Our Claire Journal

Six months ago Autumn and Heidi were wrapping up school and Claire had just presented a new wrinkle for her ongoing care. Since then a new school year has started and we’ve made headway on improving Claire’s clinical therapy.

A summary of the events I began to report is in order. I wrote last during the anniversary week of Claire’s accident, from the same room we had spent two years prior. Claire has been admitted back to the hospital twice since then, both times due to low blood counts requiring transfusions.

It took us about four months to get Claire to the point where she was no longer losing blood through her colon. We had initially hoped that the bleeding was due to diet; however, that was ruled out after switching to a more elemental formula without any improvements. Steroids were able to bring the bleeding under control, yet they only masked the problem. Two lab tests and a second opinion later, Claire was diagnosed with ulcerative colitis, a genetic disease that is chronic.

Like all scientific medicine, the process for treating Claire has been slow: we are beholden to a slow time-table that is restricted by the need to change only one variable at a time and give each change the time to show results positive or negative. After allotting four weeks to the diet change before determining it wasn’t effective, we started Claire on a new medication called Sulfasalazine. Claire’s case is particular because the drug must be administered via her G-tube and in order to get to the lower intestine, the drug needs to be compounded with a vehicle that won’t be digested before it has a chance to reach the colon. This limits the medications she can take.

Two weeks after starting the Sulfasalazine therapy, there was still blood present and we were concerned that it would not be effective. Our concerns were rooted in the clinical treatment progression for Claire: if the Sulfasalazine didn’t work, we’d have to move to a drug that would compromise her immune system further, and if that wasn’t sufficient, we’d face partial or total colon removal.

Keep in mind that our sole focus was to stop the bleeding. While the colon removal seems dramatic, the important thing is to make sure that blood loss does not continue.

We increased the Sulfasalazine dose while also exploring other treatments. With help from some friends, we researched probiotics and determined that one probiotic had enough clinical support to warrant an introduction. VSL #3 is one of two probiotics that have positive outcomes with ulcerative colitis.

After six weeks of probiotics treatments and tapering the steroids, we believe that Claire is finally at a stasis point. We will continue to use a mix of Sulfasalazine and probiotics to manage any flare-ups with her colon. Our hope now is that we have enough of a handle to avoid any more hospital visits requiring transfusions.

The time change last week seems to have coincided with some sense of a return to normalcy after the last six months. We are not built for constant flux. Our family craves some sort of routine and with the extra hour, came a modicum of relief that we can assume some version of routine. We’ve felt that our journey since late May has been stilted and unpredictable. It’s took its toll.

Throughout the volatility, we’ve continued to rally around each other and steal time as a family when we can get it. There are periods when we’re oversubscribed and miss the moments we have to just let down and relax. But we remind ourselves that it’s only for a season and then we will have another “new normal.” We find ourselves reminding ourselves more to enjoy the calm more now because inevitably, there will be some tumult around the corner. I understand that I’m now describing everyone else’s lives as well: we all share schedule insanity.

We’ve found that there is one sure trick to making us slow down and smile. Claire is infectious. No matter how tired or exasperated I may be, if I walk in to a room with Claire, I now how a reflex reaction to say “Hi Claire!” and do something ridiculous to make her smile. Tiffany, Autumn and Heidi are not immune either. Claire has us all trained well, because we know we will be rewarded with a smile, and sometimes with a laugh. Claire’s powers extend across screens as well. Two weeks ago my brother was on Skype and had Claire laughing. And once he got her started, he couldn’t stop. It’s too rewarding to make her laugh.

Despite the busy schedule, we’ve all managed to grow and learn. Autumn and Heidi have been involved in various clubs at school and continue to improve at piano and violin respectively. Tiffany has been making baby blankets for tow important babies expected in January and is looking forward to making a trip home to Colorado to meet both. After a three-year hiatus, my work-related travel has resumed.

In short, we can’t complain. We are looking forward to seeing family and friends over the holidays and wish the best for you and yours. Thank you for continuing to think of and pray for Claire. We will provide another update as developments warrant.

Take care!

I’m writing this update from a Medical City bed, almost two years to the day from Claire’s accident. I have a number of updates to provide from the last few months; however, I would be remiss if I buried the latest happenings.

Claire is undergoing some tests after some abnormal activity began yesterday. Claire has been having gastrointestinal problems the last week and a new development yesterday prompted a visit to the emergency room: we found significant amounts of blood in her stool. Rather than abate through the night, Claire produced a number of blood-only movements. We’ve slowly started opening Pandora’s Box on medical tests and nothing has come back conclusive yet.

Aside from some general malaise and the aforementioned symptoms, Claire is acting normal. She smiles and is attentive. Her coloring is pink and rosy. And she’s being much more patient than her dad. I’ll post an update when we get a diagnosis.

If there’s any good news, this impromptu trip has given me the time to post an update. While there is not much to report, there are some new items that bear attention.

The largest docket item is the Baclofen pump. If you recall, the pump was something we considered early in the process as a means to combat Claire’s muscle tone and spasticity. Her slight frame made her a poor candidate then.The pump conversation resumed about four months ago as a potential solution for making Claire fully relaxed. The first step was to have a pump trial, a minor outpatient procedure to determine if her body would respond to the pump: there’s no need to take on the risks of the pump install if she isn’t even a candidate.

