Our Claire Journal

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.

We’re in the house. It was official last Saturday, the 30th. Another great group of friends helped us move the last vestiges of apartment living into the house. And the joys of home ownership were fully realized.

I need to take care of the most important business before getting into the updates, and it’s the right month for it: thanks giving. The overwhelming support has continued over the last three weeks as we made the transition to the home. Our minds boggle knowing we closed on October 15th. In a mere two weeks, the house was move-in ready and immaculate. There are so many people who helped and they have our gratitude. They helped make the house our home.

Because of all the help, we’ve been able to get settled much more quickly than anticipated. The two that have had the hardest time adjusting are Autumn and Claire. Autumn’s first night in the house was a sea of tears: she missed the apartment. Autumn is a caricature of change for the rest of us. What we often feel inside and hide, Autumn displays in all its glory. Tears, sniffles, red eyes and wailing accompany Autumn’s emotions. No amount of discussion or rationale appeases her: she just needs time to get used to the new world. And when all is said and done, Autumn adapts to change faster that most of us, in part because she deals with her grief so dramatically in one fell swoop, and then moves on.

Claire’s difficulties have been more prolonged. Claire’s reflux returned with a vengeance for the first few days and is only now abating. We had to install a whole house air purifier to eliminate microbes and mitigate the possibility of airborne infection for Claire at the house. The air is clear, the environment clean; however, the volume of change has upset Claire’s stasis. She has started to calm down again and better days are returning.

Claire continues to move forward. Her eyes and focus are getting stronger week by week. She Her therapists have been so pleased with her progress that they recommended adding a day of speech therapy back into Claire’s schedule. Claire is following commands with much improved consistency and this let’s the speech therapist work with greater efficacy. We’re excited for her progress and while we still wish it was faster, we are glad it’s still forward.

Claire greeted us in a new way this morning as well. It’s been several months since we’ve seen Claire stretch and she did it this morning. Her legs were curled up, she stretched them out and then brought them back up to her chest. Stretching this way is a voluntary movement and we’re excited to see more purposeful effort like this. It seems the past two weeks have had a greater volume of these small steps than normal. It helps fuel our hope.

 

It’s been a couple of months in the making, but tonight was capped off with more family news: my little sister Bryanna accepted Brian’s proposal. Recall that Brian came out here with Bryanna while Claire was still at OCH. His support for my little sister and us the past several months has spoken volumes. We’re all excited to extend our family further and proud of Bryanna. We wish we could be with them to celebrate tonight and look forward to a celebratory glass of wine when they come out in December.

 

We hope you’re enjoying the season change and look forward to seeing many of you over the coming weeks. Thank you for your support and prayers.

Things should be settling down again in the next two weeks once we’ve transitioned to the new home, and I’ll be more diligent at making posts again. For the time being, however, the blog is getting shorted on attention. It’s odd to love back over the last five days since we closed: a lot has happened.

 

I’ll start with Claire. Because of the Friday closing, Claire didn’t have her normal horse therapy session. She resumed on Monday with Tiffany as a saddlemate again. Claire improves with each successive lesson. Claire showed us just how much stronger her trunk is on Monday: Claire held her body upright with little support and sat back in the saddle rather than flop forward. It’s fun to watch her focus when she’s on the horse: her pupils close down and her eyes fixate. We’re seeing this focus in other areas as well.

Some friends who has not seen Claire in a while commented on her improved focus last Friday. Claire tracks to movement as it enters her vision now. Her eyes are more purposeful and she uses them to identify sensory sources. Tiffany has noted that Claire has little trouble finding her now, which is much different than a month ago. We feel that her awareness is becoming more acute and her sensory skills are improving.

 

Yet we have still had some hard days. Claire’s vomiting issues ebb and flow. They are much less frequent, but when they show themselves, it makes for a difficult day. Our plan is to be more aggressive with her nutrition plan after we get settled into the new house. Claire is still on a majority formula diet; once the move is done, we’re going to start experimenting with more real foods and bolus feeds as opposed to pump feeds. We hope that helps remove the volatility from her stomach.

