Tuesday, March 20, 2018

Squirrel Supplies

Part of why I hesitate to write is because to describe Keira’s life seems so pedantic. So tedious. So many consequential or maybe inconsequential details. But last week something happened that added some levity to one of these wearisome quests we’ve been on for years...feeding.

Since day one, feeding has been an issue for Keira. But last year, we were at a pivotal point when she was in the hospital and having a horrible time with digestion. We figured it was as good a time as any to try out this new-fangled formula that the dietician had been telling me about since before it was on the market.

I hadn’t been willing to make a change before. Even though the formula we were using, like most “medical food” has an ingredient list that begins with corn syrup and from there has a long list of words I can’t pronounce. I actually came across an article once about a group of people protesting the food, saying “I wouldn’t feed this to my animals.” It was keeping her alive. I wasn’t going to mess with it.  But now she was in the hospital, not keeping anything down, producing more acid and bile and having a reaction that left a lot of blood in her stomach. The new formula was worth a try.

The new stuff was/is made of whole foods. It has about 10 ingredients, and all are things that I could probably grow in my own back yard. Completely organic, whole food, and approved by the FDA and covered by insurance. The stuff is edible, but is intended for tube feeding. It smells a bit like chicken soup and looks like baby food. The switch went well. Keira seemed to digest it just fine and within a few weeks, even though she was technically consuming fewer calories than she had with the previous formula, she was gaining weight. Her body does a better job of utilizing real food than chemical food. Go figure.

So it’s been wonderful, with just a bit of a drawback. This formula, because it is real food, varies in consistency a bit. Some packages seem oilier. Some are a bit thicker. For the first few months, we fed Keira without a hitch. After a while, it was trickier, as the food that typically flows pretty rapidly from the open syringe, through the feeding tube, and into her stomach seemed to keep getting plugged up. I thought the problem might be her button, so I switched that out. I thought it might be that the tubes and syringes were old, so I switched them out. Nothing seemed to improve the flow. When my mom or I am feeding her, it’s not a huge deal, frankly, because we blow into the top of the syringe to get it going again. But of course this isn’t a trick that’s condoned of any professional sorts, so the caregivers, therapists and teachers are left with a clogged feeding tube. They have to use the plunger on the syringe and sometimes that gets stuck, too, so they have to unhook it from Keira, squirt some food into a cup to try to dislodge the clog, hook it back up to Keira to resume feeding and repeat. And repeat. It’s a genuine pain, yes, and sometimes it’s worse than others.

Last time we went to the GI doc, I filled him in. I told him that we are really happy with the food, but that after a few months the food seemed to get clogged much more often. “You are the 5th family, now, to tell me the same thing!” he said. “I actually have been in contact with the guy at the company about it. He said that due to variations in the soil and the weather and different things, and because it’s real food, there are going to be some variations. But he’s interested in the pattern I’m seeing. He’d like to talk to a parent. Would you be up to giving him a call? None of the other parents are in a place where I felt I could ask them.” I told him I’d be happy to and he sent me home with the phone number and email of one of the company directors.

A few weeks passed before I made good on my promise, but I did finally email the director. I told him about the pattern that I had seen and said that it can be frustrating to the various people who feed her, but that the issue is not significant enough for me to want to change formulas, because overall we are really happy with it. I asked him if there was any way I could help.

The next morning, I had an email back from the director. He thanked me for my email and recounted what the GI had already told me about the natural variations in the all-natural product. “That said,” he continued, “we want the product to stay within certain speculations and if it’s not, we need to do something about that.” He asked if I would be willing to send him some of the product the next time I encountered a batch that seemed particularly problematic so that he could test it. He would compensate me for my trouble with free product.

This would be a hassle for me, yes, but it’s one of those things that sometimes happens in parenting Keira, where I feel like maybe my participation is making the world a better place for the next person in my shoes. I was satisfied with the response.

A couple of days later, though… a couple of days later I get another email, I guess from another director of the company (she had been CCed on the previous emails). First, she says, she wants to know if we are using a regular rubber tipped plunger to feed Keira because if we are, it will be “nearly impossible.” That’s why, she says, most people use these o-ring syringes or squirrel syringes. She included a link. She went on to explain defensively that the viscosity of their formula will not match other formulas because there is no corn syrup in their formula whatsoever. “What we find,” she said, “is that when people complain about our product, the problem really isn’t our product, it’s the syringe they are using.”

Also, and she was clear to specifically address the GI doctor here, too. She wanted to know whether I was using a blender when I was mixing the product with water. We “always advise blending it because oil and water don’t mix.”  

I’m already angry, feeling like I’ve just been lectured as if I am not capable of basic problem solving. “Oil and water don’t mix.” No, sh#*, Sherlock. Though she had given me two tips that I hadn’t tried, if she was so sure of their importance, then why wasn’t it on the packaging? I was already wanting to send a nasty retort, but first, I thought, I should check out what these syringes are.