She was a candidate. Our next step was to meet with the neurosurgeon and get his opinion. She was not a candidate in his mind.

This warrants a refresher on what the pump is and aims to accomplish. The Baclofen pump requires major surgery for install. It involves placing the pump below the skin in the abdominal cavity then snaking a tube to the spine where the medication is delivered directly to the spinal cord. The benefit of piping right into the cord is that the global effects – like a cloudy mind and prescription efficacy – are avoided and the symptoms – muscle tone and spasticity – are treated more directly.

Aside from the standard risks associated with major surgery, there was the looming question of, “Will Claire even benefit from the pump?” Claire isn’t highly spastic. The pump has worked wonders on patients with severe tone and spasticity. Claire doesn’t fit that bill. The neurosurgeon was concerned that the negatives would outweigh the gains. Surgery risks aside, he was worried that the pump may make Claire too relaxed: the extra-strength Baclofen would fight against her abilities to hold her head and participate in therapy sessions. We decided against the Baclofen pump.

The pump was our major consideration in the last six months for Claire’s treatments. Everything else has proceeded as normal. Claire has continued to attend her therapy sessions every week. She is slowly gaining the ability to control some movements. She is able to roll over with coaching and limited assistance. She’s started reaching for and grasping puzzle pieces. She is making more effort to look out the window and take in her surroundings on car rides. Nothing monumental, but progress still.

The rest of the family has been doing well. We entered a new phase mid-January when my career moved to “In transition.” We’ve spent the last few months interviewing and evaluating what direction my career will follow.

Aside from that hiccup, the family has been keeping busy. Autumn and Heidi are ready to wrap up school this week and Tiffany is counting down the days to a milestone birthday.  We’re enjoying our time as a family, sometimes wishing it would just slow down a little.

Thank you for your constant support. This week marks two-years since Claire’s accident. Thank you for encouraging and praying for us since then. You humble us with your generosity.

I will let you know what happens in the next few days.

The last five months have been great and action-packed for the Dallas Martins.

We made our first family trip since Claire’s accident in late September. My youngest sister was getting married in southern California and everyone was in the wedding except for Tiffany. Poor Tiffany. We made it a week-long trip, took the girls to Disneyland and introduced Tiffany and my brother to Northwood’s Inn and their exquisite wall art. The highlight – as always – was being with family and goofing off together.

We’ve added some new members to our family as well, by Claire’s choice, and I mention this because they were ever-present during our trip in California. Phineas and Ferb, of Disney Channel fame, are daily visitors. Claire is slow to wake up in the morning, albeit a little on the cranky side. Phineas and Ferb make short work of that disposition each day. They worked wonders during while navigating the patchwork highway system in California: we’d bring multiple fully charged iPods and iPhones on each trip pre-loaded with Phineas and Ferb episodes and end the day with energy depleted for both the electronics and the parents.

Phineas and Ferb have come to the rescue in other areas as well. As Claire has continued therapy, some exercises have gotten a little more intense than others. Claire has also shown muscle fatigue which makes her more disposed to pain during stretching and therapy sessions. She doesn’t hesitate to tell us when she’s uncomfortable and a small whimper soon turns to uncontrolled sobs if a stretch is held too long or she has to stand up for a prolonged time. We’ve found that if she can fight through the initial pain and doesn’t work herself up over having to do the stretches, she can benefit from longer exercises, like standing in her stander for more than 15 minutes. Phineas and Ferb have provided the optimal distraction. Even if Claire has worked herself up, we can bring out Phineas and Ferb and they have the power to help her moderate and calm down. We don’t go anywhere without them anymore.

Three-and-a-half inch screens, however,  weren’t cutting it anymore, so we used some of the funds donated to Claire to purchase an iPad 2 in October. We’ve been able to download a number of therapy apps as well that require reaching out and touching. Tiffany has started using Phineas and Ferb episodes as a way to get Claire to reach as well: “You can’t start watching unless you reach out and press play.” It’s the reward approach to motivation and it works. Most of the time.

We lost some continuity through the holidays for a number of reasons. Multiple drivers impact Claire’s therapy schedule. Weather is the determining factor on horse therapy since Claire rides in an outdoor – though covered – arena. Dallas has head an up-and-down three months including heavy rain – finally – and dipping temperatures. Pair this with the seasonal bugs floating around and sticking with a schedule has been a tough prospect.

A big interruption came last month as well. Tiffany and I celebrated our 10th anniversary with a trip to northern California for eight days. We spent four nights three hours north of San Francisco in Mendocino County and wrapped things up with three nights in San Francisco.  Our intent was to get away from the noise for five days before slowly easing ourselves back into the bustle. It worked well.

Our drive up to Mendocino was fantastic, stopping briefly in Sausalito for lunch before making our way toward vineyards and redwoods. Our drive took us right through some state protected land with trees guarding both sides of the two lane road. Now when I moved to North Texas, it took me a while to get used to some of the smells that can assault your senses: they’re not pleasant. In the northern Californian forests, however, the smells are sublime. I could get used to them. Tiffany and I took a brief walk through the forest as the light cast cookie cutter shapes on the floor. It was grand.

