Thursday, December 18, 2014

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!

Monday, October 13, 2014

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.




Monday, September 15, 2014

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. 

Tuesday, August 12, 2014

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. 

Wednesday, August 6, 2014

I Made Pie!

It's the little things that indicate that I'm feeling a little more normal. I find myself listening to the radio in the car. I invite extra boys over to play at our house rather than sending my boys off to someone elses'. I clean out my closet. 

My first clue, about a week and a half ago, was that I made pie. What an extravagent use of my time and energy! To engage in a "project" that had so many steps (going to the store, requiring my full attention for a bit, dirtying the kitchen, 90 minutes to bake, 2 hours to cool) and wasn't directly related to the well-being of one of my children seemed like a wild and crazy thing to do that hadn't happened in ages. A friend came over and held Keira while I rolled out the crusts. It was a blessed day.

Keira has bounced back after surgery so much better than any of us expected. Like a newborn, she's gained an ounce a day since the surgery- nearly 2 pounds last time we checked. The GI doc and I practically did a dance when the scale read 19 1/2 pounds. In fact, he put her on a "diet," of all things, saying she couldn't continue to gain that fast. 

Everyone is noticing that K is more alert and interactive since surgery. She moves her head back and forth much more and uses her arms, in particular, with more volition. It's been a lot of fun using her stander because she seems to like it too. First, we put on her AFOs (ankle/foot orthotic) to hold her feet steady, then we strap her into the stander. I've tried to take pictures of her in it, but I think it's a had-to-be-there sort of a thing. The photos tend to look like she's in some old torture device. But most of you probably saw the video I posted recently on Facebook (Not sure why I can't get the videos to upload directly in my blog) and it's incredible. As opposed to sitting on her high chair or stroller, in the stander, she's able to muster strength all the way from her feet and we see her moving her head and arms like we'd never seen before. It is so encouraging to see her purposefully knock down a tower if blocks. I really didn't think those blocks, bought for Liam and used by Ronin, would ever be played with again. Moreover, the facility with which she's moving her head and arms allows for so much communication. She's making it clear that she understands some basic turn-taking, and that she recognizes words of things she likes (bath, shower, stander, swimming, brother, grandma). These little miracles bring lots of hope and possibility. 

My biggest struggle with Keira lately is the wrestling/juggling/drowning in her therapies. I'm pretty sure it is either impossible OR would take a robot of a parent to do all the therapeutic appointments, exercises, and equipment use at their therapeutic levels. I imagine my brother could draw a pretty funny illustration of K sporting all of her devices at once: the theratogs, the hand splints, hip brace, AFO's, and stander, while swinging on the trampoline and listening to music. Ben? 

The current solution? Well, the theratogs and hip brace are on hiatus because it's HOT. Hopefully we'll get back to that later. 

We're also happy that one by one, doctors are going by the wayside. No more ongoing appointments with the surgeon or endocrinologist. She doesn't have to see the audiologist or opthomology at for a year! She'll still have as many, actually more, therapy appointments (OT, PT, speech, feeding, and swimming) but 3-5 appointments per week is much more manageable than 6-8. 

With 2 weeks until school starts, the  boys have just finally started having some downtime. Some opportunities to be bored. I worked pretty hard to make arrangements for them all summer so that they wouldn't have to go to doctor appointment with K and me. It was a valient effort with mixed results. The boys missed me and vice versa. The extended time away from parents took its toll. I'll be ready for the school schedule to return. 

In sum, we're happy to be on the upside again. And my apricot pie with coconut crumble was delicious! 


Thursday, July 17, 2014

Adventures in Medicine

I'm overdue for an update about Keira's latest surgeries. June was a loooong month. To my dismay, her surgery date got postponed for 3 weeks. Not only did this mean having to re-arrange all of our schedules again, it meant continuing to essentially force-feed Keira much more than she wanted to eat and deal with the reflux/spitting up, etc. This was important in order for her to not lose weight before surgery. 

Since we had some extra time, we decided to go on a weekend camping trip (Keira's first), the weekend before surgery. I think, for the first day at least, she enjoyed being outside in the sun and the breeze, listening to the kids play, etc. She seemed overwhelmed and done with it all halfway through the second day. It didn't help that she got her first sunburn that weekend, too! Her weight was also down a bit on the day of surgery, but just within the limits to proceed as planned!

