Awakenings

Remember the early 90's movie? The one, based on a true story, where Robin Williams gives L-Dopa to a bunch of catatonic patients and they magically come alive? Recent weeks have made me recall this movie, as Keira seems to be building momentum in various ways and we are seeing mini awakenings in her all over the place.

So, there's this old medication called Baclofen. It's basically a heavy duty muscle relaxant. I've been hearing about it since day 1 with Keira. I got the impression that its use was somewhat inevitable but that we should put it off as long as we could because there could be a lot of unwanted side effects including cognitive slowing and seizures. Doctors said they typically used it on patients whose parents literally couldn't extend their limbs to change a diaper or clothe them. Also, it's common for Baclofen users to eventually need a Baclofen pump to administer the drug directly into the spinal cord. Visit after visit, I'd hear about this drug, but it seemed that Keira's tone wasn't "bad enough" to warrant the drug. One by one, though, things seemed to be adding up and I eventually wanted to give it a shot. The doctors, I figured, typically saw Keira in the morning, when she was at her best. Keira has always tensed up her arms and legs during the day. This was, we thought, to express being overwhelmed. I was also thinking about how in the afternoons, typically JUST the afternoons, Keira gets more and more cranky and uncomfortable. She has to have someone directly interacting with her to sooth her. She often retches and/or vomits at that point in the day, and when we finally put her to bed, she cries for a very long time before falling asleep. Plus! We know that Keira has a high pain tolerance. So I thought, what if all this is related to muscle tension/pain/fatigue? What do we have to lose? The final straw for me was seeing Keira sleeping like this nightly...

Notice the awkward/unnatural position and rigidity.

And waking up like this in the morning...

When she wakes up like this we say she's "curly." So I consulted with the physiatrist, discussed it with Jeff, then decided to give it a try.

Magic! After just ONE DOSE, Keira woke up laying flat in her bed. She was also very "talkative" that day. She was silly and giggly. Almost like she was a bit inebriated. The drug caused some lethargy initially, but as we toy with her dosage, she seems to be "awakening" more and more. Here are some things we have noticed:

• Waking up lying flat and with soft hands
• Making more sounds overall
• Picking her head up higher and longer and working harder in PT
• More coordinated tongue movements in feeding therapy
• More content and easier to keep calm in the afternoons/evenings
• 90% reduction in muscle tension, leg extension, and teeth grinding
• More kicking in swimming
• Eating her ENTIRE bottle for the first time in months
• Falling asleep more easily at night
• 95% reduction in retching and vomiting

Needless to say, this is huge. We have not seen any scary side effects at all. Perhaps we are also on the road to getting her to tolerate more food. Of course it makes me wonder why we didn't try it before, but I try not to go there. I need to just pat myself on the back.

The Baclofen did have a honeymoon period. After a couple of weeks, we were still seeing very good effects, but not quite as awesome as before. We were assured that this is a typical reaction. What you may not remember about Awakenings, is that the effect was short lived. The treated patients gradually regressed back to their former state. We are optimistic that, unlike Awakenings, the Baclofen will continue to work for her for a long time.

Not long after starting the Baclofen, Keira was offered a "trial week" with the JumpStart program. Jumpstart is a program for kids ages 3-6 who qualify for intensive speech, OT, and PT services. The program offers these therapies, plus group social activities, for kids 3 hours per day, 4 days per week. Keira has been on the waiting list since she was 2. This is a LONG TIME if you realize that all the research recommends the more, the earlier, the better, with all things therapy.

I have some very mixed feelings about the program. It is the ONLY program of its kind in the area, so it is in high demand, though they only take about 15 kids at a time. The program feels really competitive and exclusive. The kiddos with Downs Syndrome seem to be the elite of the disabled and appear to get into Jumpstart more readily than other kids. I get it. Kids like Keira are hard work both physically and emotionally. The "milestones" may be fewer and further between. Another characteristic of Jumpstart is that it employs many newcomers in their fields who undoubtedly feel overwhelmed by kids like Keira.