This jaunt inspired the first picture of the trip for me. Tiffany is in the bottom left hand corner, dwarfed by the trees.

Twenty minutes after exiting the forest Tiffany’s breath was taken away. We came over a bluff and in to full view of the Pacific. I’m not prone to superlatives, but it was stunning. The coastline was our guide to where we were staying. Alegria Inn is a family run business that operates a handful of cottages and rooms in Mendocino proper. They have a private beach and loads of character. The innkeepers, Elaine and Eric, are originally from the Bay Area and have been operating the Inn for more than 13 years now. We ate at a lot of spots in and around Mendocino, however, the best food we ate was at Alegria. Every morning Elaine prepares a full breakfast for the guests. It was wonderful, including the edible flora.

Tiffany and I stayed in the Cove Cottage which has its own private pathway down to the beach on Mendocino Bay. We arrived in Mendocino in time to catch the sunset and it set the tone for our stay on the coast.

We got a lot of exercise walking the beaches and headlands around Mendocino, particularly during the morning and evening when we wanted to take pictures. On our way back from a trip north of Mendocino, we pulled off to see a small lighthouse. The views were great and we filled our memory cards with images. The temperature was brisk as you can see in our selected garb.

The temperature kept dropping as the wind picked up and the sun approached the horizon. Tiffany has convertible gloves that switch from fingerless to mittens and she was using the mittens: when that happens, I know she’s ready to call it a day and flee to warmer environs. As we began our half mile walk back to the car, however, we turned for one last look at the lighthouse. It was one of those times when we knew that if we didn’t turn around again and go back, we’d kick ourselves for being lazy. We’re glad we went back.

It was a great trip. It was the first time Tiffany and I traveled together since our honeymoon, just the two of us. We were uncertain how we would do on the emotional front, but that proved to be a fleeting concern. Skype helped assuage any attachment anxiety with Autumn, Heidi and Claire. My mom came down for the first few days with the girls and my dad joined her for the last few. Our good friends the Barnes again stepped in and helped shuttle the girls to school and take my parents and the girls to see Christmas lights one night. It was easy to escape knowing our daughters were in such good hands.

Our return meant resuming right where we’d left off and trying to make up for some lost effort. Being out for a week emphasized the importance of Claire’s therapy sessions. The eight-day therapy vacation was evident in her tight shoulders and hips. But it was worth it. The recharge we received from the time off was felt equally by Claire. It helped us recognize for Claire that there are times when doing nothing is important.

Claire’s vacation was well-timed as well. We started moving Claire off Baclofen in October, hoping to see that she no longer needed it. We gave it a strong go for about six weeks and at the end of the experiment, it was apparent that Baclofen is helping Claire, particularly with sleep and therapy. The good news is that when Claire went back on Baclofen it was at 33% of what she was prior to our attempt. More important, her limbs are loose again and she’s sleeping better. When we left on our trip, Claire has just finished going through this effort and was exhausted: so it was a welcome break.

Overall, we haven’t seen any monumental, big steps with Claire’s recovery in the last several months. She continues to make progress, though it is getting harder to distinguish between what is new and wishful thinking. We rely on the opinions of others – friends, family, therapists – a lot more now to keep our hope kindled. They see changes more than we do. Of some things we are certain: Claire is seeing better, she’s responding to requests more and eating pudding like snacks each day. We remain optimistic and hopeful that this continues to be just a matter of time before Claire is talking and walking again.

Autumn and Heidi are being troopers. They are sad that their holiday break is coming to a close. They feel a little shortchanged that Mom and Dad were absent for a portion of it and want to extend the break to make up for the lost time. They’re precious girls.

As always, thank you for the continued prayers and support. We understand how much people continue to hope and pray for Claire, particularly when we start hearing that our friends and family are itching for an update. Thank you for your patience and we hope 2012 brings you closer with family and friends.

The summer break is in the wrap-up phase for our household, and we’re only hoping the weather will soon follow suit. Yes, it’s cliche to comment on the weather, but in this case, it would be negligent of me to not mention it at least once: it’s hot. We’re racing toward breaking a record that was set in 1980 for most consecutive days for triple digit temperatures. I think we’ve all gotten sick of it being the “go-to” subject as well every time we step on the elevator. We all hate the weather small talk, but it’s just so compelling right now because we’re collectively exhausted with the heat. I’ve also exhausted this topic and won’t mention it again.

Overall, the summer has been a blur. We’ve had to keep our heads on a swivel  for the last three months, shuttling Autumn and Heidi to camps and Claire to therapy sessions. We’ve tackled a handful of projects around the house in between visits from house guests. And we understand that most of you have had similar schedules. This has been the first summer that we feel was busier than the school year. It has required more coordination and help from family friends based on our new dynamic. Last summer was spent in hospitals and feels like it didn’t exist. We were still in the throes of discovering what our lives would be like going forward. And those lessons become more acute as time continues to pass.

