A lot happens in a year…

Over a year ago we were still settling into our new home and getting used to being back in Colorado. We still miss our Texas friends and family – though we are pleased to be spared from the Dallas July heat – yet have been happy to see many of them here in Denver over the last two years. There is much to report with Claire: while we’ve been settling our mundane day-to-day, there has been a lot of changes for Claire, some fun, others unsettling. Major surgeries, enhanced ability to communicate, new diagnoses, new meds, and unexpected hospital stays are the high level items that define the last year for our family.

Claire’s had her first of two surgeries in January. Hip reconstruction was necessary due to a series of compounding drivers: Claire doesn’t get the necessary weight into her frame to promote healthy skeletal structure, her spasticity continues to stress and strain her bones, and her advancing scoliosis limits the time she can spend upright. These have contributed to her hip sockets degrading. Our care team elected to reconstruct her hip socket by removing bone slivers from her femur and bulking up the socket. This required an ostectomy: the heads of both femur bones (the portion that sits in the socket) were severed, a portion of the bone was removed, and then the heads were reattached with brackets and screws.

This necessitated a three-day stay in the inpatient unit at Children’s Hospital Colorado. Those three days were focused on pain management so we’d be confident Claire would go home as comfortable as one could having just had their largest bones cut in two. The next three weeks were the most taxing for Claire and the family, both physically and emotionally. This was the cute recovery phase, marked by sharp, piercing pains as the her body worked to heal. The second three weeks were a slow uphill climb to recovery with fewer sharp pains.

One of the decision points through this was what type of cast to put on Claire. The two choices are a Spica cast or a Hip Abduction (soft) cast. Because of Claire’s size and mobility, we opted for the soft cast. There were costs and benefits to each. With the soft cast, it is more comfortable and can be removed for easier cleaning. The tradeoff is that it is more flexible, allowing small micro movements while the bones heal: and Claire felt these movements. It was also more difficult to clean. On day three back at home, Claire soiled the cast and we elected to remove the cast for cleaning. The ensuing 45 minutes was a war zone and no feelings were spared. Working to immobilize certain joints and moving others so you can clean up your 10 year-old child is a horrible experience. Claire provided a soundtrack of screams as we worked to get to a point where we could hold her, comfort her and cry with her. It’s these recovery struggles that are preying at our minds a we prepare for the second surgery of the year.

Claire is scheduled to have her scoliosis correction surgery in mid-September, again at Children’s Hospital Colorado. Tiffany was operating on feedback she had received that the scoliosis surgery is more taxing than the hip surgery, until three weeks ago. Because the back is easier to immobilize and has fewer articulation points, the recovery should be less grueling. Tiffany was relieved to hear this because she was dreading a worse experience than the hip surgery. While that is better news, the truth is the scoliosis surgery itself is still higher risk. Because of the hardware involved and the size of the operating field, the risks of infection are some of the highest for surgical procedures. Infection occurs in 10-20% of patients depending on the quality, reputation and expertise of the hospital and surgical team.

Children’s Colorado recognizes the risks and has developed a high risk care pathway for each scoliosis patient: this pathway requires meeting with multiple specialties to assess what needs to be managed before, during and after surgery. Claire is cleared on all fronts except one: her weight has been falling the last few months.

Bouts with allergies on a regular basis have caused Claire to struggle with nutrition retention: in short, when allergies kick in, Claire can’t keep anything down – food or liquids – for 36-48 hours. We’ve discussed Claire’s limitations with managing her own saliva secretions: she forgets to swallow, she gags herself and triggers a vomiting session. When allergens start swirling, it make the secretion management much worse. Because of Claire’s ulcerative colitis, vomiting once causes an irritation in her stomach for those 36-48 hours and it rejects whatever nutrition we supply. This caused an ER trip recently due to dehydration and a spiking fever, so getting this managed is critical.

Furthermore as a result of the nutrition battle, Claire dropped more than six pounds since March. We started a couple new medications to combat: one calms the stomach and the other moves food through the digestive tract faster. The result is Claire has started putting weight back on over the last month. So fingers crossed we will keep the surgery date in September.

There are some additional medications we have introduced in the last year to the digestive ones mentioned above, due to one primary issue: Claire’s epileptic seizures have increased in strength and frequency. Another EEG was ordered for Claire at the end of 2016: the results came back that she was having near constant seizures through her sleeping hours. Before introducing a new psychoactive med, we decided to pursue a personal trial with CBD oil. We used Charlotte’s Web for an 8 week period before deciding that it was not impacting her seizure activity at the rate it needed to forgo additional neural damage. We do believe, however, it is having a material impact on managing some of Claire’s Ulcerative Colitis flares.