 

There is a lot going on around Claire and that may be contributing to her nervous stomach. After we closed on Friday, we got to work on prepping the home. Jon and I were at the house until the wee hours of the morn’ removing the popcorn ceiling on the second floor. It was messy work. Delirium started to set in around 11:00 PM when we had to get the stairwell ceiling scraped. Since only one ladder leg could fit on the stairs, Jon pretended to be the other while I climbed up and scraped the ceiling. Dangerous, yes; but what’s a whole home remodel without a little intrigue?

 

The intrigue continued into Saturday. We had about ten people show up to help prep the house for this coming Saturday’s work. The task list included removing wallpaper from the kitchen and bathrooms, sanding down walls, priming the ceilings, removing molding, taping the windows and floors and installing the garage door opener. We accomplished most of the work; however, new items popped up. The virgin run for the garage door opener started well but ended tragically when the top panel on the door buckled. The previous owner had rigged the door to operate manually, but the load from the mechanical opener was too much. So we’re getting a new garage door. Next, the wallpaper in the kitchen didn’t come off as cleanly as we’d have hoped, so all the walls needed to be floated. After another late night, it was difficult to get up on Sunday.

 

I took Heidi and Autumn with me Sunday morning. They explored while I floated the kitchen walls. Tiffany showed up mid-morning and we all started taking turns watching Claire while the rest primed the ceilings and walls. We were making good progress and at the end of Sunday, we were on track for this Saturday’s work. When I say on track, that doesn’t mean the work was done professionally. The work was good enough, however, we knew that we would have to go back and redo some work on the house once we were moved in. But we had a deadline to keep.

 

After a zombie like performance on the soccer field, I came back to the house Sunday evening to work on a borrowed paint sprayer that had quit on me. The owner of the sprayer is a local Coppell contractor that had lent me the machine to expedite work. His arrival on Sunday night to help with the sprayer ended up being something much bigger. My friend Brian and I followed Larry around the house while he shook his head and picked apart the work we’d done. By the end of the night, Larry had convinced me to let his crew come in and do it right.

 

So here’s the deal: I’m paying for the parts. Larry is supplying all the labor. For a week. In a house that is being completely redone. I was at the house last night and the work is immaculate. The crew has removed the deck from the backyard completely. They floated nearly every wall in the house. They’re retexturing the walls today. And the house will be painted by the end of the week. (Don’t worry those of you who are coming out on Saturday: we have much more to accomplish than painting).

 

Tiffany and I have been overwhelmed. We are at a loss for what Larry, his crew and Sylvia Dendy are doing for us (Sylvia is the one that called Larry and is feeding his crew this week, and I suspect doing much more that she refuses to divulge to me).  We are trying to think of ways we can show Larry how much it means to us, while also learning how to be humble enough to accept his gift. One way I can give back is to share the story. Larry does exceptional work. If you are doing any work, I encourage you to call him. He’s honest, straightforward and skilled. His company is called the Home ER and he can be reached at 214-914-1609. I’ll be posting before and after pictures when all is said and done and you can see his work firsthand. It’s awesome.

 

Needless to say, we are excited to move into our new home. We are looking forward to seeing so many of you this Saturday. It’s going to be fun. If you are planning on coming and need the address, please reference the Facebook page or email me at tyler.tmartin@gmail.com for it.

 

Thank you for your continued prayers and support. Please continue to pray for Claire’s progress and that it moves forward. We are getting another round of Botox injections next Monday and we hope that helps alleviate some muscle irritation in her legs. Talk to you soon!

No, I haven’t forgotten about you. The last eight days have been packed and I’m having to compartmentalize and prioritize my demands: school and the blog have been sidelined, subservient to the needs of work, family and the house. I apologize for another delayed update, and I regret that the next may be equally delayed as house demands accelerate. Just know that you are on my mind and I am eager to get back to you with updates.

We’re five days away from closing on the 15th. The preparation for move-in begins the next day on the 16th. That day is the most unpredictable right now. We did a walk through of the house yesterday and discovered that the kitchen wall treatment was done over wallpaper. So instead of sanding down the walls in the kitchen, we’ll be pulling down wallpaper before re-texturing and priming. The same goes for the upstairs bathroom. This makes things unpredictable because the job could be easier than we originally planned, or more formidable. At first blush it seems that the kitchen wallpaper will come off with relative ease; only time will tell.