You’ve got to be kidding me. The squirrel syringe is literally that. A syringe for SQUIRRELS. The website is all about taking care of squirrels. The FAQs cover what to do if you capture an injured squirrel in your yard, and what to do if your squirrel has mange or fleas. They tout the “miracle nipple” for bottle- feeding these animals and… there they are, the squirrel syringes. They look very much like the syringes that I get from the medical supply store, with a slight variation to the plunger and they are available in larger sizes.  

Wow. Just wow. There are so many places I could go with this. The company of the MEDICAL food I buy just sent me to a pet care website to help feed my daughter. Plus, they essentially said, “that’s what all the knowing parents do.” Her condescending attitude aside, should I be concerned that said syringes aren’t medical grade? That they aren’t covered by insurance? ($4.95 each plus $7.50 shipping and handling) Let alone the implications of the fact that this is a website for PETS? For ANIMALS? We have a hard enough time as a society, making sure that kids like Keira are treated like the living, breathing, feeling human beings that they are. Good grief. And if you’re a medical company that wants people to buy your product and you believe that you need these special implements, then why don’t you say so? Better yet, why not work that into a branch of your company so that we can get the syringes from your medical company rather than a pet store.

I was livid and simultaneously thought this was hilarious. In a half restrained manner, I returned her email, thanking her for the two tips that were news to me then said, “Frankly, I find this pretty frustrating. If you believe that this is something I should “always” do and without it would be “nearly impossible” to feed my daughter, then I think you should strongly consider including this information on your packaging.

Not yet satisfied, I sent an email to the GI doctor alone.

Syringes for feeding squirrels! Of course! Why didn’t I think of that? (I’m so annoyed)

To which he responded:

What the what?! I’ve never heard of a squirrel syringe! Is that even a thing?!

And I couldn’t agree with you more that before they can claim that they always (love the bold font) recommend anything, then they should make sure that their product information and website clearly states as such. And maybe some education for us non-veterinarian trained physicians and dieticians would help too.

To which I responded.

Totally a thing. See link below. How demeaning. (I’m going to go buy some now.)

Saturday, February 17, 2018


I’ve got the kids all squared away and I’m headed to a yoga class that I’ve been looking forward to for 3 weeks now. I’m with a friend who I cherish, but rarely get to see and between her 3 littles and my 3 kidlets, we schedule far more coffee dates than we actually make it to. Feeling a little triumphant, we’re walking down the hall of the YMCA and she asks how I’m doing. “Good!” I say, a little incredulous. 
“Wow! Remind me what that’s like,” she says. 
“Seriously,” I say, “Things seem to be going really well right now. I’ll probably jinx it by saying that…” 
Cue my phone. 
Not even joking. Not embellishing. Not exaggerating. 
The caller ID says it’s the clinic where Keira is at therapy. I sigh and lean against the wall. “This is Bekah.” Her therapist greets me and proceeds to tell me that Keira is ok, but that her hands have suddenly grown hot, red, and swollen. She doesn’t know what to make of it and is not sure what to do. 
The only thing in my head is a big question mark as well. Keira has never had any swelling that I can remember, no allergic reactions. The therapist agrees to text me a picture and I hang up the phone. 
Looking at my friend apologetically, I effuse, “Damn it!” 
“Not the choice of words I would have gone with,” she said. 
The photos come through and, sure enough, Keira’s knuckles appear to be disappearing. I agree to come and get her and, defeated, hang up the phone again. “Well, now you’ve witnessed it directly and know I’m not making excuses to not see you,” I tell my friend. 
“Even if you were,” she said, “I’d still want to hang out.” She walks me to back to the building’s entrance and as she’s trying to give me the 30 second update on her life, my adrenaline spikes and I’m not able to attend anymore. 
Swollen hands? Who do I even call? ER? Pediatrician? Could it be a cardiac problem? What in the world? In the car, on my way to the clinic, I call the pediatrician. I call Keira’s PT who’s helped us with the Baclofen pump. I call my parents. I call Jeff. I call the physiatrist in Twin Falls. When I get to the clinic, K is still happy, but, sure enough, her hands are even puffier than in the picture. They are also hot. 
My parents arrive just after me and we go together to the ER downtown. We don’t mess around with the closest ER anymore. Going downtown to the childrens’ hospital ensures that they have access to all of her medical records, we are a stone’s throw from most of her specialists, and it’s our best chance to get an ER doc who is not overwhelmed at the sight of Keira. 
Checked in at the ER, I make conversation with the nurse. He worked with us last time, a couple of months back when we brought Keira in because she was having trouble breathing after ingesting too much water during her swimming class. After a visit from a nurse, a nurse assistant, a doctor, 3 residents, and a social worker, Keira’s swelling has begun to subside. They are ready to send her home unless I insist on having a UA and some blood work done. 
I’ve gotten some return phone calls. “No, this is not a reaction that is likely to be because of the pump.” “The flu has been weird this year. Make sure they test her for influenza A.” The most helpful feedback comes from the PT. We’ve been in touch and she knows that Keira has had a bit of congestion, a little cold over the past couple weeks. “I’ve seen this in my other practice,” she informs me. “Kids like Keira, who have limited mobility, sometimes struggle to flush a virus out of their system completely. You’ll see puffiness come and go, particularly in the upper body, as they struggle to eliminate the virus.” She advised me that in the absence of increased swelling or fever, I might be able to help Keira move the virus with massage, pressure points, and the use of her vibrating chest vest. Encouraged with this advice and the negative influenza swab, we take Keira home.  