Claire’s continues to progress as well. While Claire’s achievements haven’t been as emotionally satisfying as her first smile and laugh, they are still indications that her body is working hard to recover, relearn and repair. Claire had a second round of Phenol and Botox injections in late July which required some general anethesia and a visit back to Our Children’s House Dallas. She’s been much more loose because of it and further relaxed her arms and legs.

We’ve also seen some marked improvement in Claire’s core strength. Tiffany woke me up six weeks ago in the middle of the night after going in to turn Claire over. We have to rotate Claire in the night to make sure she’s not developing any bed sores: the skin breaks down easily from prolonged pressure. On this night Tiffany didn’t need to turn Claire. Claire had turned herself. It’s starting to happen with more frequency now as well. While turning yourself in the middle of the night can be directed by unconscious activity, we’ve also seen it start occurring during the day as well. Claire is turning herself from one side to the other while awake.

We’re excited to see what’s next after turning and hopeful based on a new phenomenon Claire has demonstrated. It’s also a source of comedy for our family. For those parents that recall the Moro reflex, or startle reflex tests, this will be clear. Recall that this reflex is the response to the sudden loss of support. An absense of the reflex is an indication of severe motor system disorder. Claire has not had the reflex since the accident for obvious reasons: her basal ganglia received the brunt of the injury which controls motor movement. In the last eight weeks, however, Claire has been demonstrating the response accompanied with sudden support loss. Another analogue is when you fall asleep sitting up and suddenly shock yourself awake when you feel your balance start to tip. Throughout the day, Claire will be stable and then, unannounced, fling her arms straight out as if trying to steady herself. This is accompanied with a gasp and sometimes her legs mimicking her arms. We’ve discussed with her doctors and it can be an indication not only of the motor system and vestibular system improving, but also nerve growth. Whenever it happens, it makes us giggle. Whoever is present always helps calm Claire down and reassure her that she’s safe as well as reminding her that what’s happening is a good thing and indicates she’s getting better.

This kind of encouragement has become our common theme. Claire goes through ups and downs. It’s apparent that Claire has good days and bad days. The last week Claire seemed to be a little downtrodden. These weeks also seem to be demarcated with an absence of good quality time with Tiffany: on a busy week where there are a lot of logistics to look after and Claire and Tiffany don’t get one-on-one time, Claire is more irritable and smiles and laughs are harder to come by. That was this last week. Tiffany has the biggest impact on Claire. And when Tiffany and Claire did finally get some time together, it was clear that what was missing. Claire is always eager to laugh with Tiffany and those laughs go a long way.

We’ve been looking into other ways to help Claire based on the funds we received over the last four months. We’ve settled on trying a Neurologic Chiropractor based on some feedback we’ve received. We will be meeting with the practitioner in the next couple weeks so he can learn about Claire and also determine whether he refers Claire to a more seasoned professional or not. We’ll let you know how that goes in the next update.

Claire’s recovery continues in the context of home life. We’re preparing for my younger sister’s wedding in late September. Autumn, Heidi and Claire are the flower girls. Tiffany and I are biding our time and planning for our first vacation since we’ve been married. After 10 years, we’re finally going to try and get away for a week in December. All this and much more as we bide our time, continuing to wait and hope.

I wish I had more to report. Nevertheless, I thank you for your continued thoughts and support. We don’t know how long it will take, but we continue to be optimistic and thankful that there are so many pulling for Claire and our family. May 30th was Autumn’s ninth birthday and marked one year since the accident. We’ve been strengthened since then from the service and love of family and friends. Thank you.

Little birds have been perching on my shoulder the past month and whispering in my ear: “Hey you. Yeah you. Write another blog post. We need an update.” I’ve brushed them off for as long as I could.

Needless to say, we’re going on nearly three months without an update. I apologize for the radio silence. I understand how many people are eager to hear about Claire’s progress. We are grateful, as always, with the support for Claire. We also appreciate the angst that people have shown over hearing about her trials and victories.We have much to report in each category.

Before getting to Claire’s progress, however, I have also been negligent in posting about an event that was held in Claire’s honor in March. My dad’s sizable California family (my grandparents raised 14 kids) organized a fundraiser for our family, a charity dinner that was an unexpected blessing. We were overwhelmed with people’s generosity and sacrifice. It humbled us.

We were also very happy with the timing of the event. It coincided with the biggest news we’d had in a while. Claire smiled. We were aware that it was coming. For a couple weeks prior to actually getting her to crack a smile, we were noticing substantial changes in Claire’s facial composition. Her eyebrows were relaxing more frequently. Her jaw line was more loose. Her mouth was beginning to make different shapes. So for a full week we’d been making fools of ourselves trying to get Claire to smile. Tiffany was on the phone one night while I was taking my turn as the fool. Her eyes got bright and started to sparkle and then the corners of her mouth started to tug. Tiffany rushed in to the room when I yelled “She smiled” and two minutes later was followed by the people with whom she’d been talking, our neighbor’s the Barnes. It put us all over the moon.

