Spring 2015: Update and Request

18 Apr

Today’s post has two pieces: one a quick update on Claire and the other a request to consider contributing to a local youth cause (Link here, and more information later).

The Texas allergy season has taken a toll on the general population and we have not been spared. The last month has been particularly challenging for Claire due to her lack of motor control. Sitting upright, walking around and being active has a strong impact on our respiratory functions particularly when our ears, nose and throat are under attack by airborne particles. Claire struggles to manage the runny nose, watery eyes and swollen airway tissue despite the reinforced arsenal from Flonase, Zyrtec and Albuterol. The goal becomes to manage as well as possible and become experts in pattern recognition. Like being a new parent who is able to recognize the type and nature of a baby’s cry, we’re able to recognize the type and nature of coughs and whether it will prompt a more vicious fit that ends with Claire losing her lunch, or something she can manage on her own. Heidi and Autumn both can recognize when Claire needs help now and are usually first to jump up and help her, patting her chest, or leaning her forward so she can manage her swallowing.

We have another check-in with the ortho doctors this week to evaluate Claire’s scoliosis. Her pulmonary functions haven’t deteriorated too much, so the specialists are unlikely to make a surgery recommendation. We’re more interested to hear about Claire’s growth since the last visit. Claire has nearly outgrown her new chair and sitting in her molded seat does not seem comfortable. So getting a new chair, or adjustment will be on the docket and hopefully will enable her to sit upright for longer periods of time.

Aside from the seasonal discomfort, we don’t have many complaints. Claire continues to be in good spirits and we continue to make efforts to see her smile or laugh each day. Our conversations with Autumn and Heidi have evolved over the last year as they’ve gotten older and started to form more and more of their own opinions. It’s fun.

We’d also like to ask you consider the following giving opportunity.

This link will take you to a GoFundMe page for a local high school project that is meaningful to us for obvious reasons.

Here’s the summary from their page:

“Many of the special needs students at Coppell High School have impairments or syndromes that cannot be cured. Their disabilities may impair speech, motor control, vision, and processing; issues that can often make it challenging for them to do everyday simple tasks. Their bodies develop differently from others and an easy task, like flipping a light switch, might take weeks or months to learn. The goal for our team – Disruptive Innovation, is to create a device with current technology that will help improve students’ skills faster while helping the teachers track their progress more efficiently.”

We understand you have many choices where to make donations and would ask you consider donating to this cause. We find it compelling for two reasons: first, we have a fair amount of confirmation bias due to our family structure and circumstances; and second, and more important, it’s an investment in STEM kids that are eager to develop meaningful solutions and healthcare innovation.

Will this lead to a major breakthrough or a major therapeutic device for impaired kids like Claire. Not likely. But does it contribute to foster the opportunity that one, two or three of these kids goes on to drive a major breakthrough? Yes. Does it encourage curiosity, to work through failure, learn from it and drive the innovation that will help Claire and kids like Claire in the future. Yes.

We have as many as 10,000 followers for Claire’s and our family’s journey. I’d like to imagine that if we were able to get just 5% of you to give $5 or $10, we could help make a meaningful dent for this team’s fundraising goal.

Merry Christmas, 2014

18 Dec

Merry Christmas from Dallas!

It’s been a busy year and we’re all doing well.

Claire’s therapy has continued each week with a focus on physical, occupational and speech. We have stopped horse therapy due to Claire’s size (she’s now eight years old and its much more challenging to hold her on a horse). Claire’s routine is fairly set now with Botox/Phenol injections every four-six months to manage her tone. She’s on a six-month orthopedic cycle to monitor her hip displasia and scoliosis: so far we haven’t seen any further degradation in each, so we’ve averted surgery for the time being. Despite her motor control and speech constraints, Claire has found ways to communicate and make us understand what she wants.

Our family is enjoying time together and adjusting to a new work schedule. I joined a consulting firm in August and my travel schedule keeps me out-of-town on a more regular basis. Tiffany and I have been able to get out more due to help from our in-home nurse who has been gracious enough to dedicate some of her hours to an occasional Friday evening. Autumn and Heidi are both doing well in school and with extracurricular activities.

The last year has given us the chance to catch our breath since Claire’s accident and brought opportunities to give back some of the charity we received from others. We are looking forward to volunteering more the next year and letting Autumn and Heidi see how they can shape their perspective to impact other grieving families.

We wish you the best this holiday season and hope it brings you time with friends and family!

Family Christmas 2014-1218-Edit

Update: Tuesday, 24 September 2013

24 Sep

I’ve been traveling back and forth between Dallas and Colorado: I’ve had the chance to receive a lot of updates about family and friends from my parents, and it reminded me that we need to provide an update as well.

In short, our family entered a period of transition in late May. For context, my career is spent in corporate development which involves determining how companies grow which involves buying and selling other companies. In May my current employer announced it was being sold to another company. While I was involved with coordinating the sale, I have decided to not go with the acquiring company. We have instead made it our goal to try to make a transition home to Colorado. So we have spent the recent past focused on trying to get home and closer to family.