Anyway, a year ago, the program told me that Keira would not be admitted because they didn't think she had the stamina. Last week, she completed the "trial" and, partly due to the Baclofen, Keira did better, I think, than anyone expected. Last night, I asked Jeff if he'd checked the mail, because I knew that Keira's acceptance or denial letter would be there. He said, "Do you think she got into Yale or Harvard?"

"RIGHT?!" I said. It seems so backwards.

Later last night, Jeff texted me and said, "Keira got into disability college!" So, I guess, Keira will be starting the program in December. This is good news in that Keira will get hours and hours of intensive therapy. But also a bit frustrating at times because I resent going in there and feeling defensive, as if we have to continue to earn our keep in this prestigious club. There is a strict attendance policy and we are forbidden from having our kids in other, private therapies while they are in the program. We will pull Keira out of school to take part in this, but overall, I think it will be good for her.

We have been working with speech therapy on getting communication devices that can be used at home. Particularly now, since she has a good chair in the house, where we can mount various switches, it's a good time to invest in some equipment. This past week, we've been enjoying the use of her "step by step" switch. How it works is that someone (myself, a therapist, etc) records messages into the switch in segments. Then, each time Keira pushes the button, she "speaks." It's a little weird putting words in her mouth, but it's fun that Keira can come home with the switch from therapy and "tell" me what she's done. Or she can participate in dinner conversation by "talking" to us. It's working on communication and motor skills as well as teaching her another way to get attention, aside from pulling her head out of her headrest!

Keira seems happy with her progress, too!

I'm really excited about where Keira's communication is going to go. I feel like she understands a heck of a lot of what we say. If you know what to look for, she responds pretty readily to lots of names and lots of words. For example, when Jeff gets home, he'll ask her what did you do today? Did you see Garren? Or did you see Deana? And Keira's face (60% of the time) will brighten according to what actually happened that day. I love that she has the opportunity to make choices, too. "Do you want Daddy to change your diaper? Or Mommy?" (Did you see my trick there? She always picks Daddy. Ha ha!) Oh! Another example of her communication was when we had our small group at our house last week. Keria was sitting in her chair, between myself and Kori. When Keira began to cough I took her in my arms, and she would NOT stop giving me her "no" face. I eventually figured out it was Kori that she wanted!

When the boys were babies, I talked to them constantly. I narrated every activity, whether we were driving in the car, walking through the mall, or going down to sleep. With both, as with most babies, it wasn't long before they started to respond and eventually speak. I never talked to Keira. Maybe because I was afraid that even my speech was over stimulating. Maybe because I thought she wouldn't respond. Until now. We were taking a bath the other day and I noticed that I was telling her all about each body part as I washed it. Just like I had with the boys. Without realizing it, my belief in her ability and desire to respond has increased dramatically and this is a wonderful awakening for us both.

Because retinal and other vision problems are common in CMV babies, Keira's been seeing an optometrist since birth. Though we see him regularly, we've gotten very little information from him except that she probably wouldn't benefit from surgery. It's been difficult to get her to open her eyes in the exam room, let alone pay attention to the toys and stimulus card that the doctor used for the evaluation.

Over time, our curiosity about Keira's vision has increased. In PT and OT, it was frustrating to not know whether she preferred the right because she could see better, or because she could move better in that direction, or both. We decided to seek a second opinion from a developmental optometrist who specializes in vision therapy. Knowing we'd have to pay out of pocket (because, apparently vision therapy is on par with woo woo), we decided to give it a shot. And boy am I glad we did!!

This doctor won me over from the start when he admitted he was a little intimidated after seeing Keira in the waiting room. By now, you should all know I appreciate candor! He promptly became invested in Keira. He earned her trust (therefore her eyes remained open!) and was willing to think outside the box. He thought what I had to say was important and seemed to understand the value of sensory integration. We learned more from him in 20 minutes than we'd known about her vision in 4 years. She likely sees much better to the right and in the lower quadrant. She does have peripheral vision. She seems to have some left side neglect, meaning she often doesn't see there, but could be trained to, potentially. She works very hard to track her eyes together but still operates like an infant in this way. Her vision is probably fuzzy, if not double, much of the time. The reason she closes her eyes is not just because she's overwhelmed, but it's her equivalent of squinting to try to put her environment into focus.

