How Are You?

So much has been happening. And there is so much to get you all caught up on. I love you all and am so thankful that you are in my corner but blogging has been the last thing on my list lately. So, what I'm about to post is simply my response, via text, to a friend who asked how I was doing. It's honest. I'll tack some pictures on to lighten the mood a bit. Please keep praying for us. Thank you, in advance, for hanging in there with us.

Surviving. Just did sleep study and EEG and started a new therapy program and trying to get Medicaid to continue to pay for her other therapies while she has this therapy, and a new med and looking for a wheelchair van and starting to look into finding a one story house and bilateral hip surgery in a couple of weeks and babysitters are getting a life and are not so much available to us anymore and, oh yea, a husband and two boys who still need/want/deserve attention but I just want to pull the covers over my head because even answering the stupid phone feels like too much work. 

Sleep study...

I'm a good sport. 

Merry, Merry, Merry, Merry Christmas

merry synonyms:

cheerful, cheery, in high spirits, high-spirited, bright, sunny, smiling, lighthearted, buoyant, lively, carefree, without a care in the world, joyful, joyous, jolly, convivial, festive, mirthful, gleeful, happy, glad, laughing

Our holidays were truly unbelievable. Truly. 

Here is a picure I took of K on December 23rd. In my head, it meant, "Here goes nothing. This may be the last you see of me with a smile for a while."

Bring on the Christmas mayhem 

Boy was I wrong. And I couldn't be more pleased. The festivities started with a dinner party with friends on the 23rd and kept going and going and going. Not only did Keira attend every party, 

Anything for Daddy

not only did she stay relaxed through every get together,

Christmas dress

not only did Keira ENJOY every family gathering, 

Look what I can do, Grama!

she showed off all of her skills and her effervescence AND continued on each and every day. 

Eating chili. You know, like you do. 

Every evening, I thought, "wow, she's really gone all out today. Tomorrow will be the day she starts to regress." And every day I was wrong. 

Presents! Her favorites were Grandma Janie's bells and the big pink wagon (though she doesn't know it yet) from Grandma Sharyn and Grandpa Ron

Look closer. She's in there. 

This felt like such a gift. Such a wonderful gift. It's only by luck of the draw, it seems, that we had such an epic holiday with friends and family. As I follow my Facebook CMV community, one of our friends was hospitalized on Christmas for RSV. Another died the day after Christmas (presumably due to an infection in her brain that was secondary to her choclear implants). I believe that it just as easily could have been Keira. 

I feel so overwhelmed. So blessed. I'm a little embarrassed, actually, to explain to you the fullness of this Christmas, but in order for you to understand its awesomeness, I will divulge a couple of secrets:

First, Uncle Dan presented us with a book (A book!) that he wrote this year about the kids. It is a wild and adventurous fantasy tale about Liam and Ronin and their search for Keira's "happy." Dan is quite the author and hopes to publish this book one day. And don't you worry, I'll keep you posted about that. The dedication reads, "To Jeff and Bekah for their steadfast faith within their own unexpected journey. To Liam ad Ronin who are more than heroes; they are brothers. To Keira, who unknowingly inspired this book, and transpired the thoughts, minds, and lives of so many." We love you, Dan. 

Second, the DEA (Drug Enforcement Administration) of the State of Tennessee (Yes, the STATE of Tennessee) adopted our family for Christmas. Amidst several very thoughtful, very nice gifts (the boys love their Predators shirts and proved at a post-Christmas ice-skating venture that ice hockey may not be as easy as it looks), they provided us with the opportunity to have Keira's portrait taken. As many of you may disagree, given the volume of photos I post on Facebook, K is pretty tough to take good pictures of. 