5 am. On our way to the hospital


Being back at the hospital was strange. Not quite homey feeling, but familiar. The smell of the sanitizer, the faces of many of the nurses and staff, the location of most things in the hospital room. That first day, for me, was a weird sort of relief, I think, in knowing that they were going to take care of her. I really only recognized that, though, in contrast to what Jeff was feeling. He was more anxious about the whole thing this time than I was. Not to say that I wasn't on edge a bit. I nearly cried when we went down to the cafeteria for breakfast, when K had finally been taken back for surgery, to find that it was closed for remodeling. 

K was in surgery for 5 hours. In total, there were 5 procedures: the button, the fundoplication, a hernia repair, tubes, and adenoids. This picture of Keira and Jeff's hands was shortly after she arrived in the PICU. They kept her on a respirator and quite sedated for awhile, so that she wouldn't disrupt her abdominal stitches.

The next couple of days, it was difficult to keep her comfortable. If she was too comfortable, her blood pressure dropped. If she wasn't sedated enough, she'd hold her breath (in pain, we think), and her heart rate would spike.

As the days went by, Keira got more and more comfortable, the cords attached to her started at 8 and trickeled down to 0, and they slowly started putting food in her stomach. The food was a tough issue and the main reason our stay stretched out to 8 days. Sedating meds and pain meds both slow down the digestive process, so waiting for that to pick back up took a while.




Day 5, we stepped down to the pediatric unit. The fact that Keira and I could both fit in the "crib" was a beautiful thing.


Day 6: We took her to the playroom. This is out on the patio. She got some fresh air and put her feet in the bead bin.


And on Day 8, we finally came home. Jeff and I were (are) both really exhausted, but K is doing great. She seems much more energetic. We notice her turning her head back and forth more and generally having more stamina. We continue to bulk her food up a little bit every day and though she doesn't always like it, we're moving at a pretty steady pace. She'd gained a pound already at her one week post op appointment! For better or worse, much of her therapy activities are stalled for the time being, just focussing on keeping food in at the moment.

The boys finally came home a few days after Keira did. They went on a wonderful vacation and while K was in the hospital they were doing stuff like this:
 And this:

Rough, huh? It actually worked out quite nicely to have them gone during that time, but I'm so happy to have them home. 

Look how happy!



Once again, we appreciate all the care and concern from the many people who love us (Bekah and Jeff) and love K. Your support (visits, texts, meals, cards, etc.) makes all the difference to us. If you pray, continue to pray for rest and peace and stamina for both Jeff and me. Life with K expectedly has it's highs and lows. For whatever reason, it's feeling harder to get back into a groove this time. 



Monday, June 9, 2014

Still Grieving

When Liam was born, I was a fairly isolated and overwhelmed new mom. Liam's pediatrician noticed and recommended that I attend a Moms' group on Melrose in downtown Los Angeles. The group was comprised of a half dozen other moms, all of whom had given birth to their little ones within about 6 weeks of Liam's birthday. The group was run by a counselor/nurse who let us talk about our birth experiences, gave us tips on nursing, attachment, sleeping, and infant development, and taught us to sing and dance with our kids. I found it so valuable that most weeks I would drive an hour through traffic from Duarte with an oft-crying Liam to attend these groups. Ever since, in the back of my mind, I've thought that someday I might put something like that together for new moms in my area. And now, as a psychologist at NNH, I have a pretty good setup for embarking on this specialty when I'm ready.

Now, I don't profess to be ready for this quite yet, but I sure do need some CEU's (continuing education units to maintain my license to practice psychology) and I do love Seattle and it just so happened that some of the leading professionals in the field of infant mental health were putting on a conference in Seattle last week....so I signed up.

I was excited to go. I wasn't nervous. I flew to Seattle, hung out with my brother and an old friend, stayed in a fancy hotel. The morning of the conference, I enjoyed the continental breakfast and rubbed elbows with an OT from California. But to my surprise, we were about 3 slides in to the presentation and I was in tears. Like...uncontrollable tears. The renowned speaker was showing pictures of infants, discussing how to recognize when they are content, overwhelmed, etc. The discontent babies were upset like typical babies get upset: they were too tired or too cold or needed to poop. I realized in that moment that I could force myself to stay in that chair and have an emotional wrestling match for two days or I could bag it and try it again in a couple of years.  So, bag it I did. I went to my room and cried for awhile. Then I went shopping and hung out with my brother some more and went home early.

