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?

Daddy's Girl

Jeff and Keira really do have a special connection. He makes her laugh like no other. I know she knows his voice and she is so smitten with him. Their bond comes as a relief to me. If it had been this way with Liam, my first baby, it probably would have left me feeling really insecure. Not that Jeff and I don't share the blessings and burdens of parenting equally, I tend to be the one the boys come to for comfort. With Keira, and all of the unfamiliar needs that she has, I'm so glad that at the end of the day, Daddy can swoop in and be a more than satisfying presence for her.

Jeff invented a game called "Strong Bear." (He calls her "Bear," which is derived from "Keira Bear," which we thought was cute early on, because it sounds like our old pals, the "Care Bears.") Keira sits in Jeff's lap and he holds her around the waist, which means that she's slumped over like those sad old grandmas you see around sometimes who have hunched shoulders and can't seem to look up from the ground. Jeff then prods and cajoles and makes silly noises at her until, with all her brute force, Keira's head pulls up, up, up, then crashes back so she's looking at the ceiling. I used to hate this game, or at least I couldn't watch it. But, lo and behold, K seems to like it. She tends to talk loudly to him during the game and wouldn't you know, she's much less slumped over than she used to be. Her head is also doing a lot less crashing from one extreme to the other. She's getting more control, little by little.

Keira was a little fussy the other night. Jeff was at a PTA meeting and I put her to bed. She'd been crying without ceasing for quite some time, for no known reason, and I finally picked her up and rocked her. Jeff came home soon after. Her face brightens and the mere sound of his voice and after holding her and playing with her for about 3.5 minutes, he put her back in bed. She went straight to sleep. Not a peep. She knew her day wasn't done without some daddy time. Precious.

Birthday Brunch

A huge thank you to all of you who attended Keira's birthday party. It was a splendid morning. We had over 40 people through our home and many others expressed regrets that they couldn't make it.

We celebrate first birthdays these days not, in my opinion, for the baby so much as the parents. It's more of a we-survived-12-months-of-diapers-sleepless-nights-and-new-responsibilities party. For Keira it's no different. And maybe even more so, in this case, a celebration for me. I made it. I'm doing this. I've incorporated this new, strange, scary thing into my life. The feeling is somewhat akin, on the good days, to how I felt when I first took off on a two-wheeled bicycle all by myself. So, yes, it's about me, but I feel so much gratitude to you. I sincerely feel that the reason I have come through with my self and life intact as it is is you. So, happy birthday to Keira. Happy birthday to me. Happy birthday to you.

Okay. I know what you really want. Here are the photos. If, perhaps, the theme escaped you, it was a "Keep on Dancing" theme.

The table was the main decoration (Jeff was impressed that I threw a party with a theme, but didn't go into so much detail that I couldn't enjoy myself. Progress!) A tutu tablecloth, pink donuts, yogurt parfaits, roses, and a slideshow of some of K's best pics from her first year. And the best part....

The photo opportunity. I painted this! Isn't it fun? These photos were the guestbook of sorts, although I did miss a few people. Thanks for being good sports. Dancers, I mean. 

As you can see, Keira was passed around a lot. She did really well, though, except for the not eating all day part. But she mostly made up for it the next day. We were so glad Aunt Shelly, from Nashville, was able to be at the  party. My only regret is that we never got around to lighting a candle, singing, and letting Keira "eat cake." Oh, well. One of the more memorable moments was when Jeff passed around the video of Keira "twerking." It's pretty funny, I have to say. And follows in the footsteps of her brothers, who "dropped it like it was hot", if you remember the move, when they were infants. I don't think I can get away with posting that video here, but next time you run into Jeff...

Keira has (I have) a few favorite gifts from the celebration. First, my mom made the sweetest little dancer dress to go with K's ballet shoes. Then an old friend contacted me on Keira's actual birthday and asked if she could take Keira's portrait as a gift. Ummm....yes!

To be honest, I was doubtful that she could get any good shots. K isn't easy to take pictures of. But I LOVE these! If you ever need family/kid pictures taken, I can hook you up!

Next, Keira's OT gave her a Nuk brush, that just happened to be during her birthday week. This is awesome. Keira still loves to have her gums rubbed, but she has one very sharp tooth, now, so sticking my fingers in there is dangerous! Also, we learned that teething can be more difficult for kids like K because most kids her age are breaking down their gums by eating solids and she, well, isn't. So, this helps with that. 

Keira has had a lot of cute headbands, but she's never worn them. Usually I just think they look ridiculously huge on her microcephalic noggin. But this one came in a gift bag from a friend. I love it. Kind of makes me think of an old blues singer, like Billie Holiday. Plus, Keira smiled so big when I put it on her. Jeff joked that perhaps it's like sustained cranial sacral ("woo woo") therapy. 

This toy is awesome. Anything that coaxes Keira into looking straight ahead, rather than all the way over her right shoulder, is a score. Better yet, this number attaches to everything...her car seat, high chair, etc. 