One story...As I talked with the photographer about ideas for photographs, she kept being pretty pushy about this vision she had of putting Keira in this fluffy, colored tutu for a particular "look." You might be surprised, given the title of this blog and all, but I was skeptical, thinking that the tutu thing is kind of overdone these days, and worrying that K may just look like an overgrown newborn. For whatever reason, I reluctantly caved, bought Keira a little black leotard and took it along to the "shoot." Oh. My. Gosh. Like every stereotype you hear about little girls, she just ate it up! We started the shoot with a few photos in a regular outfit (sweatshirt and leggings, #leggingsforlife) but when I put the tutu on her, she knew! She smiled. And she laughed. And she kicked her legs. She worked it for the camera, I tell you. The pictures will be shared as soon as I have them in hand! We love you Shelly, et. al.! 

Jeff and I feel undeserving of all this attention. My heart feels so full that it could burst, thinking about how much love and support there is around us. I find so much gratification in the knowledge that Keira's life has touched so many people in so many different ways. That's all I wanted; all I wanted, when I first learned how sick she was. "Please love my baby," I begged the world silently. And just 2 years in, my wish has surely come true. Thank you all. 

Happy in the BRRR freezing cold doing the Hot Chocolate 5K

I've got to give a shout out to these two cuties. To Liam, who comes running from the next room when he hears Keira cry and who is so mature about all things Keira-related, and who's never, not even for a day, blamed Keira for taking away his parents' time. To Ronin, who runs in with Keira's special language learning toy every time he hears her start to talk and who will watch Annie with me and like it, even if he doesn't understand why they are singing. You two are amazing. I wish I could keep you in a jar.

Ro, Age 6almost7

Liam, Age 9 (#oldenoughforMagic)

Yes. In our minds 2014 was a tough year. But like any year, we put one foot in one foot in front of the other. We don't presume to be anything special (well, maybe Jeff does just a little). If anything sets us apart, I think, it's a belief in God; a faith that there is a bigger picture than we can see. We stumbled across a motto for ourselves this year: "Everything is going to be okay. Even if it isn't." We hope you can believe that to be true in your own life. Happy New Year. 

Effervescent

Keira is lovely. She's doing so well these last few weeks. Every day, I think of writing, and every day I resist. Not only is Keira doing great, I'm doing well, too. I feel more peaceful, more balanced, than I've felt in a very, very long time, if ever. I think the three-month forced time-out was really good for me. So, anyhow, I think I have a little bit of a fear that any minute, sh** will hit the fan again. I suppose I avoid writing, in part, due to a subversive superstition that the mere mention of how great things are going will tip the scales in the wrong direction.

In the past few months, I've "met" several mothers of children born with cCMV whose kids are about the same age as K. There's Nick, who I met at the conference in September, whose breathing/coughing/snoring sounds remarkably like Keira's. There's Rae, whose just had the double hip surgery that K will be having before long and whose smile looks so much like Keira's. And Elijah, whose plethera of adaptive equipment looks very similar to K's. It's nice to have these cursory connections to other families with similar kids.

Our "Bear"

One cCMV mom recently referred to her daughter as "effervescent." The word has stuck with me as a perfect description for Keira, so I'm stealing it. During these days and weeks that Keira is so happy, she is effervescent. It's like she has so much joy inside that it just bubbles out of her in sweet smiles and giggles. Her smile is infectious. It's hard to describe. People besides her immediate family talk about how her smile lights up a room and I don't think they are just trying to flatter me/her. It is just so pure and so sweet.

Man, I wish I could be a better predictor of what makes these good weeks turn into not-so-good weeks and back again, but I'll take it! When K is happy, she doesn't need to be held constantly and she accomplishes more in all of her therapies. Here's the latest:

Halloween

-K has a new chair that fits her really nicely and puts her in a great position to be able to hang out with me while I work in the kitchen.

-K is doing great things in feeding therapy. She is getting better at taking her bottle and experimenting with lots of table foods.

-She's working harder all the time at holding up her head. She really does seem stronger at this. When I carry her chest to chest, she often tries to hold her head up and look around and I can tell that she has more appropriate muscle tone because it doesn't feel so much like I might drop her.