Two weeks ago Claire had blood taken and her White Blood Cell count was low. We have removed her ulcerative colitis meds over the last two weeks because her care team believes they may be causing the low count. To date she has not had any flares. We hope that between the probiotic (VSL #3) and the CBD oil, her colitis flares are managed. Time will tell.

Back to the epilepsy episodes: Claire is now on a small dose of Kepra. This followed an initial five-week attempt to use high-dose Valium to remedy the seizure activity. It didn’t work. We are in the middle of the experimental phase with Kepra working on getting the dosing right and evaluating if it is having the right therapeutic impact. More to come.

That constitutes the majority of the clinical report with Claire. I include this information for many of our readers who have followed because they have family that share a similar story to Claire’s. If you have questions about any of these items, leave a comment and we’ll be happy to provide more detail.

The last portion of this update is about Claire’s enhanced ability to communicate through technology. We got a new Tobii Dynavox machine about 6 weeks ago. We used to have a Dynavox (pre-Tobii merger) and did not get good use from it. It was unreliable and sketchy. The new one is awesome. Claire is still learning how to use it, but she’s getting better and better. Autumn and Heidi have assumed the role of making sure Claire has sassy, feisty and current phrases and slang to use. If Tiffany does something silly, it’s likely that Claire will add her “OMG” as commentary.

One of our favorite early stories with the Dynavox (we call it her “Talker”) involved one of her therapists. After a long therapy session, her therapist asked her if she wanted to say goodbye. Claire’s response: “Go away please. I’m tired.” Then Claire closed her eyes and went to sleep.

All of us are enjoying Claire’s new avenue to communicate with us. We are thankful she has a voice again.

The rest of the family is doing well. Lots of change to accompany Claire’s year, but nothing material to warrant complaint. We’re just happy to be a family and share our time together and with friends.

Thank you again for your continued support for Claire. We hope you and yours are doing well.

Update from CO: May 1, 2016

Six months going on seven. We returned to Colorado in October last year and as much as we’d like to say we took our time to settle in, there has been little patience for accelerating activity across every aspect of family, professional, school and creative life. It’s likely our eyes are bigger than our stomach and we will shortly have to prioritize what we spend our time doing because there’s just not enough of it for everything.

Here’s the quick summary of events since the last report-out.

We settled in temporary housing while looking for our new Colorado home at a time when home prices in the Denver metro area are experiencing unprecedented appreciation. Within two weeks of landing, we fell in love with a neighborhood: greenbelts, charming architecture and the fall colors made quick work of any resolve we may have had to look elsewhere. We started stalking the neighborhood, trying to catch glimpses of home interiors under the guise of trick-or-treating on Halloween, among other desperate measures. No houses came on the market for five weeks, to our dismay.

We collaborated with our Realtor on a mailing that canvassed the neighborhood: the result was eight immediate responses each of which would have been sufficient to get us into the neighborhood. The ninth response was our undoing. When I saw the online listing, I knew we were done for: as soon as Tiffany saw the house, her first response to me was “We’re going to buy this house.” We moved in a week before Christmas. And we love it.

Settling the family back in to Colorado life was run in parallel to the house search. Rather than rip the girls out of school in Texas, and then potentially uproot them again once we found a house in a new district, Tiffany homeschooled the girls through the end of 2015. My sister was able to partner with Tiffany as well to handle the curriculum and instruction. Her contribution was invaluable and not only benefited the girls, but helped Tiffany retain some semblance of sanity.

Reestablishing Claire’s network of care, we knew, would be a tall order. We had to set aside the quality of care we left behind and the network of nurses, physicians, therapists and friends that had grown up around us since that fateful day and just focus on the care utility to making sure Claire’s continuity of care was maintained. Despite that we were always cognizant of the care relationships we had to leave behind, relationships that had evolved to be much more than just care delivery.

Ben.

Amy.

Pam.

Jon.

Becky.

Sylvia.

Rollin.

Annette.

Tina.

Raji.

As I write this, I couldn’t get past the third name before the lump in my throat overtook me. Too many people to name – my utmost apologies to those I have not mentioned. Too many souls who have touched us in ways we can never fully express our gratitude.