I was kind of embarrassed and ashamed about the whole thing. Some people I know seemed to think, "Well, of course that would upset you!" And I felt deeply disappointed. I really wanted to be ready to sit through the conference. Apparently I don't have superhuman powers of psychological compartmentalization. I'd been talking with a friend who had reminded me that grief can be "tricky" and that it can sneak up on you in ways you don't expect. That evening I came across this quote by C.S. Lewis:

"Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape---Sometimes the surprise is the opposite one you are presented with, exactly the same sort of country you thought you had left behind miles ago. That is when you wonder whether the valley isn't a circular trench. But it isn't. There are partial recurrences, but the sequence doesn't repeat."

I found my heart sinking when I watched babies being toted around the airport. I don't like feeling that way. Having just finished The Still Point in a Turning World I thought, "maybe I should look for a new book. Maybe some other parent out there has written something I can relate to. Maybe there is some sort of special needs parenting book out there." My initial search on Amazon turned up the following titles (I'm not kidding): Shut Up About Your Perfect Kid, The Elephant in the Playroom, and My Baby Rides the Short Bus. Seriously? I wanted to throw up a little. So, then I sought out the online message boards. There are Stop CMV, CMV Mommies, CMV Advocacy Group, and CMV Stole My Child (My personal favorite--just kidding). Sigh. I didn't like those either. I started reading and found that it felt too taxing to learn about other moms and their kids who are functioning a) better than or b) worse than Keira. I know. Doesn't leave much, does it? If I'm turned off by all of these options, what kind of support to I really want? Do I want people to feel sorry for me? Do I just want to know the future? In the end, at least this time, I decided to take a deep breath and just keep putting one foot in front of the other.

Last week was insane. Keira was scheduled for 8, E-I-G-H-T appointments! It seems there is nary a body part or function whose corresponding specialty physician does not want to try to fix. I often leave appointments with another appointment or two. The sum of last week was a blood draw, a prescription for foot braces (in addition to her hip brace), a referral to a dental specialist, and a surgery date. This is K flirting with Daddy while waiting to see the surgeon.

The surgery, that I mentioned before, is sounding like a bigger deal than we originally thought. She's getting the fundoplication/nissen, a button (instead of the long tube out of her belly), ear tubes (her 3rd set), and an adenoidectomy. Of course, the nissen is the biggest deal. They actually take part of the stomach, wrap it around the esophagus, and suture it nearly closed to prevent food from coming back up. They are not real clear on exactly how/why it works and there are some scary sounding possible side effects. The surgery is expected to last about 3 hours and is scheduled for Friday, the 13th. Keira will be in the ICU on a respirator for about a day following the surgery. She's expected to have to stay in the hospital for 7-10 days. This is because they (I) have to find the delicate balance between getting Keira to eat as much food as possible without retching. Retching is basically the word they use for "trying to throw up when she can't throw up anymore." The retching could rip out the sutures.

My hope is that the surgery will make K more comfortable and help her keep more food down. That keeping more food down will help her gain more weight. That gaining weight will give her more energy to progress and that maybe, just maybe, we'll see more purposeful movement, more communication, etc.

What I worry about most when it comes to a hospital stay for Keira is the boys. Liam and Ronin are awesome. They don't want sissy to be in the hospital, but look forward to getting to hang out with Grandma Janie and others. I hate that they get my attention last, but I'm pretty sure it's more of a  problem to me than it is to them. In fact, I should probably wrap this up now so that I can feed them some dinner...

This is K today. This past few days, we've given up on feeding her orally altogether. We're tube feeding her day and night because she had lost a few ounces again and, ironically, they are concerned about doing the surgery if she doesn't weigh enough.

Please keep us in your prayers. I'll keep you posted about how K is doing after surgery.

Wednesday, May 21, 2014

Snippets

I find it hard to get down to writing lately. In my mind, I debrief myself from almost every encounter having to do with Keira with, "How would I write about this in my blog?" But then, often, I don't write. Nine times out of ten its because I feel like the text I'm writing in my head is too monotonous and negative. Though that may be somewhat true, in some ways, in how I think about Keira, but it really isn't true about my life in general. So another month has past since I've written, but here are the highlights that are still nagging for me to write them.

~~~
While outside playing a while back, a six-year-old neighbor girl was playing with K and asked me, "When is your baby going to grow up?" I love that she asked me that. And I wish I knew the answer!

