Tuesday, September 28: Update

It’s been almost a week since the last post. And that week has been very busy. Aside from having family in town, we began a process that normally takes several months: buying a house. We’ve been passively considering a move and wanted to make sure Claire had enough time to settle in at home before seeking more space. Our lethargic search became more urgent last Wednesday when we found a house in Coppell. We made an offer this evening and expect to discuss a counter tomorrow morning.

We don’t want to give too many details right now because we still have to come to terms with the seller. If we do get the house, however, we will be asking for some helping hands with the prep work on the home. The house needs to be made move-in ready after closing: every wall needs to be painted (the current owner has a vivacious personality that comes through in her paint choices) and we have to lay carpet in the upstairs. If you like to paint and your schedule will allow, we’d be grateful for the help. But we’ll hope and see if we even get the house in the meantime.

The mad scramble with the house was simply layered on top of Claire’s therapy. We feel we’ve hit another plateau and we’re fighting through. We’re finding that the battle against physical exhaustion is becoming more acute with each passing day. Sleep deficits are piling up and the daily grind is taking its toll. Claire is developing bags under her eyes because her sleep isn’t as sound as it was when we first came home. As her body continues to adapt, we play catch up with new techniques to alleviate her discomfort. It can take several days of experimentation before we hit on something that works; and before we know it, something new pops up and we’re experimenting again. All of us would like a little bit of respite, and we wonder when it will come. It’s one thing to be tired from a hard days work with Claire. It’s another to be tired because we can’t replenish our energy through the night. It’s adding up.

Despite the malaise, we’re happy to be together as a family. We hope that we can come to amenable terms on a home and get some more space for guests, family and friends alike. We thank you for your continued support and thoughts. We look forward to sharing good news on multiple fronts soon.

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Wednesday, September 22: Update

The first signs of Fall are beginning to show. Temperatures have had a sustainable drop in north Texas (mid-80s!) and the first leaves are starting to change. The new season heralds the return of some family members this week. I picked up my sister, Bryanna, today and we’re picking up Tiffany’s parents tonight. The house is full once more!

Bryanna’s arrival today was a surprise for half the girls in the house. Autumn and Heidi didn’t know she was coming. Neither did my mom. It’s been a surprise two weeks in the making. It worked. It took a solid 20 seconds for my mom to process that Bryanna was standing in front of her when we walked through the door. She was stunned. The waterworks soon followed as my mom played see-saw with her emotions. Giggling and smiles was intermixed with crying and tears. It reminded me of when we brought Autumn home: like Autumn, my mom is so overcome with emotion she would rather escape everyone’s view and gather herself before addressing the situation. It’s fun to watch. And funny.

While my mom and Bryanna caught up, Claire observed. We’re seeing this behavior with greater frequency now. Claire appears to pay closer attention to the events around her now. When we enter into her field of vision, her eyes regularly track to our faces. They focus and hold the subject for longer periods. If we speak to her, she’ll watch our faces with greater interest. It’s very minor and slight, however, we notice the difference now compared to a few weeks ago.

Cutting Claire’s Chlonozapam dose in half at nights has also seemed to normalize. We’re seeing increased movement with her right leg now too. The Chlonozapam acts as an anti-anxiety medication: it was prescribed when the Atavan and Methadone weren’t doing an adequate job regulating her neural storming. While it helped with her posturing when she needed it, it’s not as imperative that we use it now.  We think it was contributing to the limited extremity usage on her right side as well. Now that it is a lower dose, we’ve seen a significant increase of muscle use on her right side. This set off a new set of challenges, however, we think we’ve got solutions for those now too.

We seen the biggest help come from the horse therapy sessions. We’re very happy that we’re on a twice a week schedule now. Claire got to test drive her new helmet on Monday. It was a little heavier than the helmet she used before, but she flexed her neck muscles and held her head firm. Muscle fatigue started to set in near the end of the session, a sign of how hard she’d been working. She slept the whole way home, just to make sure we were convinced of her effort.

We are grateful for your words of encouragement and support. We are looking forward to more positive updates and news. Enjoy the rest of your week!

Saturday, September 18: Update

This week was all over the map. Some good, a lot challenging. We felt we were making small gains in the sleep department; this week was another set back. We wish we could pinpoint a single cause. We can’t. We suspected it was the reduced Chlonozapam dose. We’re not as confident it was the culprit now. What we do know is that we’ve spent the last four nights making slight changes to Claire’s sleeping practices, hoping that one will work and Claire will again sleep soundly through the night. At 2:30 AM last night we think we discovered a method that will work. We’re rolling it out in earnest tonight and , fingers crossed, we hope it gets Claire the sleep she needs.

Thursday’s therapy session went well and we were sent home with a goody bag. Claire’s long-awaited custom boots were inside. We don’t have to use our hybrid hiking boot-splint boot solution anymore! The custom boots work like a charm: no chaffing or skin breakdown and they keep her feet in a natural position. While her left foot has improved the most and falls to a natural position most of the time, her right foot still breaks in slightly. These boots will help alleviate the stress on her foot and lateral calf muscles. We’re very happy to finally have them.