But the best part was when the doctor decided to put a prescription in front of Keira's eyes to see what happened. It was amazing. She. Woke. Up. Her smile and attentiveness went beyond her excitement about having Daddy's attention. It went beyond the novelty of having something silly resting on her face. She was alert and looking around and her eyes were teaming together! Plus, she was so tickled by it! In fact, for the rest of the day, when we talked about her "glasses," she would just laugh!! We know that getting an ideal prescription for her is going to be a long process, but we are so excited about the implications! Just think. If she can see better, can communicate better and discover her environment more! Finding baby girl glasses via Medicaid is not a Lens Crafter's sort of specialty. So it'll be awhile, but watch out for updates!

Well, folks. That's the end of my mommy retreat. It's been perfectly lovely. I may not post again for a long time, but I will be back. Thank you for reading.

4! (A Birthday Album)

Keira turned four on September 9th. And what an eventful four years it's been. I feel like I've aged twenty, but I'm so thankful for all of the family and friends around us who have lived this past four years with us. To steal the title of a new movie coming out...there's been a lot of "collateral beauty."

I was really excited for Keira's birthday. For months, I had been meeting regularly with the moms of some of Keira's therapy-mates. We've become good friends. I was excited to have a party for Keira in which I could invite her little buddies. We invited several of her friends as well as their families. Our new patio was completed just in time and so the birthday party served as a little housewarming as well.

The day of the party, Keira seemed excited. She clearly knew there was something special going on. You are My Sunshine seemed to be the perfect theme, not only for us, but for all of her little friends. Keira wore the bright yellow dress that her brothers brought her from Hawaii. Only 2 kiddos and their parents were able to attend, but we had a good time. A craft. Trampoline time. Dinner. Her friends brought some very thoughtful gifts (She's not easily interested in your average toys, so this was very touching).

I have to admit, though, that after the party, I was extremely let down. I was surprised at myself. Not sure why I was upset. To me, the party felt off. Maybe a little forced. It stressed me out that I didn't know whether Keira was having fun or not. Whether or not she liked having all these people over. She had about an hour in which she tolerated all the hubbub, but then she seemed to close in. She wasn't interested in tasting the cake. She was too overwhelmed to open presents with all the guests there. I suppose the party was just a reminder, a flashing sign, reminding me that Keira isn't "normal." In the end, I think the party was worthwhile. We'll do it again.

 

 

 

Rewind. Summertime!

June

When I arrived home from my trip in June, our house was listed and it sold in just two days!

July

Keira is full of surprises. On the fourth of July, we typically go out to Jeff's grandparents' house for family and fireworks. They live atop a hill out in Marsing and the views are just great. During the day, Keira had been giving all of the signs that she was overwhelmed (coughing/vomiting/muscle tension), and I nearly stayed home with her. For whatever reason, we went ahead and took her and we had so much fun. First of all, her distant baby cousin, Bethel, was there, along with many other cousins, and she soaked up all of that attention. She spent an hour, at least, examining the cool blinky ring Grandma Joy gave her. She also unexpectedly loved the fireworks!! Sometimes it's really hard to know how she'll react!

August

August was busy, busy, busy. Jeff took the boys on a backpacking trip. The boys also went on a trip (Hawaii!!) with Grandma Janie and Grandpa Dave. Somewhere in there, we moved! Here's a picture of Keira holding her own pen at the closing.

August and September were a little rough. My parents had 10 days between when they got the keys to their new house and when we were going to have to vacate our old house. They had huge plans to remodel their new place, so as soon as they got the keys, they tore up/down 3 walls and ripped up most of the flooring. Unfortunately, putting it all back together has been a much slower process than they thought it was going to be. It was hard for me to move in to our new place, and feel good about making it ours, when my parents were essentially squatters across the street.

Now, 3 months later, my parents are close to being finished with their remodels. They've finally moved into their bedroom. And I think that they both really like their little "cottage." This is a huge relief to me and Jeff and I are enjoying making our new place our own.