Finally, an old friend whom I hadn't spoken to in a couple of years happened to stumble across my blog recently. She read it from beginning to end and, taking special note of my rant about toys for kids with special needs, she brought us this: 

So wonderfully thoughtful.

In sum, Saturday was the perfect way to conclude one hell of a year. I am feeling hopeful as we embark on this new chapter of our family's story. Stay tuned!

The First Year in Retrospect

On the eve of her birthday, this is what stands out to me as I look back:

·       -Sitting alone in my hospital room after Keira’s birth. Being robbed of some of those first moments that you typically have with your baby: nursing, photos, introducing them to their siblings.

·       -The agony that I felt when, during those first few days, I  considered the life ahead. There was somehow an impossible, beautiful, clarity and purity in that emotion.

·       -I often felt like I was in the Twilight Zone. Out in public, people acted like it was a normal day and life just went one. It was everything but a normal day to me. 

·     -Loneliness. People are amazingly supportive but struggle to know what to say to us. Often, they say nothing at all.  One friend said to Jeff, “I about shit my pants when I heard there was brain damage.” Who’d have guessed that I’d appreciate this candid response more than any others? It validated what was happening and what I was feeling.

·       -Peace.

·       -The profundity of the experience overall. The closeness it brought to my marriage. The meaning and perspective that it brought to relationships and activities. The people that it brought into our lives and the things that it has prompted them to share with us.

·       -The surreal experience I had when viewing her MRI for the first time. 

·       -Having Keira in the PICU and thinking during part of that time that we could possibly lose her. Also knowing that we would be okay. 

·       -Keira’s laughter, which we heard for the first time promptly after being discharged from the ICU.

·       -The tremendous power of the community that came together for our sake. Friends and family, acquaintances, neighbors, and people we didn't know at all. We had company, meals, conversation, coffee, child care, chauffeurs, money, prayers, coverage at work, house cleaners, lawn mowers,  walkers for the March of Dimes, a photographer, shoppers, and more. 

·       -Not losing the baby weight.

·       -Having a desperate desire for Keira to be known, which resulted in me starting this blog.

·       -Vera and Evie.

·       -Jeff forever feeling okay about it all, then one day announcing that a friend needed to “stop posting pictures of their [exceedingly cute and typically developing] damn baby every 5 minutes!”

·       -The beautiful love that Liam and Ronin have for their sister and the pride they have when they make her smile. 

     Here's a picture of our sweet baby. Thanks for an unforgettable year. Hope to see you at the party!

If for nothing else

"If for nothing else than to be a symbol of hope that she will someday even stand." That's what Jeff said before he gave me the go ahead to buy a ridiculously priced pair of authentic ballet shoes for my birthday girl. I love him. And I love these shoes. Aren't they cute? They are the real deal...the leather and the bow and the pleats underneath. Since Bloch is the only dance shoe company that makes "pre-walker" dance shoes, I suppose they can charge three times the price of an adult pair if they want.

K is doing really well. She's getting stronger faster. She's holding up her head a lot more. The highlight of my week this week (besides the shoes), was spending a morning alone with her at home. She cooed and laughed for no reason at all. We went for a bike ride. She was in my carrier, tied to my chest, and she kept pushing back so that her head was hanging out. Her hair blowing, eyes closed, and a huge smile, she was really enjoying herself. She was like Meg Ryan in City of Angels, when she's blissfully riding her bike no-handed at the end of the movie (Except for the getting hit by a truck part).

I've been adding whipping cream to Keira's milk, so hopefully she will have gained a little weight by the next time we go to the doctor.

Keira can hear! She had her tubes replaced a few weeks back and the auditory tests done last week were very very good! We've learned that she is still a high risk for hearing loss, but the fact that she hasn't lost any so far is a really hopeful thing.

Keira has an ophthalmology appointment on Wednesday. Hopefully he can tell us a thing or two about her vision, but I'm not banking on it. It's pretty clear to us that Keira sees best in her right and lower fields of vision and that she is able to team her eyes best when she is very comfortable and content.

She has just been so so happy this week. She seems to enjoy her therapy appointments, her Beach Boys therapy music, and laughing at her brothers and neighbors. Steph and K had a "jam" that I've been singing to her in Steph's place. I swear she recognizes the song cause she smiles every time..."You've gotta keep your head up. Woah. And you can let your hair down. Yea. I know it's hard..."

We took K to our company BBQ last night and, aside from not eating or napping during the 5 hours we were there, she did awesome. One of my favorite parts was seeing how Penny, our friends' 3 year old who has Downs Syndrome, interacts with Keira. She is so sweet and gentle and loves looking after her. A new colleague said to me that she wasn't sure who Keira's parents were because she kept seeing the baby being held so lovingly by so many different people. That comment melted my heart. That's exactly what I want for Keira: lots of people to know her and love her. It's kind of funny when I think about it. With any other kid, I'd think it was superficial and tacky, to say the least, to want their kid to win a popularity contest. But that's exactly what I want for Keira. I think for people to love her will ensure that she is always taken care of. And beyond that, I know that people can learn a lot about the truest things in life by having the opportunity to know someone like her.