We’re aiming to do a handful of things on the 16th: paint the ceilings, remove the moldings, sand down the non-uniform treatments, remove the popcorn ceilings on the second floor, re-texture the necessary walls and prep the house for painting the next week. It seems like a lot and it is; however, I think we have the right mix of manpower and equipment to get it done. It all depends on the number and magnitude of problems we run in to that day. That being said, if you were wanting to help on the 23rd and were not going to make it, feel free to join us next Saturday instead. We’d be glad to have you. We’ll be going from 9:00 AM to 9:00 PM.

We’ve been running the project with multiple workstreams and everything seems to be converging in our two bedroom apartment: while we’re packing things in boxes, more things are arriving from Amazon with supplies for the new house. It frustrates Tiffany, but I get a little giddy at all the new toys. Similar to when I repaired the standing chair for Claire, I like to take each of my new tools out of the box and admire them. I’ve stopped short of naming them because that would just be over the top. With each new box, the house starts to take shape in my mind’s eye. I’m excited.

We shared our excitement with the girls yesterday when we took them to see the house for the first time. The girls had one criterion when we were looking for a house: stairs. Success. The house qualifies. The stairs, however, were soon relegated to second tier status after they saw their room. While we walked through the house making notes, the girls would pass in and out of our field of vision, quietly whispering and making their own plans. Autumn has the habit of making grandiose plans without consulting the necessary stakeholders, so I am curious to hear what she has cooked up with Heidi.

Claire’s first visit to the house wasn’t as successful because she much preferred to sleep. She had to wake up earlier than she wanted and let us know that she didn’t appreciate it. Papa, fresh off a plane from Colorado, held her and that helped calm her disposition. All in all it was a good visit and the whole family is excited to move in.

The house preparations were punctuated with our normal routine. Claire’s horse therapy session on Friday went well: Claire continues to strengthen her core muscles and her ability to hold her chest up. Tiffany also got to ride on the horse with Claire this time. She smiled the whole time.

We haven’t seen many significant changes in Claire of recent. The steps are small – sometimes they feel nonexistent – and she continues to move forward, albeit at a labored pace. The slow progress coupled with packing the home has been a vicious combination. Claire hasn’t know any home except the apartment. Claire was brought here after she was born and it’s where she sustained her injury. The emotion of this place closes in around us as we begin taking pictures down from the wall and putting memories into boxes. It’s been trying. We never know what we might find in the back of a closet that reminds us of the lives we led just four months ago. It weighs heavy on me and Tiffany. It will be hard to leave, no matter how good the house is for us.

We thank you for your continued support and prayers. We are looking forward to seeing (and meeting) a number of you on the 23rd. Enjoy the rest of your weekend!

October 15. Closing date. We bought the house. And we’re very excited.

It’s been a whirlwind week. Financing. Negotiations. Carpet. Paint. Scheduling. We’re trying to run a number of processes in parallel and it’s a lot to keep track. But we have had help. My mom has watched the girls while we research projects and the Barnes have helped organize the schedule to get us into our new home. The plan is to move in on October 30. That leaves two weekends to prep the house.

We will be painting the entire interior of the house on October 23rd. The day after closing, we will be sanding down some walls, re-texturing and prepping the house for primer and paint. We have a handful of other projects and if you are inclined to help, we’d love to have you join us. We’re planning on the big workday being the 23rd. Food and equipment will be provided (and an excellent workday soundtrack). We have a deck to remove, foliage to extract, walls to paint, windows to seal and pizza to eat. If you’d like to join us, please email me at tyler.tmartin@gmail.com. If you are a friend of Tiffany’s on Facebook, feel free to message her there and we’ll send you an invitation to the Facebook event page.

Needless to say we are beside ourselves with excitement. The neighborhood is great. The house is cozy. And we’ve got fantastic neighbors. Thank you for all the kind words and prayers you’ve shared with us since we mentioned the house earlier this week. We look forward to inviting you into our new home.

I will post a more substantial update tomorrow about Claire and her progress. Thanks again and sleep tight.

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.

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!

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!

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.