~~~
Surprisingly, one of the most stressful things that I did with Keira recently was taking her to the zoo with me while chaperoning Ronin's field trip. I spent the day with a sizable group of parents who don't know me or Keira. I had a resurgence of that uncomfortable feeling like everyone's looking at her, wondering what's wrong, etc. etc. I feel like I want to just launch into what's "wrong" with her to just get it over with, but I don't. I know it's more awkward for me than anyone and that I'm assuming people are way more curious than they actually are. It was uncomfortable for me, nonetheless and I was always relieved when someone would just venture to ask, "What does she have?" I also had a strange moment when Ronin came up to me to say, "The other kids are laughing at Keira." Ug! "It's begun," I thought. Ronin couldn't tell me why they were laughing or what they were saying, so I opted to give them the benefit of the doubt and just told Ronin to ignore them.

~~~
A few weeks ago I had a "normal" day that left me feeling victorious for several days thereafter. On that particular Friday, I used very little of my mom's help. I ventured to take Ronin and Keira with me on a shopping trip to Costco. I figured a new way to try to transport her and Ronin thought it was great, too. It was a little cramped for groceries, but grocery shopping felt like a very normal thing to do. To top it off, I took the two of them swimming later that day. Keira seemed to really like the water (but if I had a dollar for every time someone thought she was "asleep" on the kick board!!)

~~~
I'm loving the "baby spanx," a.k.a. Theratogs. We've had a bit of trouble getting them to fit comfortably around K's G-tube, but they really make a difference! The extra snuggness around her middle has Keira moving her arms and legs more and she is holding up her head again like we haven't seen in months! See that little push up on my lap? That's huge progress!

~~~
People ask how Keira is doing and I'm never quite sure how to answer the question. She is happy and healthy, but she is hardly developing, it seems. The biggest concern right now is her eating. All in all, she isn't eating any more than she did before we started tube feeding. The GI doc and I are at a loss as to how she has gained any ounces at all (she is currently at 17 lbs, 5 ounces, and 20 months old). The GI has concluded, and I now agree, that we have been underestemating the severity of K's reflux all along. This would explain why we can't get her to eat any more and why she has been throwing up blood. Apparently her esophagus is eroding. Yikes. So, here within the next few weeks, she's going to have the full meal deal, a full service and lube, a surgery with several procedures. She'll be getting the nissen fundoplication to prevent her from being able to vomit. At the same time, they'll replace her G-tube with a less conspicuous "button," take out her adenoids (which, apparently, at 95% enlargement, are much of the reason for her endearing snort), replace her ear tubes, a tummy tuck, and a nose job (just kidding about the last two).
Easter
Blissful with Daddy. Always. 

~~~
Mom and Dad have been having a spectacular vacation in Italy. Gone for three weeks, this is quite an adventure for me, as well! I am accustomed to having my mom over for at least a couple of hours nearly every weekday. I tend to feel a little guilty about that, always wondering if I should be able to do all this on my own, yaddah, yaddah. My first full day alone with Keira after they left for vacation was eye opening for me and a kick in the pants. Keira and I spent the whole day out and about. Errands, therapy, a doctors appointment, and a "fiesta" at the boys' school. She seemed to do great...until that night she spiked a fever of 102 and kept throwing up. Jeff and I both agreed that she did not come down with the flu or anything else. Her little system had just had more than it could take that day. With rest, she was fine again within 24 hours and I am newly at peace with the idea that I need help with my kids every day in order to do everything that needs to be done.

I have had plenty of help while Mom and Dad have been gone, but it isn't the same. K doesn't usually eat a lot, as I mentioned before, but she will go 10 hours with a babysitter and eat absolutely nothing. She's a bit more discombobulated, being with different caregivers, even though they are people she knows. She's regressed to some pretty primitive reflexes, going back to being really easily startled, etc. I'll be happy to have Mom and Dad back and so will K!

~~~
A couple of very hopeful things have happened recently. Two days ago, Jeff and I were playing with K on the floor and she crawled. Seriously. Well, not the way you're thinking, but huge for her! On her belly, she bicycled her legs, gripping the floor and eventually working herself across the blanket without the help of her hands. She looked pretty proud of herself, too.

K has been showing more and more signs that she understands language. Today I asked her if she wanted to "eat" and she made what I call her "sphincter face," where she purses her lips, indicating that she doesn't want any more. That was without any bottle or food or anything around! Just the word "eat!" Very exciting.

Therapy was fun today. Both the OT and the PT were there, laughing and joking, and cheering Keira on (and repeatedly mentioning how unfair it was that Sharyn is in Italy---Mom, you might want to think of them when you do your souvenir shopping!) They tried standing her like this for the first time. K surprised us by supporting herself almost entirely on her feet and her upper arms. She kept pushing her head and shoulders up and had this look on her face like she was so proud being such a big, tall girl. I get teary eyed just seeing her upright like this. I suppose because it's so easy to imagine a real little girl (not that she isn't...please know what I mean) toddling around like toddlers do.