We started with pouring a new, large, patio out back. It is fantastic. It's easy to roll Keira out there and seats lots of people for barbeques. Inside, we stripped lots of wallpaper (sorry, Mom!). I've done lots of painting and put up "tile" in the kitchen. Jeff bought me a new chandelier for our 15th anniversary. To help ease the transition, I hoped, I painted Keira's room (my old bedroom) to look just like her room in the old house. We recently hired a finish carpenter to build windowsills, add crown moulding, and transform the fireplace. I love it!

Mom's old living room

My new living room

Mom's old dining room

My new chandelier

Mom's old entry

My new entry

Mom's old kitchen

My new kitchen

The boys were not particularly excited about the move. I think they both worried that they'd miss the old neighborhood. The boys were actually in Hawaii when we moved, but the day they got home, we had a big family Nerf gun battle in our new house, thereby "staking our territory." It was a great evening.

The house is WONDERFUL. Better than I even expected. For one, we have Keira's wheelchair in the house, making it easy to zip her around to wherever we are. But being on one floor has other advantages. I feel like we are all together, whether I'm cooking or doing laundry, or working at the computer. One level just feels more cohesive, yet its big enough for us all to have our own space. It actually feels enormous to us compared to any other place we have lived. We feel so incredibly lucky and thankful to my parents.


Just before we moved into the new house, Keira got her new wheelchair. It had been months in the making to determine exactly what she needed, had all of the twenty-something parts authorized and paid for (the whole thing cost more than our first car), had it built and shipped. She was so cute the day we got it. She seemed to pleased. She looks really good in it. By that I mean, she seems well supported. She is able to sit up quite a bit taller than she ever was in her old chair because it fits her so snuggly. The chair is narrow, which makes it easy to fit through narrower doorways in the new house. However, no adaptive device is a slam dunk. The thing that makes this chair great, namely the small size, is also its worst characteristic.. The small wheels make it difficult to push her over even the most minutely uneven surfaces. I had to teach the boys to be really careful, so as not to accidently tip her over completely when trying to get her over a bump in the sidewalk or a gravel patch. Second, we ordered a very cool, high tech headrest that was supposed to support her head really well, and with a strap on her forehead, it would keep her from pulling her head continually out of the headrest (something she's done a lot in the past 6 months. We think its a way of communicating and/or getting attention, but it looks so uncomfortable and can be a problem during therapy, or if I have to pull over while I'm driving in order to fix it). Well, we were reminded that K has microcephaly. The head strap was too small and Keira could still pull her head away from the headrest. Rather accidentally, Jeff discovered that the forehead strap served its purpose if it was positioned as a chin strap. The PT thinks Jeff is a genius. We've since ordered a child size CPAP chinstrap and this seems to do the trick.

Trying out her new chair

All the time!!

The head strap that doesn't work

The chin strap that does

Oh! And school started in August. She was happy to go back and she seemed to do well going twice each week. The teachers love her and, if nothing else, it gives Keira something to do and kids to hang out with. Keira seemed fussy a lot of the summertime and all I could surmise was that she was bored. So this was a welcome opportunity.

Puzzle Pieces

I’m so excited and trepidatious about getting all caught up on my blog today and tomorrow. I feel like I’ve been stuck in a cyclone, with nary a minute to sit down and compose any words. My loving husband sees me. And he’s afforded me 36 hours AWAY including a night in a hotel, in order to nap and write and nap or whatever. I’m excited to unload many of the thoughts that have been swirling around, and feel some outside support, which inevitably follows when I share in this way. And trepidatious, as I look hard in the face of all that’s been going on. Or at least most of it (not even I can put it ALL out there). As I left the house this morning, Jeff said, “Have fun with your emotions!” I rolled my eyes, yes, but there’s truth there.

When it comes to parenting Keira, though all is going relatively well, it’s never easy. I hesitate sometimes to keep writing, thinking that it must look like I’m moping and can’t just get on with my life. Like I keep writing about the same things over and over. It never ends. For a while, I had numerous people recommending that I write a book. I’m not against the idea, assuming that most of the words are already written. My biggest hesitation, though, is that there is nothing to wrap up my narrative. No pretty bow at the end of the story. No resolution. It just goes on and on. I feel that way about my blog, let alone a book. But…it is what it is and I’ve decided to keep writing for myself. And even better if it provides support to other parents of kids with special needs. Even better if it helps my supporters who are interested to know what this life is really like. This blog has helped me keep my head above the waves.