That night we made calls to family members adding to our joy. And for the subsequent three days we did all manner of things to get her to smile. But Heidi was holding the ace in the hole. My parents came into town three days after Claire’s first smile. We didn’t hesitate to show them Claire’s new trick. The following Monday, while I was at work, Claire trotted out her biggest act with Heidi leading the way. Heidi was trying to get Claire to smile and chose a rather macabre method of doing so. “Claire, I’m falling down a cliff, ” Heidi’s story begins. This is followed by a perilous fall down said cliff and the requisite squish at the bottom. Claire smiled. Then she laughed.

It started as a little laugh. And nobody was certain at first. So Tiffany encouraged Heidi to fall off the cliff again. The second time it was unmistakable. Claire laughed from her belly, a cute, full laugh. The emotions came quick for Tiffany. It had been over nine months since we’d heard Claire laugh. Both Tiffany and I can clearly remember the last thing Claire said to us before the accident. We were not certain when we hear a piece of her again. Instead of words, it was a laugh. And it brought a tide of emotion. While I didn’t get to see it, I got to hear it moments after the first one when they called me at work. It’s a beautiful sound. We still smile every time she laughs. And we’re bigger fools than ever trying to get her to laugh every day.

Claire is now laughing at least once a day. The first day Claire spent a significant portion laughing. At one point Tiffany discovered a new way of making Claire laugh, to the point that Claire was having trouble catching her breath. After that first day, however, Claire took a break from laughing. Smiling was becoming an everyday occurrence; however, we’d have to wait another week before we’d hear her laugh again. Now we don’t have to wait as long.

The laughing started out with slapstick humor, the gut reaction to something we find internally amusing. Now Claire is laughing at more subtle forms of humor. This has coincided with an increase in Claire’s awareness. She’s much more aware of her surroundings and pays attention to social cues and communication more acutely. She’s also starting to remember things. We can’t determine how she is remembering things: does she actually recall the stimuli or is there something deep seated in her brain that is triggering emotion? We do believe, however, that she is remembering things to a degree. One item to which Claire responds is a viral video she would often watch before her accident called “Kitten Inspired by Kittens” (http://youtu.be/FtX8nswnUKU). Tiffany was talking with Becky one day about Claire and mentioned Claire’s affinity for the video. Tiffany started quoting the video and when she looked over, Claire was smiling. The video is now a sure thing to get Claire to smile and she’s back to watching it over and over.

Claire’s awareness has also translated over to therapy sessions. Claire continues to progress with oral therapy, each week increasing the amount she is able to swallow without coughing. She’s also started working on reaching out and touching objects in PT and OT. Her efforts here are very labored. Claire has not been able to do much in the area of building up her limb strength. Her core muscles are getting stronger due to horse therapy, yet her arms and legs still lack coordination and purpose. This makes sense since the primary area of her brain that was injured controls motor movement.

Despite the slow progress with her motor movement, Claire’s doctor expressed a degree of confidence that Claire’s cognitive faculties have been protected. This is consistent with Claire’s awareness and response to humor as well. This means that the bulk of our effort will continue to be directed at the physical side of things.

Her mouth is one of those areas. The oral therapy has been making Claire’s mouth more responsive and we’ve been noticing a more concerted effort to make new noises. We temper our hopes, but are eager to see what Claire can accomplish as we ramp up her speech therapy. We want her to talk so much so she can express herself again.

The key takeaway over the last two and a half months is that Claire continues to make progress. There have been some seminal events, yet progress remains slow. But it’s still progress.

Autumn and Heidi are doing well. Heidi is now enrolled in violin lessons and Autumn is back at piano. Both girls are registered for two camps this summer. Both are going to golf camp, while each has her own special camp: Heidi is going to science camp and Autumn to theater camp.

I enrolled Tiffany in a book club, so she now has to get out of the house at least once a month. After a year lay-off, I’m finally getting back to studio work. Eiger is a puppy. And he’s good at being a puppy. So we’re all puppy tired. But he’s a good dog, loving and sweet.

I hit on the high points, and I’m sure to have missed a lot of the details. I’ll be watching the comments section for any questions and update through there. Thank you again for your support and hopes. We are happy to share this news with Claire’s army.

What a month it’s been. Time has escaped us on all fronts and there’s no indication the exodus will abate. My hope is that we will soon get to stop borrowing from our sleep reserves as we settle into a new rhythm and routine. The good news is that everything I have to report is good news.

I’ll begin with some clarification I should have included in the last brief post. We brought out puppy home about a week ago, on February 12th. We did not adopt him at the time of the last post. We drove out to Sulphur Springs to make our reservation selection. Now, having had him with us for a week, we are very pleased with our choice. His name is Eiger (pronounced Tiger without the “T”), named after one of the most famous (infamous, in some circles) Alpine peaks in Switzerland. It’s a little bit of his heritage mixed with my interests and an ode to one of my favorite authors, Jon Krakauer. He’s taking to the name well.

When we first met Eiger he was about five pounds. He came home with us clocking in at 15. He’s a gentle puppy, loving and relaxed (most of the time). We’re bemused by his classic Berner characteristics. His aloofness makes us giggle: we try to coax him to do some tasks and he simply watches us, entertained. So far, it’s been fun.

But it’s a lot of work. Eiger is my new baby. Unlike with our daughters in which I found I was not producing milk so I was useless throughout the nightly feedings, I do have the ability to carry a puppy outside at 3:00 AM for bladder relief. So I am getting the full experience of waking up every two to three hours. It’s tiring. I’ve been tempted to strap a diaper on him on more than one occasion.