Claire continues to improve her neck strength and is holding her head up at more aggressive angles and for longer time periods. We do a number of exercises on the large fitness ball. Her focus and determination are apparent and reflected in the degree of fatigue she shows when she gets a break. We are very proud of her work ethic and spirit.

Autumn and Heidi made cookies with Nana today. Autumn used the cookie project to cap off her earlier efforts. Autumn has decided that her favorite actress is Claire Danes. Autumn drafted, edited and finalized a fan letter for Ms. Danes today. Autumn hit on a number of points, however, her most potent inquiries were about Ms. Danes’ marital and education status. I am tasked with finding the correct address to which to send the letter. I’ll make it tomorrow’s project. My reward will be cookies.

Aside from contacting celebrities, baking cookies and exercising Claire, it’s been a relatively uneventful weekend. We hope your weekend is bringing you needed rest and relaxation. Thank you as always for your support. Sleep well!

Tuesday, September 14: Update

After a month and a half at home, we seem to be developing our routine. Claire’s early complications are manageable and her schedule more predictable. The girls are in full-swing at school and we have a mostly regular schedule. We fight to keep things in perspective, especially when it comes to the marginal value of each new change Claire shows. Think of it like your first dollar: moving from zero to a dollar gives you much more enjoyment than moving from $10,000 to $10,001 dollars. But it’s still a dollar. We were vigilant to watch for Claire’s early changes because everything was new again and portended our hopes of a great recovery. Today’s changes carry the same hopes, however, they are sometimes diminished in a sea of previous changes. It’s an important balance for us to strike.

We have seen noticeable differences with Claire over the last week. Her eyes have become more active and track faster to sounds and light. The jury is still out on what she can see; but we are confident that her brain is processing more aggressively. My hypothesis right now is that Claire locks silhouetted areas much easier right now. When we are backlit, Claire locks onto our faces in greater earnest. She may not be able to pick out our features yet, but I do think she is seeing our shape. When subjects are flat and evenly lit, Claire’s eyes wander more, looking for higher contrast interests. It’s still an improvement.

We started weaning Claire off her final dose of Chlonazapam this week. Yesterday was rough: the withdrawals made Claire irritable and her stomach upset. Today was much different. Claire was even-tempered and didn’t show any of the signs she exhibited yesterday. After the Chlonozapam is out of her system, we will start working on the final Seroquel dose. After this is complete, Claire will be on a single medication around the clock and one sleep aid at night. It’s odd to look at the multiple paged prescription document we came home with and realize a two medication reality is on the horizon. We hope things go well and we don’t see a reversion to  increased spasticity or agitation.

Tiffany and my social lives have been very busy of late. We had dinner with Claire’s Medical City doctor and his wife on Saturday night. It was awesome. We didn’t realize how much good it would do us. It did a lot. We capped off the weekend at another family friend’s house. Homemade beer, popcorn and cake were on the menu. It was a nice send off for the weekend.

My Aunt Grace joined us for a couple of days and we loved having her here. She helped with the girls, fed us and chilled out. Autumn and Heidi are still talking about her visit and eager to meet their second cousins after hearing stories. We hope to see her soon.

Thank you again for all your prayers and support. I plan to post some pictures with the next update. Thank you for continuing to follow Claire’s story, especially as the posting frequency diminishes. We hope to share continued good news soon.

Thursday, September 9: Update

We went helmet shopping yesterday. After two trial sessions with horse therapy, we were confident enough to buy Claire her own equestrian helmet. Furthermore, we decided to double down on horse therapy: Claire will have two sessions each week beginning this Monday. The horse therapy has been a great addition to the rehabilitation tactical battery. We’ll take all we can get.

September has brought all kinds of forces to north Texas. Thunderstorms, tornadoes and cooler temperatures are the least of our concerns. The perennial allergy season has darkened our doorway. We never like it and this season it’s more menacing. Heidi, Claire and I have been the most effective. Despite a vanguard composed of Zyrtec and Flonase, Claire’s respiratory system has taken a beating; yet it has not gone down. All the junk in her airways remains an upper respiratory nuisance, and hasn’t descended further to become something more menacing. We’re thankful for that and continue to check and monitor her oxygenation levels and lungs. So far, so good.

Claire’s chair – a Lovesac – has been awesome. She relaxes very well with the chair, especially compared to the alternatives we were using. It’s also much easier to keep her elevated in the chair while she eats. We’d been using our wedges to elevate her while she ate; however, Claire’s core strength increased to the point she was able to easily roll off the wedge. The new solution is much improved.

When Claire is not using her chair, it’s not unoccupied for long. Heidi and Autumn like to sneak their way onto the chair. I’ll steal onto it too from time to time.

Claire has shown small improvements over the past few days. Her neck muscle strength has improved. She is holding her head up with more consistency and control. Claire’s therapists were very pleased with her head control today. Tiffany ventured that today’s therapy session was the best to date. Claire was calm, cooperative and attentive. The therapists remarked that Claire worked very hard. Since that’s all we’re asking of her, we were very pleased as well.