On the car ride home, I feel exhausted. “My adrenal glands are tired,” I texted my husband. I realize that the emotional highs and lows of the last 2 hours are not what most people deal with in a typical day. Is my day shot, or can I get back on the wagon? To resume my day as planned means going grocery shopping on my way back home and making fondue for Jeff and the kids for dinner to celebrate Valentines day. I would really like to bag it all and spend the rest of the day in bed, but after indulging myself with a BigMac Jr. and an apple pie, I pull into Winco for my shopping.
All is well, but my brain needs to process through it. Was it worthwhile to take Keira to the ER or was it a waste of time? Does the ER think we’re ridiculous for rushing her in like that? I remember that for the first 2 years of her life, things went from bad to worse SO FAST and that they don’t necessarily do that anymore. But they could. They certainly could. She tends to stay in pretty good spirits until she feels REALLY bad. Should I have pushed for the UA and the bloodwork? They would have done it if I had asked. Did I have good reason to? What if we missed something? They don’t know what to do with her. I hate being the pushy mom. So often I’ve been right, though. Up until the influenza swab, all they did was check her vitals. More or less, we could have checked her temp, her respirations, her pulse, and her oxygen at home.
I remember walking into Keira’s bedroom this morning after she’d left for therapy. It was quiet and cold and so empty feeling. At the time, I thought, “At some point, when she’s gone, it could be really hard for me to walk into this room. At some point, she won’t live here anymore. I hope she comes back home today….how strange are these thoughts? Do most people consider the death of their children so frequently?” I realize that that consideration in her bedroom this morning could have been a foreboding premonition. But, no. She’ll be there when I get back with the groceries. I’m so glad today wasn’t the last day. 


Friday, January 19, 2018

Happiest Place on Earth

We were so incredibly lucky to get to join Grandma Janie and Papa Dave, along with Aunt Shelly and cousin Sam, to celebrate their 40th wedding anniversary in Disneyland in November. We spent 5 full days at the park and stayed right there at the Disneyland hotel. It was just marvelous. It was definitely a longer time in Disneyland than we would have ever sprung for on our own, but it was so, so worth it and I'm so very thankful.

I had heard that Disneyland was really great for people with disabilities, but I had no idea. Our only other theme park experience with Keira had been at Legoland 2 years ago, where they had very few rides, but the one that she could go on, they made us hold her up in front of the measuring stick to see if she was "tall enough," before ultimately having to call a manager.

After checking in at guest services, we got a special access pass that was good for everyone that was with Keira, allowing us to bypass many lines. But it didn't stop there. EVERYONE was so helpful and accommodating. There were people at the beginning and end of every ride to answer questions, tell us what to do with our wheelchair, etc. Keira was able to go on many of the rides. She either rode in our lap or, on a few of the rides, the whole chair could go on. As we've seen before, Keira really enjoys being outdoors and being with the whole family. But we think she really enjoyed Disneyland for all of the lights and sounds and smells that were new. Her favorite ride was probably the monorail between the hotel and the park. 

The beauty of being at the parks for the better part of the week was that we didn't feel hurried to "get it all in." We could go to the parks for a couple of hours in the morning, then go back to the hotel, swim, nap, and return to the parks for a bit in the evenings. This also helped us bypass the heat, which was up to 100 while we were there! 

It was just so fun to be somewhere where we ALL could have fun and Keira didn't seem to be an anomaly or hassle for anybody there. They were so completely inclusive and accommodating that I could consider forgiving them for the amount of money they charge for the experience. It was truly magical. Such a fun, fun way to spend Thanksgiving. It was truly a vacation for all of us. I believe it was the happiest place on earth. My mommy heart was overflowing. 

Enjoy the photos!

First night in the park; enamored with the lights of the carousel

Cool headboard with a sweet lullaby and lights

Waiting to ride the Haunted Mansion

Serious talk with Snow White

"You brought your dwarf! [referring to Jeff] Next time I'll bring my dwarves!"

My favorite. I could have kissed Snow White.

Trying on Liam's new hat.

Love these two.

The whole crew.

Enjoying The Little Mermaid ride.

Character breakfast

Thursday, January 11, 2018

Wall of Hope

Sometimes it feels like we’ve had more than our share of pitfalls, toils, and debility. But life never, ever fails to offer hope in the most surprising ways. I received a phone call from a member of the March of Dimes back in November. The woman told me that nurses and staff at the St. Alphonsus NICU had nominated former patients and voted for Keira to be one of the two children added to their "Wall of Hope" this year.