-She's ON A DIET! Seriously. The last time I was really worried about her, she was sleeping a ton. I took her to the doctor and found out she'd had an enormous growth spurt- an inch and almost a pound in just a couple of weeks! The GI actually feels like her height to weight ratio is now OVERWEIGHT, so we've cut back on her nighttime feeds!

-She's actually met some goals. I hate the goal-setting part of therapy, but was so suprised when we did an annual review recently and came to find that she had actually completed two goals! She 1) has become much more able to tolerate being out and about with the family in environments like church, restaurants, and the rec center and 2) she is able to communicate yes and no.

Physical Therapy

-It seems to take a long time for a question or command to register in Keira's brain, but if we are patient, we are discovering, there is a lot she can do/communicate. A couple of examples: In speech therapy, within one session, K learned a video game! She had a large button to push, and each time, a piece of a puzzle would appear on a computer screen. After 6 pushes/pieces, the whole picture blinked and played music. Very impressive! At feeding therapy this week, we did some work with Keira's bottle. Not usually one for taking a bottle away from home, we didn't expect much. However, the therapist went ahead and attempt to have her suck the bottle, do some exercises, suck the bottle again, do exercises, which Keira complied with. On the third attempt at the bottle, Keira clearly made her "no" face, then reluctently went back to sucking the bottle, then turned her head to look squarely at the therapist in a manner that clearly said, "Is this what you want?" She is just so sweet and works so hard. Often, on the way home from feeding therapy, in particular, Keira laughs and talks to herself in the car as if she is so proud of all that she did that day.

We recently started speech therapy (which, coincidentally, puts us at one therapy appointment every day, Monday through Friday). The speech therapy is located in the same building as Jump Start, a local program for kids aged 3-6 who need intensive therapy. It's a group program that meets several hours a day, several days a week. It's well known as one of the best things around for kids with serious developmental concerns. Well, I haven't been real excited about the prospect of her actually becoming 3 and entering this program, but my mind was pretty much changed the first time we went to the building to attend speech therapy. Our appointment time happened to coincide with the start time for Jump Start. My mom and I were in the empty waiting room with K until suddenly, it began filling up with kids and their parents. It was the sweetest thing every. One by one, they filed in. A little girl with Downs Syndrome ran into the front room like she owned the place and promptly crawled up in the chair next to Keira to pet her. A boy using a gate trainer walked by, excited to tell his therapist about his most recent achievement. Another little boy, also appearing to have Downs Syndrome, walked in the front door and took a bow, then looked around, as if to say, "I have arrived and now the party can start." It was so fun to see this group of kids, each of them so excited to be there, so excited to be with eachother, and very ready to welcome Keira as well. I left feeling like this could be her place, too.

Watching "Elf"

I've been cleared by the cardiologist to do pretty much whatever I feel like doing. Though I still like to nap, I don't feel so ruled b

y the need to sleep as I did before. I'm trying to get back into an exercise routine, though that's still going pretty slowly. The good news is that I can hold and care for Keira without too much pain or fatigue. I've really enjoyed this last few weeks. I've spent time with the boys in their classrooms and have even done a couple of art projects with the students. I refrained from committing to the church's Christmas pageant and teaching dance this season. I miss both, of course, but I think it's been worth it to be able to be so available to Jeff and the kids. As they say, the kids are only young for so long and I can likely go back to those other things later.

Happy Holidays, Friends!

Everything is hard

It took a week for me to publish that last post. Namely because I was in the process of writing a very upbeat post about how well things seemed to be going when I began feeling much more frustrated and less optimistic all of a sudden. It happens. I wouldn't say that my life is necessarily a roller coaster, but it definately has unexpected ups and downs. So I finally finished up that last post, but now let me get you up to speed...