We can not nor will we ever be able to replace them or replicate what they brought to our lives. We miss them.

The list of names that invest in our family, however, does continue to grow. Tiffany has two new nurses – both shockingly younger than us both which is a new experience we are not yet accustomed to. Most of Claire’s clinical care is now through Children’s Hospital Colorado which has been phenomenal – albeit, I may not be the most objective person to appraise the care.

There have been some net gains. Claire has been able to experience some new types of therapy. Music therapy is one bright spot. These new opportunities come at the hands of a different regulatory environment at the state level. Claire is not the only one affected. Tiffany has been able to get more nurse support hours in Colorado than she could in Texas. This is opening up new doors for our family.

We opened a physical photography studio space in early April. Our photography work in Texas was all on-location: Tiffany was unable to get away and focus on running the business, so it didn’t make sense to carry the fixed costs with a studio. With the greater nursing coverage, Tiffany is able to get away during the week and focus on herself a little more.

Autumn and Heidi are both settling in as well and taking advantage of new opportunities. They started at their new schools in January. The transition had some bumps both on the academic and social side. The Texas curriculum is ahead in some areas and behind in others than Colorado. We invested some midnight oil early on to make sure the girls could catch up as quickly as possible on the academic side of things. They’re both strong, dedicated girls and the struggle only furthered their character and ethic.

The next step for both is in community sports. Heidi is starting to take up tennis. Autumn is joining the community swim team. It’s a community we’re happy to be a part of and glad the girls will grow up with it.

With all these new areas of growth, we see new levels of complexity. And with this complexity, come new risks, threatening some of the things we value, at the expense of growth. I feel the pull of a more simplified life at times. One where we are all in the same place more frequently.

And that’s the struggle: how do we make sure we continue to get the quality time together, demonstrating the balance between activity and recuperation, and not allow us to be swallowed up by inertia? The struggle hit me today.

Since Claire’s accident I am much more susceptible to being blind-sided. The smallest, most unexpected things can shock me, reduce me to my cravings for simplicity. The big shocks are expected and as a community, I think we all expect that the big shocks, the things that rattle a sometimes tenuous foundation, force us to face what’s most important, to reconcile how we may have let inertia overtake some of the most basic, important values in our lives.

It’s the little shocks that still unsettle me. Today I was watching a classic movie with Claire, The Black Stallion. The plot had finally built to the last race scene. The main characters were in the spotlight. The world watching. Expectation and pretense could easily overwhelm. And when the race was at its height, the characters retreated to the memory of a simpler life. A life where they were seemingly happier. A life they missed. A life they would never get back.

It hit me. All I could do was reach out and touch Claire. I miss her. I miss the dreams I had for her. Tiffany, shortly after the accident, would sometimes mention how much she wanted to just steal away with Claire, so simplify life and just focus on serving Clair’s needs. I felt a piece of that today. But not to steal away with her. To steal away the accident. To go back. Back before the accident when life was simpler. Times when it was just our family, when life seemed simpler, where you don’t fully understand how much your healthy, running, joyful children sustain you.

Today when I could calm myself enough, I leaned down to Claire to tell her how proud I am of her. How much I loved her. While cheesy, I told her she was my little Black Stallion. Tenacious. Loyal. Free and wild.

We wish we could go back. We cannot. So when I feel the complexity starting to threaten the new life we’ve carved for ourselves, the little shocks remind me of what I need to continue to fight. Taking joy in each other. Not letting the world swallow us up with its expectations. Never giving in to inertia.

So I’m going to finish this update, then go and hold Claire. Because she’s still here. And the simple act of holding her is sufficient for now.

As always, thank you for indulging my thoughts and continuing to keep Claire in your own. Thank you further for being the crowd that sustains us through the big and little shocks.

Image of Claire is pre-accident, April 2010

Grapevine HDR-314-Edit

Our Claire

Big Changes

We’re moving back to Colorado!

We weren’t looking for a transition and Tyler was pleased with where he was at his current employer; however, an opportunity came along to get us home to Colorado. After a few months of interviewing and weighing the options, we accepted the position and will be back in Colorado before the holiday season kicks off.

For those of you in the Dallas Metroplex, this means our house is on the market. And if you – or someone you know – is looking to move into the Coppell ISD, leave a comment below and we’ll send you an email with a link to the listing.

We’ll publish more details once we complete the transition!

561 Raintree Cir, Martin-105

Spring 2015: Update and Request

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

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

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

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.