Keira got her portrait taken. It may, in fact, be one of my favorite pictures of her. It doesn't show off her million dollar smile and shining eyes, but it does accurately capture her beautiful self as we see her 90% of the time.

They had a little ceremony to "reveal" the new installations on the wall of the waiting room outside the NICU. They explained that the Wall of Hope is designed to give hope to families who are currently in the NICU, wondering what will become of their new, fragile infant. I was pleased that they picked a child (Keira) who did not necessarily "turn out" the way that any parent initially hopes, but who affirms life and joy in the midst of it all.

Keira's behavior was fascinating. This is typically the type of environment she does worst in, and it started out that way...with her retching and needing to put her headphones on, etc. But then she seemed to catch on that this was about her and she became so smiley and engaged and interested. It was just adorable.  

The inscription reads:
After a seemingly typical pregnancy, Keira was born at full term weighing less than 5 lbs. With a myriad of symptoms, she was rushed to the St. Al's NICU and was diagnosed with congenital cytomegalovirus (CMV). Keira stayed for 4 weeks to undergo an antiviral treatment. As a result of CMV, Keira cannot speak, eat orally, or sit upright. In spite of the discomfort she faces every day, Keira has an effervescent smile and is a joy to all who are lucky enough to know her. Keira's struggles helped inspire the passage of Idaho's first law furthering CMV prevention in 2017. 
I gave a mini speech:
Well...it's kind of surreal to be here. Even the smells, walking into this building, feels crazy. It was a crazy time. Most people, I'm sure, can't imagine giving birth, then being discharged from the hospital 2 hours later to follow their baby to the NICU. I thought she was going to be healthy. It was a whirlwind experience 5 years ago and we are really appreciative to St. Als and the NICU because we were just so disoriented, not expecting any of this, for her to be sick, let alone have the life long circumstances that she does. And this was place was just like a warm cocoon of a family that took care of us for a month and got us ready to go out and do what we needed to do with her. I'd like to say that parenting Keira has been and continues to be the biggest challenge I've ever faced, but probably the most rewarding as well. It just means so much to me when circumstances come up to make me aware that she is deeply impacting peoples' lives besides just mine. That just means so much to me. So, thank you for doing this. 

Thursday, December 14, 2017

Politics, Part 2

Approximately one year ago, I wrote my first blog entry, “Politics,” after agreeing to what I thought would be dipping my toes into CMV advocacy. I soon became swept up in a tidal wave of activity and less than three months later, we had actually passed a new law in Idaho.

It’s one of those things. If you’d asked me 5, 10, or 20 years ago whether I had any interest in government, any inclinations toward political advocacy, or any plans to incite change via policy making, I would have answered with a resolute, “no.” And my dear friend who called to ask me to participate in the Idaho CMV Advocacy Project, got me to reluctantly agree by assuring me that for at least a year, my job would just be to meet with various legislators and educate them about CMV and our concerns. That was the least I could do, I thought. But my friend, already knee-deep, was ready to go and found that one of the very first people, if not THE FIRST person she spoke with, not only agreed to sponsor a bill, but found the topic so compelling that he saw no reason for us to wait, as planned until the next political season to try to push the bill through, but to go ahead THIS year! That meant NOW.

Well, how do you say no to that? This was quite possibly a once in a life time opportunity and if someone is willing to sponsor your bill, you don’t turn that down. Ok. What do I need to do? I had no idea. But I put one foot in front of the other. One phone call led to another and another and then a meeting and then a hearing, etc. It was a crash course in local government. What’s a bill? How is it passed? Why do you need a sponsor? Actually, why do you need a law? What’s a hearing?

Before I knew it, I was swept up. On more than one occasion, I’d be “sending out a few emails to legislators” at my kitchen computer and before I knew it I was having to order pizza because the roast I was going to put in an hour ago was still  thawing in the fridge while time flew by unnoticed. Day to day stuff would go undone and the boys knew “Mom’s doing CMV stuff again.” One sponsor turned into two and the three. Countless calls, emails, and in-person meetings with legislators and their staffers, doctors and their assistants, radio, newspaper, and TV journalists, other advocates and CMV moms nationwide.  I wrote, edited, and rewrote flyers, testimonies, and educational materials. I copied materials, stuffed folders, delivered and mailed pamphlets.

Of course, my three companions were simultaneously doing very much the same thing. It was a job in which there was always more work to do. Always more people to call, whether for an initial contact or to follow up or to provide more information. And, in the end, we just did as much as we possibly could before time ran out. It is my understanding that in Idaho, the House and Senate leaders meet only from January through March of each year. So if you want a bill created, read, heard, and/or passed, that is when you need to do it. And after March, there are 9 months for the committees to forget about you, and that’s assuming it’s a year in which the legislators and committees will stay the same because they are not undergoing an election that year.