Keira really hasn't recovered completely from when Jeff and I were out of town. Her reflux is worse again. Or maybe she's just disregulated. Maybe she's out of sorts because she spends a lot less in time with me lately. Maybe she's having involuntary and painful muscle spasms. It's really hard to know. I felt helpless on my last phone call with the GI doctor. He asked me some simple questions like, "is it worse than it was initally after surgery?" And, at a loss, I confessed that I don't even know anymore. All of the information and patterns and cues seem to be muddled and I just don't know. He prescribed another medication, which seems minimally effective. The one very, very good thing is that K is almost always happy with Jeff and any discomfort she has is generally short-lived. I think it's due to the fact that 1) she just freaking loves him and 2) he's really rough with her, which, strangely, seems to help her organize herself.

So, digestion seems to be an issue. K often screams after being being fed. We decided to reintroduce the Baby Spanx (Theratogs) to see if it would help her digestion. They really do help with her movement, but it's a pain in the butt to put them on and take them off and pull them aside to burp her/feed her/change her diaper.

Keira has outgrown the cradle in her nursery. I have been working on getting her a "safety bed" or hospital bed so that she can have one bed for the rest of her life that will meet her needs. I've talked to 2 different therapists, 3 medical suppliers, 2 nurse reviewers, and a medical director, to try to pin down what information I need to have in order to be able to get a bed for Keira through Medicaid. The process has seriously been like a never-ending scavenger hunt that I don't want to play. I get completely conflicting information from one professional to the next. I had the "expert" tell me exactly what I needed to try for Keira before getting a hospital bed, only to find that the things she recommended DO NOT EXIST!! Grrr. Finally, Jeff and I decided to go to Babies R Us and buy Keira a crib. Quite a bit longer, this will last her for a couple of years, most likely, and we can continue to work on the hospital bed saga without the time pressure.

Keira's stander is probably her favorite therapeutic tool at this point. We love it. She's grown several inches since we got it, so we took it to PT with us last week to be adjusted to fit her better. The adjustment took the entire therapy hour and when we got home, we realized it wasn't quite right. It took my mom, Jeff, and myself over the next 2 days to get it right. It was the stander this week that made me think, "Could something related to Keira just be easy for once?"

Finally, Keira's visit with the orthopedist the other day was exactly what I'd feared. Her hips are looking worse and the doctor wants to do surgery on both. Even if K is never to walk, she needs the hips fixed in order to prevent pain, make movement and cleanliness easier, and to allow her to bear weight on her feet. Thankfully, the doctor agrees that we should wait and do surgery AFTER cold and flu season is over, so as not to put her at increased risk of, well, anything...

It's going to be good

I'm not feeling nearly as despondant about "2" as I was with my last post. Right after her birthday, as if to say, "Don't you dare doubt me, Mom!" Keira hit a pretty important milestone. She saw herself in the mirror and laughed! Just to test it out, I put a big, yellow flower in her hair and, to my disbelief, raised her LEFT hand, almost immediately, to to her head to explore the image she saw in the mirror.

It could be a good year after all. Keira is at an age where, for the most part, she is so behind her same aged-peers, that I no longer compare. Rather than being dismayed that she's not walking and talking, I can be excited about the possibilities that are within her reach. Maybe this year she will make the "mmm" sound, hold her head up on her own, grasp and hold a toy, take a meal of solids by mouth, or reach for me when she wants to be picked up.

A few weeks back we had a monumental "first," of sorts. Keira's "button" (port for her feeding tube) got pulled out of her stomach. Turns out it was my fault. I hadn't been diligent about checking periodically to make sure that the balloon, inside her belly with to keep the device in place, was properly inflated with water. I'd let it get too low, so it popped out more easily. Left with a hole straight into her stomach, we stuck a catheter in to hold the hole open and rushed to Boise, where the GI supervised while I inserted a new button. No sweat. We purposely chose a button that we could insert on our own. Some others require a hospital visit for each incident like this. Yah, it seems a little weird that this sort of thing is no big deal to us. I guess that's a statement to how much we've seen Keira go through. In the ende, the end, the button is a pretty simple little device. Medicine is not altogether different than plumbing and carpentry, I imagine.