~~~
So, we're doing well. Really we are. Life is busy and there are ups and downs, hills and valleys, with K especially, but I think Jeff and I are both in a good place. There is some sadness that comes with Keira's development, or lack thereof, naturally. But both of us, I think, relish in all the richness that she brings to our lives. I've recently (finally) been reading The Still Point in the Turning World by Emily Rapp. She writes about parenting her son who died young of a horrible disease. I can identify with many of her sentiments:

"The goals for our children are simple and terrible and absolutely grounded in the everyday: dignity and minimal discomfort."

"As tragic as the situation appeared from the outside, the inside of our lives was often blissful, despite the daily very real dread about what was happening."

"One of the hardest parts of living with a disability is dealing with other peoples responses to it."

"I was terrified to be alone with him, afraid of the sadness and helplessness, anger and fear tat touching his head would bring on."

"It's as if there's another baby behind this baby. And we'll never get to meet him."

"He lived, I believe, in a perpetual state of being in the now that people tried to achieve on expensive retreats, chanting and doing yoga and tweaking their nutritional habits. Was he, in this way, more evolved? Did he embody a Tay-Sachs version of Nirvana, a kind of existential bliss, or was this an attempt to sprinkle glitter on a pile of shit or gloss over an absurdly tragic situation? Or could it be both?"

"Having no expectations for his development was both oddly liberating and horrific."

However I find myself quite saddened by her writing, too. Sad for her, not me. She seems, at the heart, hopeless. She's unable to take comfort in the care of others, dismissing its efficacy because others can't understand and are afraid of something like it happening to them. She also seems to be on a never-ending, fruitless search for the meaning of her son's life. She seems unable (I haven't completely finished the book yet) to come to a satisfying resting place about why this happened to her, why it happened to him.

I'm thankful for the assurance I have (Divine, I expect, as it doesn't seem to be something that would come naturally to me) that Keira is enough. Her life has worthwhile regardless of whether she reaches any of the measures of achievement that we hold most of our children to. Part of her story, as Rapp would say, is that K needs the freedom to be a person, to be who she is. And that's all. And in that personhood, which could be seen as so much "less than" my other children, she has so much to give.
Those eyes. 

With Liam at the "inclusive" playground


Monday, April 7, 2014

The Age of Equipment


When I last posted, Keira had just had her G-tube placed. She was a very good patient. Was particularly happy with a little morphine that first day.

Her first piercing.

Doctor said the surgery went well. However, during the surgery he noted that her sphincter at the top of her stomach is very "low tone," or loose, which probably explains why Keira doesn't eat more than a couple of ounces at a time. The sphincter doesn't close up tight, like most of ours do, when she's getting full, so she starts to throw up. Yuck.

The G-tube hasn't been the easy answer we had hoped for. The goal was to continue feeding Keira by mouth during the day, then feed her about 15 oz by slow drip through her tube overnight. Unfortunately, it doesn't seem to matter how slow the drip is, K starts to throw up after about 7 ounces most nights.

So, we've been continuing to problem solve this with the doctor. We tried a different formula. We did a barium study, just in case (it looked fine). Currently we're giving her a low dose of antibiotic at mealtimes (which has been shown to help motility). There may be another surgery in order.

All in all, K is pretty happy. In total, her daily food intake is about right where it was when we started the whole tube business a few months back. However, somehow, she was up to 17lbs when we weighed her today! She looks pretty well. Not too scrawny. At just about 19 months, she is the weight of the average 6-9 month old and the height of the average 10 month old. But then again, she's not your average girl.

