. I suppose I want to know how they're getting along..affirmation that we're doing ok. I recently heard a saying that the best cure for sadness is to hear about other peoples' sadness. 

Liam about broke my heart the other day. He said to me, "I can't wait til Keira gets bigger so I can take care of her!" If he only knew.. . At Wendy's the other night, we were sitting near a cute 9-month-old who was seated in a high chair, waving, and eating French fries. I refrained from pointing out to Liam the differences between that baby and his sister. Jeff, the wise old sage that he is, reminded me that Liam may have the blessing of never being sad about his sister. 

Things to look forward to: Jeff and I are going away for a night this weekend (taking K with us) to celebrate our 12th anniversary. Thanks for the deal, Pat! In July, we're taking the kids to the Oregon coast for a few days. Thanks for the deal, Mary! 

I'm on a mission to get some cute pics of K soon. She's so hard to photograph! 

8 Months

Keira at 8 months...15 lbs.

Ronin at 8 months...19 lbs.

Liam at 8 months...19 lbs.

Keira will be 8 months old tomorrow. At 8 months, the boys were sitting up on their own, crawling, pulling up to stand, and eating some baby food. Keira, on a timeline of her own, is continuing to learn how to self regulate. She is making new sounds. She's trying to roll over from her back to her stomach. And she's still (still) working on holding her head up. I grow weary of working on the same skills over and over. However, her therapists are excellent cheerleaders and insist from week to week that they see improvements. And my mom, her best therapist, is infinitely patient and could probably tell you another dozen or so minute  things that Keira has been doing recently.

Keira went with Jeff and me to Sun Valley this past weekend for a conference. It was nice to get away and my mom came, too, to watch the baby. It was a very worthwhile weekend, but when I returned I was wiped. out. I bailed on work Monday and most of Tuesday and slept a lot. Everything felt too hard. Thank goodness I feel better today. Frankly, I'm a little surprised that I feel better today. Unfortunately, every time my body lets down a little, I start to panic, thinking, "Oh no. This must be when I'm really gonna lose it." I'm stronger than I think I am, apparently.

All in all, things are going well with K. Life feels pretty stable in spite of her unpredictability. Unpredictable, for example, in terms of how settled she will be on any given day and how much attention she needs. Unpredictable in terms of how well she can coordinate her mouth and eat efficiently. Today she couldn't stay asleep on her own for more than a few seconds before she would startle herself awake. Not sure what's causing that...Like I said, I grow weary of the fact that we are still working on head and torso control, but little by little...When I'm anxious, I worry about how we are going to carry her around when she's much bigger and still can't maneuver herself. I also get eager for our next ophthalmology appointment. I'm over thinking it's sad for my baby to have glasses and hope that they would have the effect of drawing her out a bit more.

Keira's favorite therapeutic activities lately are 1) dancing with Grandma and 2) having her mouth massaged. We've been told to do all kinds of patting, pinching and rubbing of K's lips and gums in order to wake up the muscles and get them ready for eating (eventually). It seems like the most obnoxious thing, really, but she loves to have someone's fingers in her mouth!

One of my favorite things about Keira is very much the same as her brothers at 8 months. When Daddy comes home, she glows. Daddy consistently gets smiles and laughter out of his girl more than anybody else does. And what does any parent want more than for their kid to be happy?

Keira with her "boxing gloves" discovering her own hand. The gloves help hold her thumbs out in a neutral position. 

I also love that the boys are getting better at comforting Keira when she's upset.  And they love to show her off to the neighborhood kids. Liam proudly wore his Team Keira t-shirt to school the other day. The following day, one of his friends asked me "How's her disease doing?" Apparently, Liam is finding his own way to to tell his sister's story. So proud of him. Ronin makes up little songs like, "Don't whine, Keira, don't whine. God is gonna help you. I don't know how He's gonna help you, but is going to..."

Our weeks at this point are fairly routine. Much of each day is with Grandma Sharyn, but she also has regular visits from Aunt Steph, Grama Joy, and Anna. OT and PT every week. Woo woo every other week. Actually, we're headed to woo woo tomorrow. I'm a believer now. One of the best things she does is work on Keira's sphenoid bone. Never heard of it? Me neither. But it's for real. K's eyes typically coordinate quite a bit better for a few days following this therapy.