Throughout this process, we felt that nearly everyone we talked to was extremely receptive to what we had to say. Oftentimes, we would start a conversation with a legislator cold by presenting them with the following graphic, emphasizing that though they surely had heard of HIV, Downs Syndrome, and Spina Bifeda they mostly likely had never heard of CMV. We then went on to talk about our own children and our simple request for help in raising CMV awareness. The response was typically and incredulous, “Why have I never heard of this before?” Females noted that they had known to stay away from fish and cheese and the cat litter box for things less common and/or devastating.

Our goal for a bill, after a lot of research and consultation, was for our state’s health department to give CMV at least the amount of attention that it gives to other public health concerns that affect pregnancy outcomes. That is, we wanted them to put CMV on their website, adding educational information and frequently asked questions. We also wanted to the department to issue informational materials that would be disseminated widely across the state to physicians’ offices, daycare centers, and public health service centers. Here is where we started to brush up against some resistance.

The health department was a little hot and cold. Long story short, they seemed to pay lip service to the importance of CMV education but it was just that. Granted that they are pretty fiscally limited, particularly in Idaho, we came to see that part of the hesitation was because of they blow back that could ensue from doctors. Frankly, and understandably, the medical community doesn’t necessarily want to take orders from the local health department because the health department does not, by and large, house the leading researchers and practitioners in each medical specialty area. Truly. It soon became clear that I was far more educated about CMV than any of the point people that I spoke with at the health department regarding the possibilities of this project. “But why would doctors dissent if they are just handing out educational pamphlets?” you might ask? Well, the arguments we heard were that doctors already feel burdened by how much information they need to get to pregnant women, so they didn’t appreciate having more. They particularly don’t appreciate being told to distribute the information when there’s “nothing you can do about CMV anyway” which speaks to the very necessity of the project in the first place because CMV is actually quite preventable but many doctors don’t realize that.

Confused? Refer to Bekah’s Way, WAY Oversimplified Illustration of Why It’s So Hard to Get CMV Prevention Off the Ground

So, moving up the food chain a bit, many doctors are under-educated about CMV and have come to believe that it is rare, it is not preventable, and there is nothing you can do about it. All three of these things are wrong, but not all of them are things that we (read “wee”) parent advocates can tackle. Many doctors need updated education about how to detect CMV and why that is important. And THAT is where we hit a road block. The powers that be (Centers for Disease Control, Food and Drug Administration, Academy of Pediatrics, American Academy of Obstetricians and Gynecologists, to name a few), the people who actually write the book on the “best practices in medicine” are a little behind (in my humble opinion) when it comes to keeping up with the times in regards to cytomegalovirus. The last I heard, the standard of practice for OB/GYNs upon learning that a fetus is affected with CMV is to advise termination of the fetus. Period. That’s it. No mention of prevention. No mention of treatments that have been proven effective (Cytogam) when used to treat a child in utero. No mention of testing for CMV infection in a pregnant mother. No mention of testing a child for CMV after birth. No mention of treating a CMV infected newborn with antiviral treatments. Clearly this is territory that is much more appropriately broached by the big wigs. The movers and shakers in medical research, industry, pharmaceuticals, and policy making. The current and accurate information needs to be used to inform the standards of care that all doctors are required to follow in the United States. Without it, my pamphlets in doctor’s offices are more likely to be seen by physicians as pesky leaflets of pseudoscience legislated by a couple of angry mothers who don’t understand the whole story. Although, excuse me, I think they are the ones who don’t understand the whole story.  

As mentioned, I believe that physicians in the U.S. are generally under informed about CMV. And, if they are informed, they find little support to do anything differently because of the current published standards. For those few conscientious physicians, dealing with CMV is an uphill battle. There is little guidance about when and how often to test for CMV. The evidence for immunoglobulin treatments is mostly done on foreign soil and so is still considered experimental in the U.S. That means it is extremely unlikely that these very expensive treatments will ever be covered by insurance and could be an enormous liability for the physician.

The more I understood about the nature of this problem, the more discouraged I felt. Convincing the average citizen that CMV is an important thing to know about and prevent is a pretty reasonable thing to do. But once we get past local legislators and work up the chain to professionals who actually know what is at stake with CMV and its treatment, the punier we seem to be. And the more depressed I am to find that there are great big politics, dare I say even corruption and decisions made based on wealth rather than the health and well-being of the citizens and I almost wish I didn’t know what I know.

And with all of that, I just had to step WAY back and remind myself to focus JUST on prevention. It gets too messy otherwise. But as you can see, it’s difficult to talk about prevention without people inevitably wanting to know about treatment if the prevention doesn’t work. It’s so sticky.