The last time I blogged was the last time I was away, back East visiting an old friend, my sister-in law, and my adorable nephew. I had a moment of clarity on my flight from Nashville to D.C. A shortish flight, we didn’t reach a very high elevation. And the day was clear, so I looked out over the plains, the roads, the rivers. The houses looked like matchbooks and the cars were even smaller. The people, miniscule. I remembered being about 8 and finding a massive ant hill in my neighborhood. I watched the hill for hours, it seemed, trying to fathom how many thousands of ants were there on the edge of the sidewalk. Each of them was so busy. So tiny, but so determined. Each of them seemed to have a very important job and if I were to use my sneaker to demolish the hill (which, I did), they were back at work immediately. Yet, most of the people and cars that passed by didn’t even notice the ant hill, let alone each little ant.

When I was flying over cities and towns that day, I imagined that all the little people down there were like ants. So many of them that, as individuals, we can’t possibly be aware of them all. Yet each of them, presumably, is as wrapped up in their daily trials and tribulations as the next person. Each of them are just as loved, just as anxious, just as determined, and just as troubled as I am (or more!). Each is capable of loving others passionately, abusing others brutally, building bridges, and breaking them. It was a humbling burst of awareness. To remember that God knows and cares about EACH one of those little ant-people. That each one of them matters. But also a reminder to keep perspective. My life is just one little life. I’m important, yes, but my world is not THE world. Since that day in July, when I feel overwhelmed, I try to imagine myself on that airplane, looking down. The image helps me put things in perspective, at least momentarily. I tend to battle with the idea that everything is very important and urgent. This reminds me that the world keeps on turning.

I have a ton of anxiety…SURPRISE!! I have a ton of anxiety and, as you can imagine, much of it gets centered on Keira. Now, I had a lot of anxiety before Keira, but its come back in a new and visious way, with all kinds of ways to justify it, so I’m dealing with it anew. I’ve found a wonderful therapist (Finally!) I’m finally seeing that I have feelings. And I have feelings about my feelings. And I have feelings about my feelings about my feelings. (Feelings³) I waste way too much energy worrying about how to I ought to feel about things. I’m trying to sit with the idea that I’m a pretty darn ok person if I stick with my primary set of feelings. And I’m trying to figure out what those primary feelings are.  I feel pretty vulnerable about this. I think too hard. I wouldn’t share it except that I expect I’m not the only one and perhaps it could help you to know you aren’t alone.

Richard Beck is a psychologist and theologian who writes books and a blog called “experimental theology.” Jeff reads his stuff regularly and we call Beck his “theological boyfriend.” Anyhow, Jeff occasionally shares his insights with me. One idea that’s stuck with me is Beck’s notion of anxiety (which is a word largely interchangeable with fear) as being the biggest spiritual challenge of modern day. It’s rampant. It’s alive and well in many of the people around us who are overextended and overworked. We’re all trying to do all the right things in order to shield ourselves from _____. All this doing, doing, doing, and we don’t even realize it’s rooted in anxiety. Anxiety is sneaky that way.  

A good friend who is a nurse recently told me about her observation of patients that are facing cancer. The ones who are “brutally educated” (as Jeff was once called), tend to have a harder time coping. They want to know all they can know, inside and out, all of the options. It’s harder for them to trust the process and there is more fear of making the wrong decision or missing out on something. Whereas the less educated folks seem to have some healthy resignation. “What do we do doc?” Ok, lets’s go.” I’ve never wanted to be the latter person, but I do now. I want to believe, really believe, that everything is as it should be, that I am good enough no matter what. The effect of which, I imagine, is that my brain can shut off. Take a rest, stop running like it’s going to miss something.

But it my brain runs all the time. ALL. THE. TIME. Round and round I go, making sure I don’t forget anything. OT. PT. Speech. School. Meds. Bottles. Preauths. Doctors. Massage. Stretching. And on and on and on. It’s not unlike a person with PTSD (Posttraumatic Stress Disorder). This tape keeps playing over and over and over in my head and I’m trying to keep some inevitable catastrophe from occurring.