Aside from puppy trials, our schedule as booked up in other ways. Following Claire’s oral evaluation, we increased the number of therapy sessions from three each week, to four and then five. Tiffany now has a session outside of the home every day of the week. While it’s a lot, it denotes a confidence from her therapists that Claire can handle more aggressive approaches.

Of particular note has been her work with a new oral therapy. As I mentioned in the early January post, Claire can handle certain types of food and eating more will help her improve her mouth muscles. But we also need to focus on strengthening her esophageal muscles. The solution is electric. And I don’t mean that in the colloquial sense: we are strapping electrodes on her neck and electrically stimulating the muscles. I describe it using infomercial analogs: if you remember the ab belts that were advertised on TV that work your abs while you’re sitting on the couch with a beer and potato chips, then you understand the technology. The electrodes cause Claire’s muscles to expand and contract, with the hope that the muscles necessary for swallowing and speech will strengthen.

We’re in the very early stages of seeing some results. While Claire’s swallow reflux is improving, what has been more exciting is her new vocal variety. In the last week, Claire has started making new sounds. Last night we were sitting with her and she began adding an “m” sound before her standard cry. Her therapists also noted the changes this week and believe that she is making initial attempts to speak. Our in-home nurse told Tiffany yesterday that she thinks Claire is struggling to say “Mama.” While we remain cautious, our hopes have taken a shot of adrenaline this week.

But the hope boost has not come from the vocal variety alone. Claire was laying on her side on Wednesday watching TV. I looked down at her as she flexed her legs in and out in normal fashion. She fell off her pillow at one point, obscuring her view of the TV. I gently teased her for falling off the pillow. I left her in the position, however, because she had ended up on her belly which is a good therapy position for her. The Claire started rotating. It was slight at first. She’d move her legs and her body would shift a degree. At this point she wasn’t aware of what she was doing. But we told her that her leg movement was causing her to rotate and that she should try more. She did. This is one of the key steps in motor recovery: Claire needs to begin recognizing the causal relationships between her body and her intentions. When she recognizes that she can use her leg to make her move and she can direct that effort, it’s a big step. By the end of this initial escapade, Claire had rotated herself 210 degrees from her original position.

We are excited for a number of reasons, but there are some critical few that make us happy. The first and foremost, is the effect this is having on Claire’s motivation and perspective. It’s been such a long push already for our four-year old fighter. These changes are material for her: she recognizes the improvement. And we’ve seen the change in her disposition. In fact, we believe that she’s working hard to smile again. It makes us happy to see how much strength she’s taking from the recent developments. The second reason is the impact it has on our family as a whole. It’s difficult going through what feels like a drought of measurable, significant improvement. Our collective spirits are lifted.

These recent developments are bolstered by the news we received at Claire’s last OCH Dallas check-up. Claire’s vision has greatly improved and her responsiveness is marked. Claire’s primary OCH doctor noted that she believes that Claire’s cognitive functions are largely protected and that the biggest hurdle is her motor ability. This is consistent with what we’ve seen in the MRIs and what we’re now seeing with her improvement. Overall, it’s been a month filled with welcome news.

The rest of our month has been filled with Colorado friends and family visits. Our family got some quality time with our friends Esther and Gordon, complete with photo shoot. We welcomed both sets of our parents to the home in January and February. We spent Super Bowl Sunday with good friends and the Spring soccer season is ramping up. All in all, we’re content right now.

Like the rest of the country, we’ve dealt with our share of weather and gone through several chords of wood in the meantime. The snow’s been nice, but we’re definitely ready for Spring and the additional changes it brings. Thank you as always for your thoughts, prayers and support. Enjoy your weekend!

We drove to Sulphur Springs, TX this morning. The east Texas snow had receded leaving a landscape of mud and debris; however, the drab atmosphere melted away when we reached our destination. It was puppy picking day!

We spent about an hour with the puppies. The girls were all smiles and giggles. Puppies clambered over each other to get to the girls, kissing their faces and nibbling their fingers. The girls were tickled. Claire was a little overwhelmed, shocked into silence. She was very aware of all the new stimuli and didn’t know how to react. So she didn’t. She was wide eyed the entire visit.

 

 

We narrowed the choices down to three and then two, before making our selection. There were a few factors that pushed us to one over the other, however, the overriding factor was the affection the puppy showed toward Claire. The attached picture of Claire includes the puppy we chose. The breeders call him Hummer. We’re still debating on a name.

 

 

It was an exciting and fun day.

 

A theme is starting to emerge: the lag time between posts is growing. I’d like to blame it on the holidays, but that won’t work.  I anticipate that an equilibrium will come soon, but unless things change soon, the post following this one is estimated to arrive near the end of February. I’ll see what I can do to make sure that doesn’t happen.

That being said time has not allowed for posting. My work responsibilities have started to pick up and I’m back to booking shoots with clients on the weekends. Family time takes up the majority of the remaining time and preparation for the Spring running season is well under way. While busy, keeping everyone updated is still important, though it follows a long list of higher priorities. Thank you for continuing to keep Claire in mind in between posts.