But it worked! Or, at least, we achieved our unlikely goal of passing Idaho’s first CMV legislation on the first try. I am proud of that. I do think we did something good. Something great, even. And I was surprised to find that I have some skills that make me fairly good at advocacy including not only a passion for the topic of CMV, but fairly good writing skills, comfort with public speaking, and the ability to sound (mostly) like I know my stuff when asked difficult questions on the spot. But the task and the process grated on me all along. I felt like I was supposed to be a saleswoman. I am not a saleswoman. All along, for reasons described, I wasn’t clear and confident in our ultimate vision. I always disliked, networking, schmoozing, dare I say kissing up to people I didn’t know. In this case often individuals I would never, in a million years have voted for.

There was a lot of psychological dissonance created in me, too, when I was spending so much time and energy trying change the state of CMV when… my daughter won’t be changed. In many ways, some explicit and some less overt, I was preaching that my daughter is not ok. I mean, we had her in the room of the hearing, essentially as a living, breathing example of everyone’s worst nightmare and what we all want to avoid at all costs. When in ALL OTHER SETTINGS of my life, I’m saying, “look at this lovely girl,” “there is so much beauty to be seen here,” “there is so much to learn from her.”  

We were commended over and over for our hard work and told that it was an incredible accomplishment in such a short amount of time. Like I said, people were very receptive to our stories. Keira and the other kids are powerful! But I think the real reason why we had so little resistance is because we are so low on the food chain in terms of making widespread changes happen in the CMV world. There isn’t a whole lot that can be done from the ground up, though that didn’t make it fruitless. But I do think that if we’d been seen as a threat, a lobbyist from the Academy of OB/GYNS or another organization could have squelched our success at hearings pretty easily by telling some other select details. As advocates, we were telling only parts of the story and knowing that it’s so much more complicated than what we are presenting. It’s politics and we were playing the game just like everyone else. But I don’t like the game. I don’t really want to play. I hate second-guessing everyone’s motivations and intentions. It felt…gross.

That said, and for what it’s worth, I met many politicians who I respect very much.  I have a better understanding of what they do for us as a community and I appreciate this work that they do. I believe that they have good hearts and a genuine desire to help people. They know how to play the game and are willing to play the game in order to further the common good. My hat goes off to them because I’m just not built to stomach it.

So what now? The new law was officially effective in July of this year. The health department now has a budget of $15,000 per year to work on this project and as far as I know, they are “actively” developing literature that will be distributed across the state. And as for the Idaho CMV Advocacy Project, we are still here, but probably only one of the moms still has all the passion and drive as she did a year ago. A couple have all but bowed out after the accomplishment of this year. Personally, I still consult with the group and I speak fairly regularly with medical and professional boards and organizations in the area regarding CMV prevention. There is some interest within the group to continue with further legislation and there are several legislators who have become passionate about the cause and are willing to support it. I, however, for the reasons enumerated here, do not feel that I could confidently support much more legislation before some major changes start happening from the other end of the CMV food chain.


Whew. It feels good, actually, to have written all that down. I’ve avoided writing about it for a year, afraid that laying it all out there might compromise our goals. Hopefully, we are far enough along now that it won’t really matter. Or at least, if people care enough to read all of this, they will understand my heart and therefore my reservations about working in the political system. In the end, I figure, this is part of my story. And it’s part of Keira’s story. And what good is the story if I don’t expose the dark and twisty (thanks, Grey’s Anatomy) parts?


Baclofen is a medication for treating spasticity that Keira has been taking for about two years now. It was initially prescribed at a very low dose by her physiatrist, who told us it was best for us not to Google it and, rather, ask him if we were worried about the risks. To put it simply, Baclofen has serious risks of overdose and/or withdrawal. Patients also tend to require higher and higher doses when using it long term. We suspected going in that if Baclofen worked for her, she may eventually need a pump.

We saw good effects from the drug pretty much right away. Keira’s muscles were looser and she was more relaxed over all. Initially, she was extra enthusiastic and giggly, as if slightly inebriated, but that part subsided. Therapists noticed that her volitional movement increased and she was less dependent on her primitive reflexes and tone. It became clearer that with the decreased tone also comes less vomiting.

Over the past 2 years, the physiatrist guided us as Keira needed a higher and higher dose of Baclofen more and more often. We eventually added a fifth dose to be given nightly between 2 and 3 a.m. We can bet that without that dose, she'll wake in the morning in a puddle of vomit and will be extra irritable.  

In April of this year, we had already reached the point where the doctor did not want to increase the prescription any further. He schooled us on the ins and outs of the pump and we decided to take the next step, an inpatient “trial” to see if the pump would be a viable option. We left that visit and waited for a phone call to schedule this one-day experiment in the ICU. 

Weeks passed with no phone call and I came to find that Keira’s physiatrist had had a “family emergency” and would be out of the office for several more weeks. Weeks turned to months. Repeatedly, there was a day set for his return and then he would not meet it. There was no other physiatrist or physician competent to handle Baclofen issues in the Boise area, even at the competing hospital.  