While we were at the office that day, we weighed K, who was nearly 22 pounds!! You've never seen cuter chubby legs in a miniskirt.

Jeff and I went out of town to attend a CMV policy conference last weekend. K was in good hands between my mom and aunt Shelly, but when we returned, it became clear that the separation from us was more disruptive to her than we had imagined it would be. For a week or so, she was really disregulated, startled easily, struggled more than usual with reflux, and responded little to her various therapies. A few weeks back, Keira started feeding therapy, and last week that therapist aptly described K as "the most calm tense little girl I've ever seen!"

I've been feeling really well. I can drive again, which is nice, and I've been spending a lot of time helping out at the boys' school since I'm not much use with Keira. I find that that get pretty wiped out if I try to have a "normal" day in terms of how much activity I do. However, I am noticing an awesome difference from my pre-surgery self. I find that I recover so much more quickly than I used to. Even sitting down for a few minutes renews my strength. In my "past life," I felt like my life was continually a sprint to my next opportunity to sleep. It's exciting to think that from here forward I may have substantially more time (because of less napping) and energy for my littles.

2!

I've found Keira's birthday to be a tricky thing, emotionally. It's a milestone that inevitably brings to light all the ways she is not a typical 2-year-old. I imagine Liam, at age 2, standing straight and tall, excited for his first day of preschool.

 And Ronin, on his second birthday, with a cheesy grin, excited to go bowling for the first time, as he'd apparently seen on Curious George.

I considered writing a birthday blog post on September 9th, Keira's actual birthday. I started by trying to think of all that she's accomplished in the past year. I gave up after feeling saddened by how far into the the recesses of my memory I had to reach in order to come up with anything. Surgery? That's not really a milestone. New equipment? Nah. How about this? 

The curls! Those happened this year. Eventually, it occurred to me that three recent videos that we've taken of her capture growth; her love for the water and swimming (https://m.facebook.com/story.php?story_fbid=703270566410178&id=100001817230837), her ability to purposefully knock over a block tower (https://m.facebook.com/story.php?story_fbid=10204324255612284&id=1406105980), and rolling down the couch cushions into Daddy (https://m.facebook.com/story.php?story_fbid=10204626244001805&id=1406105980). And let's not forget her clear expression of yes/more and no/done. 

I considered not having a birthday party for Keira at all. Frankly, she wouldn't know the difference and an actual party can be pretty overwhelming for her. However, even though she's so unlike Liam and Ronin at age 2, it's a milestone worth celebrating nonetheless. I think every year that we make it through with Keira is worth celebrating, not just for her, but for her brothers, grandparents, and the multitudes of friends and community members that carry us along.

Seeing as I am only a couple of weeks post surgery (more on that later), Grandma Janie graciously and generously agreed to host a family party for Keira at her house. She chose a Hawaiian them and the boys enjoyed helping her pick out all of the decorations. 

The party was last night, and it really was so fun. Janie's house was so festive and the food was delicious. Keira seemed quite happy all through dinner in spite of the crowd. I dare say she knew all of the voices in the room and felt pretty comfortable. 

Notice Ronin's arm in a sling? Yah, that happened this week, too.

There was some hope that perhaps, with her recent efforts at playing with toys in her stander, that Keira might do the one-year-old-smashing-her-birthday-cake thing at her second birthday party. Unfortunately, by the time dessert came around, she wasn't too happy to be put in her stander. And by the time we opened presents, she definitely wasn't even going to smile about the crinkling of tissue paper, let alone have much interest in the toys. Perhaps this was why I hesitated to have a party in the first place. There are certain expectations at a typical birthday party, right? Namely, cake and presents. I guess I wasn't eager to witness her not performing the typical birthday girl duties.

Nevertheless, it was a fun evening. Keira enjoyed herself, I think, with all of the company and attention. The boys were proud of their contributions and I am so grateful to Janie for putting it all together for me. 