Your thoughts have not gone unrewarded. Claire continues to make progress. The biggest development since the last post is with Claire’s oral therapy. Claire has a swallow study conducted right before Christmas. The study consists of four consistency stages: honey, nectar, liquid and pulp. Claire passed three of the four. She aspirated the liquid. That was to be expected. Consider what we have to do when we swallow. First, we are usually aware that something is being placed in our mouth and we have intent to swallow. Secondly, we have the ability to maneuver the food or drink into position that gives our esophagus time to protect our windpipe. Claire can’t do this with liquids. Thin, watery liquids move very quickly to the back of the throat. Claire doesn’t have time to notice something new in her mouth before it’s making a rampant march down her airway. This condition is labeled as a delayed swallow. A delayed swallow, however, does not preclude her from consuming the other consistency types. Because they do not move as quickly, Claire recognizes the substance in her mouth and is able to swallow without leakage into her airways. This was great news.

We were so encouraged because this milestone yields more therapy options. The therapists have asked the doctors to approve a special oral therapy involving food that is designed to strengthen her esophageal and mouth muscles. This means great things for eating, and it also has corollary effects on speech effort. We have not started the new therapy yet because we are waiting on doctor approval. But it was good news and we’re excited to expand her therapy palette.

In addition to Claire’ s therapy changes, we’ve also been noticing changes with Claire’s vision. She is more alert, her eyes more active. Claire picks up on movement at the corners of her eyes more and is tracking objects regularly. She is also watching TV with more purpose and attention. For the last three months, her gaze would wander more. She is fixating on things with greater consistency now. Tiffany got Claire a set of glow-markers for Christmas and that has helped her exercise her vision further. We’re enjoying the changes.

The New Year brought a new school with it as well for Autumn and Heidi. This was their first week and we couldn’t be more relieved with the administration and teachers. They have been great and made extra effort to make our girls feel welcome, assuaging the shock that comes with such an abrupt change.

Our house was full over Christmas. My parents and siblings all came down to Texas. Only one member was missing: my brother-in-law to be, David, couldn’t join us for the holiday as he balanced work and time with his family. We look forward to seeing him soon. I was excited on Christmas Day because I finally got to announce our family gift. Many suspected it and many were right: we’re getting a puppy.  The litter was born on December 22 and will be ready to come home in mid-February. We’re adopting a Bernese Mountain Dog. While everything is going according to plan so far, the jury is still out on the name. Nevertheless, we’re all excited! We get to pick our new puppy next week on the 15th.

All in all, the holidays were enjoyable. It was fun having family so close and packed in. And as we enter into the new year, our calendar is already filling up again with out-of-town guests. It makes us happy.

We hope your holidays were equally enjoyable. Thank you as always for your thoughts and prayers. We will continue to keep you updated on Claire’s progress.

A lot can happen in a month. I was surprised so much time had passed when I looked at the last update. I’m sure many of you are feeling the same way now that the ubiquitous Holidays are upon us. I hope you are taking time to relax and catch your breath. Events continue to lumber on for our family.

First and foremost, Claire continues to make progress. Claire has improved her muscle control and is responding to commands with increasing frequency. Her therapists noticed as well and requested another session with her each week. Therefore, Tiffany is in the process of applying for her taxi driver’s license since she is driving around the Metroplex so much already as chauffeur.

So stress relief will come this week: it took four months, but Claire was finally approved for an in-home nurse. We have mixed feelings. We are glad to finally have a response; however, the coverage is for much less than what we originally anticipated. Based on Claire’s needs, we had been told that we could expect between 60 and 80 hours of care each week: we got 20. We’re glad to have some because it will help Tiffany as the primary care provider; yet we are disappointed it wasn’t a little more. We will be completing the necessary requirements Wednesday and will start interviewing nurses later this week.

Autumn and Heidi have both put on their thespian hats the past few weeks along with countless other elementary kids across the States. Autumn has a lead part in her school play and has been regaling us with lines and off-key songs. I’ve taken to wearing a mouth piece so I don’t grind my teeth because I’ve got one of her songs in my head while I try to sleep. I know it’s a problem because I too can sing the songs and miss the same notes she does. After the play is over, I hope they invite all the parents up on stage so we can perform our version. I’m sure we could. While we groan (just a skoach) about it, we’re enjoying it. But Autumn’s biggest fan is Heidi. Heidi actually makes requests for some songs.

Heidi has also been coming into her own right on stage. When roles were handed out to the kindergartners for the Thanksgiving play, Heidi drew the turkey straw. It was a character that would have to express so much. Contentment, joy, shock, fear, solidity and anguish were a choice few of the emotions the turkey would endure and express for the play. I tried to explain method acting to Heidi. She listened. She concentrated. And her reply was, “Dad, I’m going to be wearing a box shaped like a turkey.” Duly noted. This may not have been her break out role; she did well nonetheless.

The theater work has done well to distract them from what we all know is coming: Autumn and Heidi are leaving their school at the end of this week. With the move to Coppell brings transition to Coppell schools. Thus far it’s been harder on me and Tiffany. I anticipate it will set in on January 3rd for the girls, the day before they head back to class. Please keep them in mind as they begin adjusting to yet another change.