Keira's physiatrist was not even available for consultation or in case if emergency. I felt for his poor office staff who had to handle all of the phone calls from parents like me. I was a worried mess come July when Keira was due to have her next hip surgery. I was getting mixed messages with some clinicians advising that the baclofen pump surgery should come first, before the hip surgery so that Keira's high tone was less likely to damage the effects of the hip reconstruction. The hospital was supposedly working on credetialling another physiatrist so there would be some backup, but this was going to take months. We felt we had to do something, so we went ahead with Keira's hip surgery in hopes that the pump surgery would be close behind. The hip surgery went beautifully, but when the cast came off after 6 weeks, Keira's old patterns resumed in the way we feared, which threatens the longevity of those reconstructed hips.

The whole situation with the physiatrist felt so strange. I suspected that the doctor had either ended up in rehab or in jail. Otherwise, how could he suddenly be so completely unavailable? It also felt very tenuous. Here I am in Nampa with my child in this serious drug with no MD to help us any closer than Twin Falls. Nobody. 

Finally, in October, just as it was looking like the backup physiatrist would get credentialed before ours would return, he died. Suddenly and unexpectedly. 

This was heartbreaking. This specialist had really felt like part of our team. He was one of the first specialists that really seemed to get it. I loved him because he didn’t beat around the bush. He wasn’t afraid to call it what it was. He labeled Keira "medically fragile" and stated that we could never be certain whether she would wake up on any given morning. And at the same time, he wanted her to be happy and comfortable. He referred us to palliative care, one of the best connections we've got. He always asked how the kids were and recommended that my husband and I go on “wow” dates. One of our people, one of Keira’s people, was gone. 

I was so disappointed. I couldn’t help but think that he must have committed suicide. Or overdosed on drugs. I have no sound basis for this presumption. It’s just a feeling I get after trying to read between the lines. His obituary was sparse; little more than birth and death dates. I feel so sad for him and his family and his patients. But also, frankly, a little angry at him. You understood. You got it. And you opted out. It’s not fair! I can’t just check out; why can you? I thought we were a team. It's a strange position to be in. As a patient, or, rather, the patient’s mom, there was no outlet or ceremony or designated space for grieving. I didn’t know him personally and therefore I’m not entitled to participate in any funeral or memorial. Yet because he really understood, it felt like we lost a fairly intimate relation. 

For better or worse, the doctor’s death seemed to expedite things at the hospital. There is now a physiatrist in Boise a few days each month and available by phone. This doctor met us later in October for the pump trial. He is a wonderful doctor in his own right. He’s got a pleasant bedside manner, was comfortable with Keira and has first hand, meaning personal, experience with muscle spasticity. 

Keira was incredible on the day of the trial. Typically, kids get sedated for the procedure, but when I pointed out to the doc how little Keira actually wiggles, he agreed to try without sedation. The procedure involved the injection the Baclofen directly into her spine (Like a spinal tap, I’m told) and Keira  didn’t. Even. Cry. My guess is she was enjoying all the attention. There were probably 8-10 clinicians in the room at the time. Lots of observers because, once again, we were in territory that they don’t cover often. 

After the injection, our job was to just sit back and observe the affects. We were in the ICU primarily as a precaution in case the drug suppressed her breathing. It was actually a pretty fun afternoon. There is no better way to describe Keira than “noodly.”  She was absolutely limp and relaxed. Flaccid. Too relaxed, really, but the trial is really a firehose blast to see if the drug will work ultimately.

I was surprised and glad to see how limber Keira’s legs were. This was good news because it means that so far, the spasticity hasn’t actually limited her muscles ability to develop in length. Most astounding to me were Keira’s feet. In the past year it has struck me how more and more her feet are looking twisted and, well, deformed. With the relaxing agent on board, her feet looked utterly normal. 

Fast forward to December. Keira and I are sitting in the back seat of the van as we approach Salt Lake City. There is currently no neurosurgeon in Idaho who does pediatric Baclofen pumps, so Primary Children's Hospital it is!

Today we’ll meet the surgeon and tomorrow Keira will have surgery. She’ll have a hockey-puck sized pump put under her skin below her rib cage. Then a catheter will be threaded up her spinal cord as far as they can get it. The further up the spinal column, the more likely the drug will help her with her neck, shoulders, and arms; not just her legs. The pump works by continuously delivering microdoses of medication directly to where it needs to go, making it much more effective and efficient than oral Baclofen. The side effects are obvious discomfort from the implants, misplacement or slippage of the catheter and unplanned withdrawal or overdose. Also, we cannot adjust the dose ourselves, so we have to be in close contact with the doctor.

If all goes well, we should be able to come home on Monday. We'll keep you posted. As per usual, Keira's wonderful brothers are staying with Jeff's parents and my parents will be travelling to Salt Lake tomorrow to take some shifts on hospital duty.

Thursday, August 10, 2017

On Writing

“Rebekah, I think you are a writer.”

I laughed out loud. Partly due to the relief and release of having the validation that my writing and my way of thinking are valuable. Partly a nervous response to the inevitable anxiety and compulsion that would come with increasing my commitment to this hobby.

