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.