We have a lot of time before then yet, and we’re looking forward to it. My side of the family is migrating south for the winter to spend Christmas with us. We’re excited to have everyone in the house. We have grand plans, knowing full well it with devolve into a series of shenanigans and mishaps (that’s the real plan anyway). I’m excited about our Christmas day announcement for the girls. I don’t know what I’m going to do with my time when I’m not able to say “I know what we’re getting for Christmas and you don’t” to them anymore. They’ve started ignoring me. I don’t know why.

Our hope has not dimmed with Claire. We continue to pray and work toward the same goal, that Claire, walk, talk and lead a full, independent life. There  is a lot of room for discussion in that last statement and what it means, but we mean it pretty explicitly, without any caveats for what a “full, independent life” means. Please continue to pray and hope for the same.

We hope you enjoy your time with friends and family. Please take the time to understand just how valuable they are to you. Merry Christmas!

I learned about another Coppell family today that suffered their own tragedy earlier this year. Todd and Tara Storch lost their 13 year-old daughter Taylor while on vacation in Colorado. I hope many of you have already heard their story and have been keeping their family in mind. For those of you, like me, that are hearing this for the first time, I encourage you to read their story. In short, Taylor was an organ donor. Because of this, her family was able to hear Taylor’s heart beating again after she’d died, in the body of a recipient. The woman carrying Taylor’s heart is a mom. Taylor’s gift wasn’t the hardware keeping her alive: it was the extra years the mom received to watch her children grow. The Storch’s set up a foundation in Taylor’s name called Taylor’s Gift. The website gives you the opportunity to become an organ donor in under 90 seconds. It’s easy. It’s fast. Please take the time to fill out the online form.

Claire’s adjustments to the new house have been improving. Her reflux has moderated. Her disposition has been calm. Aside from a nasty upper respiratory cold that took hold early this week, her progress has all been forward. The past three weeks have been encouraging for us and we hope for Claire.

One development in particular has bolstered our resolve. Claire is responding with more consistency to commands. We decided to start testing whether she can understand a request and deliver a response. This sounds simple enough, however, it is dangerous area, both emotionally and scientifically. Tiffany and I have been acutely aware of our tendency for confirmation bias: we want to see improvement and want to make sure we’re not reading false indicators. So were are very careful to design a communication system with Claire that doesn’t lead to false positives. The difficulty with this is that as Claire gains additional control over her muscles, she still battles the remnants of neurological storming that cause her limbs to twitch and spasm involuntarily. For example, if we ask Claire a question like “Are you hungry” and we assign a finger squeeze as the affirmative, we have a low confidence level on whether or not a finger squeeze really means “yes.” We venture that we perceive more pressure when she squeezes after we ask a question, however, we can’t be sure because she squeezes at varying pressures without the question. So we need a signal that is more definitive.

We decided to try an arm raise with Claire. We settled on this because the arm raise is so infrequent and it takes a significant amount of effort on her part. It also provides the opportunity to test whether she is really answering a question or not because we follow up the question with the command “Now put your arm down” which is equally difficult  as raising it. The system is cumbersome because it is a series of closed ended questions. It does, however, give a vehicle to communicate simple needs and wants. It’s working. We are confident that the system operates well the majority of the time. Tiffany and I tested it together first last weekend when Claire was upset. We explained to her that she needed to raise her arm high when she wanted to answer “yes” and then peppered her with a series of questions. When we asked her if she wanted to move to the floor, her arm went up, and when we told her to put her arm down, she complied. When we moved her to the floor, she stopped being upset. We were very encouraged.

We’ve had multiple opportunities to try out the system over the last week. It isn’t foolproof, but it works most of the time. We are still wary of creating false positives, however, we are hopeful that Claire feels a little more understood than she did a week ago.

Now what this means for her brain activity is still undetermined. Is she able to process requests and commands? It appears so. Is she contemplating them on a higher cognitive level than base needs and rewards? I don’t know. I certainly hope so and the father in me thinks she is operating at a higher level. Only time will tell.

This progress has been very welcome as the emotional war continues. The end of this month indicates the six month horizon. It is an arbitrary time line, particularly where young children are concerned, yet it lurks in the back of our mind. We continue to wonder why she hasn’t made more progress. We battle those thoughts reminding ourselves that she continues to move forward with no change in pace. We continue to miss her personality, the little things that always made us smile. And it’s taking its toll on everybody.

Autumn and Heidi have been watching old family videos with Claire as therapy. I am thankful that they continue to express how they are feeling about the past six months. Autumn will mention she misses the way things used to be and we nod and tell her that we miss it too. Within minutes of expressing herself, however, Autumn is back at Claire’s side discussing what game they should all play. The other night they decided on Candyland. The girls made sure Claire won. Then she won at Sorry. They’re good girls and they love their sister.

Thank you for keeping our family in mind and praying for Claire. We maintain our hopes for Claire, that she will soon smile, crawl, walk and talk. Your support helps us when we are tired and forlorn. We hope the coming holidays are spent with family and friends that show you the same love you have shown us.