We are motivated to be at home due to the past three years and more for future developments in our family dynamic. Claire’s recovery continues to change and additional hurdles have been presented. First, Claire has developed spinal scoliosis. Claire is a growing girl. Her skeletal structure continues to expand, yet the muscles to support her bones remain untested and weak. Tools like the stander focus on bones density. The stander is also a great tool because it’s a passive instrument: we can place Claire in the stander for a prolonged period of time and monitor her comfort level while gravity does the work. Working muscle strength and endurance requires active attention (despite such late-night infomercial promises from electrical stimulation ab belts). Horse, occupational, oral and physical therapy all focus on stimulating muscle tone; however, there is a limit on the time Claire can sustain. And at the end of the day, Claire’s bones have grown faster and her muscles can’t keep up.

The result has been a case of scoliosis. Some of Claire’s vertebrae have pivoted causing her left rib cage to distend. She will have to have some vertebrae fused to correct. We will start monitoring her pulmonary function to make sure her breathing isn’t labored. We will not proceed with the surgery unless complications or health risks associated with the scoliosis arise. Since she is sill growing, we’d like to avoid a surgery like spinal fusion as long as possible.

We also learned of additional orthopedic issues. Claire has been more spastic on her right side than her left. This has contributed to some problems with her right hip joint. The socket at the hip which holds the top of her femur has become loose and the opportunity for her right femur to become disjointed has presented itself. She is not in pain; however, this has limited her ability to bear weight. The solution is another surgery where the doctor will remove a piece of bone from the femur to build up the hip socket, keeping the bone from slipping out. Like the scoliosis surgery, we are waiting and doing what we can to stabilize the joint. This includes a medieval looking brace for her legs and hips. Claire doesn’t like it. We don’t either.

Other than this disconcerting news, Claire is doing well. She took a break from horse therapy through the summer and returned a couple weeks ago when temperatures were more moderate. We’ve seen improved strength from the therapy and Claire has impressed us with her head control of recent. We’re all proud of her and never tire of her smiles.

Autumn and Heidi have been in school for a little over a month now. Autumn is playing another season of soccer while Heidi is preparing for her first eligible participation in the Nutcracker ballet. They continue to pamper their little sister and make her feel included.

On the whole we’re doing well as a family. Transition periods always take their toll; nevertheless, we remain positive and vigilant for a move back home to Colorado.

Another Long Break

6 May

It’s been nearly a year since the last routine disruption for our home: as a reminder, nearly a year ago, we were making another visit to Medical City which ushered in four months of testing and multiple hospital stays. This has now been the longest stretch of uninterrupted stasis since the initial incident. It makes me a little nervous, lest we get too comfortable.

There is little to report since the last update. Claire took a therapy break through the holidays. She resumed therapy in January, however, the setting was now our home. We have shifted away from outpatient therapy sessions. While Tiffany and Claire were both reticent to leave their Baylor Grapevine therapy family, the surplus time and effort has paid dividends.

The emotional toll continues to be levied on a sporadic basis. Autumn and Heidi are in good spirits, growing fast and keeping busy. Their emotional awareness contradicts their age: they experience things deeply and are acute to social dynamics and their role in them. We have frequent talks about their perspective and how their experience has uniquely changed their view of the world. We’ve used the phrase before and we’ll use it again: our girls are learning how to deal in an environment ambivalent or ignorant to the walking-wounded. These feelings are infrequent and deep-seated: this lends to an unpredictability for when and how they will materialize, so we take them as they come. We’re proud of the girls and their desire to support each other and embrace living.

I hesitated to write this last paragraph because alone, taken out of context, it betrays our sense of life in general. We have plenty to report that is good. Yes, we have been molded and shaped to a permanent degree by an event  we would change if given the chance. Yet our lives are full and we enjoy our time together.

We’ve reached a point with Claire’s progress where she continues to move forward and at a measured, glacial pace. We’ve tested some different technologies, including Dynavox. Dynavox is an assisted communication tool. It is based on line-of-sight. The patient is able to make a choice by locking on to a picture between two discrete options. We tested the tool for three weeks before sending it back. Claire’s therapists submitted a report to determine whether Claire will benefit from the tool. While we have some skepticism on assisted communication devices, the Dynavox seemed to work with Claire. We’re hoping she is approved so we can continue using the tool.

Claire returned to Our Children’s House Baylor Dallas this last week for a long-overdue visit with Dr. Raji. Claire is now six and has been growing as you’d expect a young girl to grow. Her weight has increased and we’ve observed an increase in spasticity the last few months. Raji increased Claire’s Baclofen dose to combat the spasticity. Raji also expressed some concern over developing sclerosis with Claire’s spine. Our therapeutic means to combat include increasing her strength and stretching with more vigor. We will return to OCH in a couple weeks for another round of Phenol and Botox injections.

We have settled into a routine. Our hopes are undaunted. We continue to work with Claire in hopes she will regain a significant degree of mobility and speech. We have been monitoring the developments around neural stem cell research. No defensible clinical data has emerged yet; however, there are some meaningful trials taking place right now stateside that will have some impact on clinical applications.

Thank you again for your continued support and thoughts. I will submit another update should anything material come around. Otherwise, look for another update in a few months when there is more to report.

A Six-Month Recap (in fewer than 1000 words)

13 Nov

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!

Update: May 27, 2012

27 May

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 First Post in 2012

2 Jan

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.

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