We’re happy to see the end of this short work week tomorrow. We decided to start some projects early.  Heidi wanted to learn some more photography principles today, so we set up the camera and did some portrait work with a ready and willing subject. We felt we captured the essence and mood of the moment.

We hope you enjoy tomorrow and have a great weekend. Thank you as always.

Labor Day Weekend Update

The triple digit weather in north Texas has seemed to finally broken. Our resolve has not. Shaken, yes, but not broken. The daily battle to remain positive, patient and persevering continues to wage; with each passing day, it becomes a little more difficult. We find ourselves hoping to see something new, something that will bolster our resolve and give us strength for the next day. We were warned about these dry spells of little improvement, times when it seems Claire’s recovery would start to plateau. We knew they would come; we were still ill-prepared. When Claire is making progress and reclaiming pieces of her former self, our operational load is bearable: we work hard through each day knowing that we’re seeing improvement. During these times of seeming little to no improvement, we begin to wonder if were spinning our wheels. “Why isn’t she getting better?” we ask. Bill Murray said it better than I can in What About Bob: “Come on. I’ve come so far. I’m doing the work. Gimme, gimme, gimme. I need. I need. I need.” It’s a roller coaster. And it’s the worst ride I’ve been on and I want to get off. But I’ll stay on as long as Claire has to ride it too. I’ll stay on it for the rest of my life if it means she gets better. I wish it were that easy and transactional.

Since we hit this slower period, we’ve evaluated whether there are additional strategies we could employ. Last night I dreamed that Claire pushed up on her arms into a crawling position. I woke up from this enjoyable imagery thinking about what was missing from Claire’s routine. One thing I feel has been lost over the last few weeks is the testing of Claire’s limits. For the first few weeks after we got home everything was still new. We were trying new exercises and stretches and Claire was working hard. She was uncomfortable and she was challenged. I think we’ve retained the first part of that equations – Claire is still uncomfortable – but we lost the second part: the challenge is missing. I’m borrowing a page from kinesiosology and musculature: variety is better for muscle-building. Exercise routines typically hit a plateau period as the body becomes adjusted to the routine. The body requires a shock after two to four weeks of routine in order to increase metabolic process efficiency and become stronger. We’ve found that Claire’s body is still sore from general atrophy and the brain shock, but we’re not seeing real progress in muscle strength. Her arms have good range of motion, however, they are very weak and cannot support her body weight. We have no reason to expect that they would after an injury like this. But it’s our job now to get them back into shape. They won’t with our existing routine. So we took steps to augment that routine today.

Claire will start doing more challenging exercises this week. We bought a peanut ball this weekend so Claire can strengthen her arms and shoulders under her own weight. We’re also going to begin incorporating more strength building exercises for her legs and core. We’re going to take it slow enough to avoid strain, but push enough that Claire gets a workout. We hope that with the increased strength will come additional control and purpose.

Aside from those changes, the weekend was uneventful for Claire. My dad arrived yesterday for a short visit and that has been the weekend’s highlight. We’re sad that it’s such a short visit, but happy to see him.

We hope your weekend was wonderful. We thank you as always for your support. Enjoy your short week!

Thursday, September 2: Update

While the weather in north Texas has changed, not much has shifted since the last update. Claire continues to work hard day in and day out. Her efforts are paying off in absolute muscles strength: she doesn’t direct a lot of purposeful movement, but when she doesn’t want to do something, she’s built up formidable strength to resist. Her abs and legs are remarkably strong and her trapezius muscle is ripped. When we place Claire on her stomach now, she can hold her head up for prolonged periods of time just by tensing her trapezius. While this is impressive compared to what she could do two months ago, she still struggles to raise her head from a relaxed position. All in due time.

After six weeks of back and forth with the manufacturer, Claire finally got her plush, memory foam bean bag today. It was a happy day for us all. Propping her up with pillows has become a more difficult task: Claire has used her aforementioned muscle strength to shift weight unpredictably. So placing her on the couch is not an option anymore. We ordered the bean bag so that we can prop her up safely and ergonomically. And now we can. It’s pretty cool and a lot bigger than we expected. We like it.

Tomorrow is the second day for horse therapy. It’s quickly becoming my favorite day of the week for Claire’s rehabilitation efforts. I only have one data point from last Friday, but Claire’s temperament was so amenable after the session, I’m hoping it’s a trend beginning.

The rest of the family continues to charge forward, though everyone has a hint of fatigue in their shoulders. I often wonder when we’ll have a chance to recuperate some of the sleep. energy and resolve lost over the last three months. I can’t imagine when. For the time being, I feel that every minute is an opportunity to learn something new, work on Claire’s motor or cognitive skills, or try a new tool to get her further down the recovery road. I know it’s not a sprint. But I can run hard and fast for a pretty long time. I’ll keep doing so until my body makes me stop. I don’t see that happening in the foreseeable future.

Thank you for your prayers and support. We hope the coming Labor Day weekend treats you well.