Friday, 18 February: Update

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

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

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

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

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

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

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

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

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

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

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

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

32 thoughts on “Friday, 18 February: Update”

  1. How wonderful to see Tiffany and Heidi having such fun on the trampoline! And Eiger is a cutie pie. Looks like he will be a big dog. Don’t even think diapers, Tyler, or he’ll never get trained! I love your sense of humor.

    Claire’s progress, on so many fronts, is very exciting news. Won’t you rejoice the day she says “Mama” and smiles at you! Is she still getting her horse therapy? Love and prayers, Dodie

  2. Great update – so glad to hear good news! We’ll continue to lift Clair and your beautiful family up in prayer. May she continue to improve every day towards total healing! Love you guys and love the pics! So fun! Eiger is adorable!!

  3. What exciting news about your puppy and especially Claire! We love hearing the updates about your entire family. Particularly enjoyed the pictures…you have a gift for photography.

    Kelly (and the gang at 21st Century Dental)

  4. WOW!! That is all such exciting news! Thank you for updating us all. We continue to pray and watch God do exciting miracles in His time.

  5. Woohoo! So thankful for this good news! I had actually thought about commenting today that we “needed” an update. We’ll keep the prayers coming! Bless you guys!

  6. It’s great that Claire is doing such a great job. She’s a strong little girl and we all want her to keep on improving. You are always in our prayers πŸ™‚

  7. Bless you and thank you God for Claire. Hearing her fight and struggle to recover gives me hope and encourages me to fight and struggle. Yay Claire!

  8. Thank you for the update. The pictures are beautiful. We continue to pray for Claire and your family every night.
    God bless you.

  9. Praise the Lord for the healing that is taking place in Claire!!! So happy to hear of the good news for her and your family!
    God is so good.
    May His face shine upon you!

  10. Little miracles continue to pop up when you least expect them — and what miracles they are! Good for Claire and for you, Tiffany, Autumn and Heidi who are working so hard every day and night. Your efforts are certainly paying off! Eiger is precious and, I’m sure, a wonderful addition to the family. It’s always a treat to hear from you. Your updates are uplifting!

  11. Thanks so much for the new post…We’ve been thinking of you all and wondering how you’re doing. Love the pictures : ) And even more, we love all the good news about Claire! We rejoice with you in all that the Lord is doing. He is so amazing.

  12. Claire’s progress report makes me so happy for you all!
    On my next visit, I am afraid Eiger is going to win all… And I mean ALL my affections!
    Congratulations on such positive changes… I have a feeling this Spring is going to be wonderful for your family.

  13. So good to hear about Claire’s most recent progress. I know that lifts your spirits like nothing else. And even better that she is realizing it herself and continuing to push forward. It’s also good to hear how the family is settling in with Eiger in the new home. Hope the girls are enjoying their new schools and meeting new friends. I enjoy these updates and appreciate your sharing them with this extended care community.

  14. i understand that life is busy for you… but i do miss your regular posting. you are such an eloquent writer (and a sweet photographer, too!) and it’s always interesting to hear about claire’s goings on and how the rest of your family is doing, too.
    just know that there is still me… praying for all of y’all in tennessee. hope spring brings the promise of brighter tomorrows!

  15. What an encouraging update! So glad to hear how wonderful everyone is doing! The changes in Claire are so inspiring and show God never stops working miracles πŸ™‚ I enjoyed the pics as well…I miss those girls so much! We are looking forward to meeting our own Claire (Eva Claire) in just a few months…we hope you don’t mind us using such a special girl’s name.

  16. I am so happy to hear all the good news!! Thanks you so much for sharing with us! Thoughts and prayers are still with your family! πŸ™‚

  17. Such a blessing to hear about Claire’s progress. I’m excited to inform my friends who still ask about her and your family. I will continue to keep you all in my prayers.

  18. I am so happy to hear all of your great news! I continue to pray for Claire and your family every day. I love the photos. Your new puppy is adorable and I’m sure a great addition to your family. I look forward to more good news in your future posts.

  19. Just read your newest post and I am so excited to read about the milestones taken! Your journey is being covered with prayer by our family and it is such a blessing for US to read your updates. Hope to read even more soon. Love you all!!!!

  20. We were driving up a mountain the other day listening to Hillsong Kids worship music–something we hadn’t pulled out since last summer. When my youngest, 4 1/2 years, heard Super Strong God come on, she said, “This is a song for little Claire!” I don’t even think she remembered the words from last year. This comment came out of nowhere. We hadn’t talked about Claire much since your last update. I teared up thinking how God speaks through little children and continues to put you on others hearts, and how he wants to encourage you. Here is a you tube link to the song:

    Bless you guys!

    1. Thank you for sharing. That is very sweet! I will definitely have Claire listen to the song. Tell your daughter thank you for thinking of Claire!! Very sweet!

  21. Tyler and Tiffany – love the updates about the new puppy! I am graduating in May and will soon be a real deal physical therapist! I will be doing a pediatric residency program and hope to help out more little kids like Claire. She has made such an impact on me, and I continue to follow her story through your blog. I am giving a presentation for my advanced pediatrics class on Pediatric Brain Injury and I was hoping that I could use a few of your wonderful photographs from the blog in my presentation, to show some of my personal experiences? I wanted to ask your permission first. Please let me know if you have any issues with me sharing them with my classmates.

    Keep up the blogging. I love to hear about Claire!

    Brita (from OCH)

  22. Claire has been on my mind today. I am still praying for her and look forward to hearing how she and your family are doing!

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