So K isn't particularly heavy, but it is almost easier for me to carry Ronin, who weighs three times as much. That's because he perches on my hip and holds his body upright. K is getting longer and longer. It's really hard to carry her with one arm now and I often find myself knocking her legs or her head into things unintentionally. Bad mom! Which leads me to...

...the age of equipment. I've decided that this must be a developmental stage for children with disabilities. She isn't meeting the typical milestones, but she has reached a milestone of growth that seems to have invited an onslaught of new equipment!

1. The carseat. Keira was too long for the infant carseat and too floppy headed and underweight for the toddler carseat. I was relieved to actually find a carseat for her at Babies R Us that works great for her. It may have been the most expensive one in the store, but it is far and away cheaper than any carseat that is deemed "special needs" or "adaptive."

2. The wheelchair stroller. Similar issues with her head control and length have led to difficulty using a typical stroller. We got a great deal on this one and it works pretty well. K seems to be tickled to be "sitting up" and has even gone running with me a couple of times.


3. The bean bag. Far lighter than the stroller, I've bought three of these to provide an easy place to situate Keira when she can't be held. One for home. One for the dance studio. One for the church nursery.

4. The swing. Keira needs a lot of input and stimulation to do her best (ironic, really, since she can also get overwhelmed and shut down with too much). So, we've found that a lot of bouncing, vibrating, etc, helps with therapy. So, she's been using therapy swing more often and we've installed one, a hammock, downstairs in the living room.

This is Keira in her own mini ball pit ON TOP of a platform swing in therapy. Ours at home will be a hammock.
5.  The trampoline. Ronin got one for his 6th birthday. However, the OT is so excited to use it with Keira.

6. Prone stander. This is up next. This device will help Keira with head and neck control, and also put weight on her feet to help with overall, strength, growth, and digestion.

Not K. 
7. Theratogs. Also coming soon. These look like a large bandage and are kind of like baby Spanx. She'll wear them under her clothes and hopefully, with a more consistent feeling of upper-body support, she will venture to use her head and neck more.
Not Keira (she's cuter). 

8. Upsee. This, hopefully in the next year or so. This product is just being released this week. Isn't it awesome? Created by a mom in Europe somewhere (which, apparently, is where most of the coolest new innovative special needs equipment comes from). I can't wait!


http://www.fireflyfriends.com/upsee



It's all slightly overwhelming, yes. Especially given that this isn't all. We still have the hand splints, the hip brace, the food pump, and the chest vest. But mostly, it's encouraging to have stuff to try. It's hope.

Keira in the hip brace
 As always, even with all the "stuff," we want to try to be as "normal" as possible. So, here we are on a recent hike:
Enjoying Liam's fiddle lesson:

 Letting Ronin dress her up and pick out her "jewelry":
 Sliding in the park:

I'm hanging in there. The slumps that I have in which I feel too tired and overwhelmed to keep up with everything happen more often than I would like, but overall I think I'm managing okay. I have lots of help and lots of encouragement. One of my favorite bits of encouragement recently was this article: http://parenting.blogs.nytimes.com/2014/03/13/dragon-mother-emily-rapp-a-new-baby-doesnt-and-shouldnt-replace-whats-lost/?action=click&contentCollection Thanks, Andrea. I appreciate the sentiment that I'm not particularly brave or triumphant, but that I love no matter what, and I do what I have to do. A "dragon parent." The thing is, if I'm extraordinarily brave, or whatever, then I'm not normal. And if I'm so special, then that means that if "this" happened to you, I couldn't expect you to muddle through as well as I have. But you could, that's the thing. Few people think they are cut out for this, but when it happens, they rise to the occasion. Your kid is your kid and you love them the best you know how.

As I think about it, I really want two things to happen as a result of sharing my journey with Keira. First, I want you, whoever you are, to feel a little more comfortable with the idea of "special needs." I hope that you'll know a little more about what daily life can look like and how to love someone who doesn't have the same possibilities as you. That way, maybe when you see my daughter, you'll smile and say, "hi." I hope you won't be nervous and avoid us or be afraid of her because she makes snorting noises or crosses her eyes. Second, I want you to feel encouraged. Everybody has their own stuff, their own difficulties that they face and it is all so relative. What one person thinks is a piece of cake may be devastating to another. I know that having a child with severe disabilities is one of those things people fear and believe to be terrible and maybe impossible (because I have/do!). I hope that you look at our lives and see that, even though it's tough, we're getting along okay. And if this can be okay, maybe you can be okay, too.