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.

An Invitation

If you read my blog, this invitation is for you. It is almost time for Keira's first birthday and we couldn't have done it without you. Please come. 

Weary

It’s been harder for me to sit down to write lately. I think I’m tired of hearing my own thoughts and maybe assume that you are tired of reading them. A good friend asked me how I was doing yesterday and I told him that “weary” is the best word that comes to mind. Most days I don’t feel bad. And most days I don’t feel great, either. Overall, Keira is great. She’s generally content and happy and sleeps well and is able to go places with the family. However, our days continue to be (and may always be)punctuated with doctors and therapists who point out what needs to be worked on which, I think, casts a shadow on my overall mood. We’re always striving and always working on the next thing and always aware of what she hasn’t accomplished yet. There seems to be this impossible tension between 1) accepting who Keira is and resting in that and obtaining a sense of normalcy and 2)continually focusing on her deficiencies in effort to help her to grow and be everything she can be. Being with Keira is easy. But thinking about all the other stuff is weighty and can’t be shaken off.

In therapy, refusing to lay on her tummy, she tried to hold herself on all fours!!

I recently heard about a woman whose severely disabled daughter died when she was 14 years old. When she passed away, the woman had no sense of who she was anymore because her whole life had been wrapped up in her. From the beginning, I’ve known that it’s important for me to continue to try to exercise the different parts of myself. However, I find that I’m often thinking about Keira when I’m not with her. I keep coming to work, even though I’m distracted. And this fall, I’ve decided to help out with choreography at our church’s Christmas pageant. I’ve also agreed to teach dance at the studio for one hour a week. I feel so grateful that I am wanted for these endeavors and I cherish the opportunity to continue to have dance in my life. However, I find that weeks before either is to start, I’m anxious and worried about how much time and energy these projects will take from my family and me.

Keira’s tube surgery went fine. However, 4 days later I was struggling to get her to eat. She seemed to regress to a phase she was in months ago. She could not coordinate her “suck, swallow, breath” pattern for eating and when she got too much milk in her mouth, she gagged and aspirated milk and couldn’t cough! She was breathing rapidly and keeping her eyes closed. After 24 hours of this, I was sure I’d be hospitalizing her for dehydration, but we limped through another half day, giving her milk a teaspoon at a time. And then all of a sudden, she was fine. And, her first tooth had emerged from her gums. So, what we figure is that the combination of teething and perhaps surgery had set her back. Scary to think that she could regress so far so quickly, but reassuring that she snapped out of it so readily, too.

Many people were interested in my post a while back about getting appropriate gear and toys for Keira. You’ll be happy to know that since then, we’ve developed a couple of great tools. Her favorite new toy is a rattle constructed of a pill bottle with a couple of paper clips in it. It’s the perfect size for her to maneuver and it holds her thumb out the way it needs to be. Also, my dad put together a pipe/clamp doodad that we can hook onto furniture around where she’s laying and hang toys from it so that she has something close enough to her face to focus on. 

I've felt unable to focus on much of anything, so I've been spending a sickening amount of time on facebook and pinterest. For what it's worth, I came across a verse on pinterest today. Psalm 46.5: God is within her; she will not fail. 

What's new?

Keira is now 11 months old. We're gearing up for her first birthday party! Woohoo! As I drifted off to sleep the other night, I was dictating in my head a blog post for her first birthday. It was going to be something genuine and authentic and grand about how we went from feeling anguish about our sick little girl to pure delight and acceptance in just one year. The next morning I tried to remember what I was thinking of writing. Insert gagging gesture here. In hindsight, my mental rough draft was a little over-stated.

The truth is, we are doing well. As my mom said, she'd never be thankful that Keira has cCMV, but there are sure a number of wonderful things that have happened in our lives because of her. And I probably will take an opportunity to itemize some of those in a future post. I feel tremendous happiness and pride about Keira, yes, but I think that there is also a continuous undercurrent of dis-ease about her.

We've had a really fun summer. The boys have been growing and changing and maturing so much. The family seems a bit lopsided to me, though, with Keira still in the bouncy seat, content to be looking into the sunlight of the front window. She is developing, but it is so. slow. I am infinitely thankful to my mom for being Keira's best and most devoted therapist. In reality, I do very little, if any, specific therapy exercises with Keira at all. I think that's okay. I think I know myself well enough to know that if I put that on my to-do list, I would forever feel that I was behind and not doing enough for her. And if I did keep up with it, it would be really hard for me to not get discouraged by the pace of her responses. So, Mom does K's "exercises" with her about 5 days a week, sometimes twice. She is infinitely patient and notices even the smallest amounts of progress. Thank you, Mom.

At her last couple of appointments, Keira had lost weight. She's healthy, but she definitely shouldn't be losing weight. Honestly, she has eaten more or less the same amount of food since she was a couple of months old. So....the regime now includes me pumping milk every three hours around the clock, then feeding it to Keira via bottle with some formula added to increase the calories. It seems to be helping. I'm sure sick of my dates with the electric pump, but I think I will be sad to finally give it up. Providing breast milk seems like the one sure thing that I can provide for her. All the science in the world has not been able to create formula that duplicates the brain-growing capacity of breast milk. I'm hanging in there for what it's worth.

Keira takes Prilosec, or something like it, once a day before she eats in order to make sure that she is able to keep her food down. With all the formula we've added, she now has to take Miralax once a day, to make sure that everything comes out the direction regularly. I'm not real comfortable with this. Giving her medication to make her food go where it needs to seems unnatural, at best. I remind myself to be thankful that she does not have a G tube.

I was recently accepted to be part of a Facebook group called CMV Mommies. And just like that, I had instant contact with about 700 families with CMV-infected kids from around the world. This felt very reassuring, but within a couple of days I was "hiding" some of the contacts (No offense, CMV Mommies). I wasn't ready, after all, for the barrage of status updates that included seizures and hospitalizations and deaths and G tubes, etc etc etc.

Keira is getting tubes placed in her ears again tomorrow morning. At her last ENT/audiology checkup, her hearing was not good. Doctors want to re-place her tubes, in the hopes that her hearing will return to normal. They are hopeful that there is just fluid and gunk in there that will resolve when the tubes are re-inserted. I sure hope they are right. As I told the doctor, I was under the impression that, by some stroke of luck, Keira's hearing was her most reliable sensory input. I'd just assume act aggressively to make sure that this continues to be the case. Our ID specialist thought we were pretty much out of the woods when it came to progressive hearing loss, but who knows, really?

K has been having a lot of fun with her brothers, who can reliably cheer her up in the car or for a few minutes while I finish the dishes, for example. She is still smiley and happy, particularly with Dad. Though she tends to not eat well when we are out and about, Keira does pretty well in new situations and makes up for her food intake after we get home. Keira has been getting to know her great aunt Joy this month and, if we are lucky, will be seeing a lot more of her around here soon. Keira's getting her last hugs and kisses in with aunt Steph, who will soon be available only by Skype for about a year. My new baby carrier came in the mail and yippee! It works great. Keira is eating baby food and doing some great chewing motions with her mouth. She seems to like apricots and sweet potatoes and Grandma Janie's refried beans. She was so sure about the pickle from Frahm Farms.

I love that Keira is so loved. And that you guys like to read this and know what she is up to. Thanks for hanging in there with us.