I feel overwhelmed so much of the time. My energy level is so up and down and I’m sick of it. My physical/emotional well-being has seemed so precarious in recent months. I hate it. It’s gone so far as to me daydreaming about how nice it would be if Keira was in the hospital. Because THEN! Then someone else would be taking care of her and I would know that I was doing what needed to be done.

You see, on a daily basis, Keira seems to be like this enormous jigsaw puzzle. Every doctor, every therapist, and every teacher gives me pieces and tells me that they should probably go together. Heck, maybe I contribute more pieces than any of them. So, every day I wake up and I try to frantically put this puzzle together. I don’t know if I have all the pieces. I don’t know if all the pieces I do have even go to this particular puzzle. I don’t know if the puzzle is even meant to be complete. And I get so frustrated because everyone thinks they are helping by giving me pieces, but nobody is helping me put them together. Meanwhile, Keira sits by, often with Grandma or with her newest caregiver, smiling and happy, eager for attention and love. And if I could just get these pieces together, then it would be easier for me to just be with her.

I don’t expect Keira to ever be normal. I don’t. But I do expect myself to do EVERYTHING for her that I possibly can. If Keira doesn’t meet every last drop of her full potential, then it’s on me. And that’s harsh. I know it is, but that’s how I’ve been operating. In my mind, the “good enough” parent just isn’t good enough in this situation. And I’m trying to work through that.

Deep breath. Sigh. If you've read all of this, I love you! And here's your reward:

B12 Update

On November 11th, I wrote:

Update!!

Keira's UA came back looking good, which rules out kidney failure, which is what I was most worried about. Unfortunately, Keira's blood work got misplaced, so she has to get it re-drawn today. Our beloved pediatrician is kind of at a loss, but still concerned about the B12. She's going to send us to/consult with a geneticist, metabolic specialist, and infectious disease specialist. Apparently, B12 can be an indication of a genetic predisposition to cancer. We should hear more next week.

Then on November 12th, we had such a great day together:

Grocery shopping can be a feat with this girl, but she was my little helper today!!

 Plus DIY accessible parking. I feel I should get an award today for ingenuity in grocery shopping!

One last post about our lovely morning together. When stopping at Home Depot for paint, we came across a whole display of these toys that I formally thought of as of obnoxious but now delightful because they're the only toy that gets a reaction out of Keira. Anyhow, I let her choose (I hold up two at a time and she looks at the splash smiles at the one she likes best) between the one pictured and two more standard Christmasy ones. She clearly chose this one! Typical little girl moment!

That was a stellar mom day, if you ask me, and evidence that our imminent worries about Keira had passed. To catch you up...we ruled out liver damage and kidney failure and leukemia. We also found out that Keira's blood test drawn LAST YEAR by a different doctor showed the same result, meaning that her B12 has been elevated for a long time. After doing some research, we thought that perhaps Keira's medical food, which is full of chemicals*, might be causing the B12 retention. However, the dietician confirmed that hundreds of her patients are on that particular formula and don't have the B12 issue.

Long story short, we don't know why her B12 is high. We get to add 2 more specialists to the list: metabolic specialist and geneticist. We're chasing shadows. Maybe it's nothing. High B12, in itself, isn't necessarily harmful. But it is very unusual and is often a marker of bad things (noted above). She doesn't have any other new symptoms that we know of, so...life goes on.

*This is for you if you like to geek out on medical stuff... My friend Jos Zamzow drew to my attention that B12 supplementation (Keira's formula is, essentially, one big supplement, and it is her only source of food) comes in 2 forms: methylcobalamin and cyanocobalamin. If the latter makes you think of cyanide, you are on to something. Cyanocobalamin is not something nature intended for our bodies to deal with. However, this form is the most commonly used in vitamins because it is cheaper and easier to manufacture. Jos confirmed that the company making K's formula does use the cyano version. Our theory was/is that perhaps the cyano was hard for K's system to digest, therefore causing her to retain the B12. However, given the dietician and metabolic dieticians' assertions that they've seen hundreds of kids on this formula long term and no elevated B12s, this conclusion seems unlikely.