I’d been talking to my therapist about my tendency to have to think through things to the fullest before I felt free to move on. Whether it be a passionate feeling about something or a scene in a movie or a perplexing social interaction, I so easily get hung up and feel a sense of dis-ease when trying to move forward before I’ve completely processed/made peace with/understood the circumstances and feelings at hand. Is it about being in control? Is it about being artistic/creative/empathic? Do I have a slow processing speed?  I don’t know the answer. But whatever it is, Jeff even agrees, I want to squeeze every last drop of juice from the fruit in my brain. I want to appreciate the full meaning and apply it to the best of my ability. I’d like to think that this, for the most part, is a strength that serves me in positive ways. Perhaps it makes me more open to understanding the experiences of others. Perhaps I more richly appreciate aspects of this life that many don’t. Maybe. But, I know that it is often a hindrance as I struggle to recognize my limits, relax and let go of things that don’t make sense to me.

“Rebekah, I think you are a writer.”

I’ve often mentioned to her that I want to write. But that I don’t. There’s this really difficult push and pull. I really want to write. I feel like so much has happened and that there are so many issues and observations and considerations on my mind that are like caged birds wanting to fly.

There’s this method of therapeutic intervention called narrative therapy. The whole idea is that patients will find comfort and relief in narrating or re-narrating one’s own story. To clarify your history into a somewhat linear story with a beginning, a middle, and an end, with main characters, auxiliary characters, themes, a climax, and a resolution. It’s probable that part of what I want from blogging is to create this type of narrative. But lately, (as in, the past year or so), I feel less and less like I understand how our day to day experiences fit into the story. I don’t quite know what they mean or where they are heading. And so I don’t write. I feel guilty writing very much without being able to tie it all up into a neat and tidy bow at the end. It’s hard to write without being able to scrape together some sort of optimism or gratitude. I really want people to read, but feel like my writing, if I were to do it, would be repetitive and depressing and self-serving.

But I want to put it all out there.

I’ve asked myself, why don’t I just journal? First off, I kept a journal when I was a pre-teen or junior higher. A pink one with a little lock on it. Much later (maybe just a year in those days), I came upon the journal and upon revisiting the pages, I was so disgusted with my words.  I was immature and silly and boring. I was embarrassed. I threw it in the trash. I was pretty sure that my “deepest inner thoughts” were junk and that I was a terrible writer.

Fast forward two plus decades and I sure as hell don’t want to sit alone in my own thoughts. In fact, I do enough of that already, without keeping a journal.  I want to be loved and I want to be understood and I want, somehow, to make meaning out of the trials and tribulations of my little life. For better or worse, I value the immediate feedback that I get from blogging. The sense that others know me a little better, that I’ve made good on my commitment to be vulnerable and transparent, and that I’m not alone in my thoughts and feelings.

And then there’s the Swiss cheese. Since the beginning of my blog, I’ve tried to be as real as possible, though always eliminating a few topics for the sake of privacy, decorum and respect for those near to us. I never talk about how our parents cope with Keira and I don’t talk about finances or legal concerns. In the past year, it seems to me that these matters have blossomed and grown substantially. Increasingly, there are things I need to be especially sensitive and tactful about because of individuals and systems that are involved in our world.

It seems that the holes in this story have gotten so numerous and large that the cheese is no longer even snack worthy. Issues with therapists, clinics, nurses, and doctors are tricky to write about. Though I don’t name names, in this small community it is foreseeable that some readers would be able to identify the persons I mention. My political undertakings have left me extra sensitive about online persona. As a networking exercise, I “friended” many Idaho senators and representatives on Facebook, giving them direct access to my blog, which, in turn, could influence the effectiveness of my CMV-related endeavors. I also fear that sharing my story in a raw and vulnerable way could inadvertently have a negative effect on Jeff’s and my ministry at church.

Should I take the risk and share? Or keep it to myself? Somewhere in between?

Regardless, I fear that my therapist has awoken the beast. I was awake much of the night and awoke early this morning, narrating my life in my head. From experience, I know that this is what happens before a spurt of writing. Before an episode in which I produce a flood of writing with such automaticity and energy that I can’t stop until I’m done. In the end I feel exhausted, satisfied, and a wee bit anxious. I feel like I’ve just birthed an aspect of myself that is right there online for others to consume.

So here I am, starting with a piece about how and why it’s so difficult to write. But she may have created a monster. I’ve let loose and am considering about going back to write about the events of the past year.  I’ve wondered whether I should write more about my own coming of age story, perhaps as part of a larger project, maybe a book, someday. I’ve begun collecting quotes and images and books and articles that speak any sort of new wisdom or intrigue me or that articulate specific thoughts and feelings more astutely than I can myself. I’ve even wondered whether eventually I’ll be contributing writing to the field of psychology. Perhaps someday, for their licensing exams, psychologists will have to memorize Hall’s Stages of Special Needs Parenting. Who knows? Thanks for the vote of confidence, Barbara.

In the meantime, bear with me?