Tomorrow will be three weeks since my surgery. I'm really doing well. It's remarkable how little pain I've had. I feel pretty good, particularly when I'm sitting, but when I sleep, I really really sleep. I'm getting stronger every day, but when I stand and walk I am often dizzy and/or winded and/or can really feel my heart pounding. They say that it's normal for up to a month or two, as the blood flow in my body has been completely re-routed.

At times, this almost feels like vacation. I'm very comfortable lying in bed and reading or binge-watching TV, of which I have done plenty. Sometimes I feel like a princess, hanging out in the living room while a friend is mowing my lawn, another doing my dishes, and Jeff watching Keira. For some reason, it tickles me to think of all the people that have recently learned to tube-feed Keira because of me. I don't know why that's funny...partially I'm giddy that there are so many people I could have babysit that would know how to care for her and partially I know that this is a task most people never think of doing in their life and their willingness to learn is a testament to how much they care for Keira and her family. 

I do miss cuddling with Keira. Sometimes she lays in my lap, or better yet, on my chest, but she's not happy sitting still for long. She made my day the other day, by calling to me in her own way. She was sitting in her bouncy seat across the living room from me while a friend was watching her. I noticed that Keira kept looking at me over her shoulder and raising her arm up and down. Finally, she did the slightest little "uh, uh" and it occurred to me that she wanted me. And sure enough, when I crawled over to be with her she gave me a big contented smile. Bless her.

I've been worried lately about Keira's snoring. In spite of the adenoidectomy, she does it day and night and there are brief periods in which she seems confused about how to breath and swallow. I don't know if this is actually worse than it has been in the past or if I just have too much time on my hands to think about it. The reality is, if I let myself think about it, that Keira could live a long life or she could be taken down by her next bout with a respiratory infection or pneumonia. My understanding is that death eventually comes to kids like Keira through complications of those infections. On the positive side, as Jeff points out, she is bigger (you should see those chubby legs) and stronger than she's ever been. All the better to fight off those bugs with. 

Mommy's Turn for Surgery

I hesitate to use Keira's blog as a platform to discuss my own health concerns, but seeing as they will imminently be affecting Keira, and I'll be calling on you fans for help, it seems as good a place as any to get the word out. 

So, yah, I'll be having open-heart surgery 2 weeks from today. Honestly, Jeff and I keep using pointed obscenities and laughing. It seems preposterous. 

I've always hated running and have never been very good at it, but at the urging of friends, I decided last December to give it a good college try. I agreed to run the Ragnar relay in June with the idea that I could be free of running forever if I didn't enjoy it by then. I ran every other day religiously for months. I was not progressing. At. All. And I was frustrated by my shortness of breath. When I started having frequent dizzy spells in conjunction with running, I decided to check it out with my doctor. My doc sent me to a cardiologist who sent me to a pulmonologist who sent me to a lot of expensive tests and today I met with the cardiothoracic surgeon. 

Apparently I have a condition that I've had since birth that involves a hole between two chambers that isn't supposed to be there and one vein that's draining entirely into the wrong part of the heart. He said there is 2.6 times the amount of blood pumping through my lungs as there's supposed to be and all that extra blood is supposed to be going to the rest if my body. 

Weirdly, my first response to finding out I had a heart condition was a rise in my self-esteem. A good reason for always having been the dancer that sweat the most. A good explanation for eternally needing naps. I've forever pretended that these things don't bother me when they've perpetually made me wonder whether I'm just out of shape and/or lazy. My body's been working hard! 

Being a congenital condition, this surgery is by no means an emergency. However, I will be forbidden to lift anything (read: Keira) for 3 MONTHS post-op. For this reason, Jeff and I agreed that the sooner this gets done, the better. Keira is rapidly gaining weight and she's relatively healthy at this point in time. So here we go. 

I'm excited about the idea of having considerably more stamina and energy in the not too distant future. And, once again, I'm thankful to have all of you rooting for us.