Wednesday, August 4: Update

Claire had a good day today. We diminished her food volume today even more than we planned because Claire’s stomach was still a little unsettled. She still received a healthy amount of food, however, it was a little less than we plan to give her long-term. ‘Long term’ is about four or five days right now. We are constantly re-assessing how well Claire is handling her food and each day’s schedule because things change hour to hour. Yesterday is a good example. Claire hadn’t shown any signs of feeding trouble throughout the day. She was on her final feed, getting ready to call it a wrap; next she was over my knee gasping for air. Watching her while she feeds has become our big time consumer now. But until we feel we’ve got a handle on what she can tolerate, we will continue to observe her for the slightest changes.

Today’s semi-normal schedule was punctuated with an enjoyable visit with the Damoffs. We met George and Jacob today. Both Tiffany and I were all smiles when we met Jacob. I’d been eager to meet him since Jeanne and I started exchanging emails. Both Tiffany and my mom have read Jacob’s story, but I haven’t been able to pick up Jeanne’s book because of the emotional burden. I was hearing bits and pieces about the story from them and decided to visit Jeanne’s image library dedicated to the book. It was Jacob’s smile that encouraged me the most. He was happy. He was the same today. And he had the same encouraging effect on me that his pictures did.

George and Jeanne have become our mentors, without us explicitly telling them. They’ve been on this path for 14 years. They share the accumulated knowledge and wisdom from those years without reserve. We are the richer for it. We look forward to seeing them again soon.

We tried a new bedtime routine tonight with Claire that went very well. Claire has stayed up for a couple more hours after she gets her meds for the past few nights which is different from nights previous: Claire had established a pattern of falling asleep within 45 minutes of receiving her meds. Tiffany and I were a troubled with the new pattern. I’d check on Claire multiple times and each time her eyes were wide. I was also seeing emotion in her eyes. I felt like she was expressing some anxiety and pain. It seemed like the meds were calming her down physically, but her mind was still active. I believe that Claire is very aware right now, and the idea of leaving her in her room, wide-eyed and alone was causing me a lot of discomfort. She may be calm on the outside, but she seemed to be nervous on the inside. So tonight we kept her out of her bed for longer. We brought her into our room so Tiffany could cuddle with her. Claire began relaxing on her own. Her eyes started getting more heavy and her body let down. When we laid her down to bed 30 minutes later than normal, she seemed more assured and ready to fall asleep.

It was also therapeutic for us. We haven’t had a lot of time to just relax with Claire. From the time she wakes up to the time she goes to sleep, she has a full schedule. It’s not about the time quantity with us because she gets loads during the day. It’s more about just holding her and making her feel safe and helping calm her nerves. It’s a routine we will continue because it does such good for all of us.

We will continue to work on her feeds tomorrow and hope that today is a harbinger of a good schedule to come. We thank you for praying for Claire’s recovery and hope the rest of the week treats you well. If you’re in Dallas, try to stay cool. For the rest of you, be thankful you’re not in Dallas.

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15 thoughts on “Wednesday, August 4: Update”

  1. Tiffany & Tyler –

    I am so happy to hear that you have found a great “mentor” couple to help give you support, encouragement and guidance during this. How great is that that God provided that for you!!! We will continue to pray for Claire and her feeding schedule. I am glad that you guys figured out this new bedtime routine. How heartbreaking to think of Claire calm physical but nervous/scared on the inside. You guys are amazing parents to pick up on that. Enjoy your cuddle time with her…I am sure that means the world to her as well!

    Praying daily for you and your family!

    In Him,
    Geri

  2. Hi Tyler,

    Just wanted to let you know I am still praying for Claire and following your blog. The part of your post about the emotion in her eyes really tugged at the heart. I am so happy to know Claire is in a home filled with love and support. You are amazing parents! Continued hope, prayers and support.

    Debbie

  3. Dear Cousins,
    I hope that you know that prayers continue to be made , asking for the Lord’s guidance and restoration for Claire and your family. I am sure that there are times when you might feel that you’re more alone, that now the initial rush of uncertainty and emotion and institutional attention has passed. Not true! Every single week we have a group of people who are specifically lifting you up, and we will continue to do so. God is so much greater than our human mind can comprehend, and He only asks that we come to Him and ask in His name. So we will keep doing so! You are loved and God has entrusted Claire, Autumn and Heidi to you! Thanks for the continued updates. Prayers for a peaceful night for you all! – Ruth Ann

  4. Hi my name is Kelli and I just stumbled upon this site and right now I’m sitting n my kitchen floor w my eyes filled w tears. I have a 4yr old son and couldn’t imagine n a million years what you’re going thru. Your beautiful daughter has touched me soooo deeply. Me and my son Roman will b praying for Claires recovery every night. May God keep u strong and at peace thru this journey.. Love, Kelli and Roman

  5. Tyler and Tiffany –

    I feel compelled to tell you that I have been following Claire’s journey from the beginning. I first heard about Claire through my cousin, Joy, who knows Tiffany through a bible study. She posted the blog on her Facebook page so that others could join in supporting you. When I read that she was at Medical City, I called my good friend Sarah and found out that Sarah admitted Claire into the ICU. In fact, I was with Sarah the day that she got called into work – to assist with Claire. Natalie Grubbs is one of my very best friends from nursing school. Throughout our friendship, she shared about Jacob and I cried with her as she re-lived the journey. I, too, have met the wonderful Jacob. All this goes to say that I am praying for Claire and love that God has made it so obvious that I should do just that. It’s so cliche to say that God works in mysterious ways but he surely did here. Looking forward to continued progress. – Ginny

  6. I am so glad Claire had a better day. I love hearing about all the angels you have in your lives supporting you all! It is awesome! Continued prayers heading your way!

  7. Dear Tyler and Tiffany,

    It was such a delight for us to be with you yesterday. Your family radiates love and unity and hope. You are living pictures of God’s grace.

    I’m so glad meeting Jacob encouraged you. We all desire to be everything we can for you. Sharing your journey is a privilege and honor.

    Hope to see you again soon.
    Much love,
    Jeanne

  8. I am so happy you met Jeanne, George and Jacob. You need all the encouragement in the world, and although every story and injury is different, The Damoff Family’s story is truly an inspiration. Just like yours. Cuddling with Claire the way you did last night is probably the most therapeutic thing you can do right now. Keep that up! You continue to be in my daily thoughts.

  9. I am so thankful that you know Claire that well. I am so grateful God brings the comfort guidance, love and insight we need when we need it most.we are continuing prayers and expectant of what God is doing. Love to each of you

  10. I ordered Jeanne Danoff’s book, “Parting the Waters” and received it yesterday. This morning I was rear-ended on the way to work (boo). However, being at home resting on my heating pad had given me a wonderful opportunity to read this book that i have heard so much about. Though many times I find I can’t see through the tears. The story is SO similar it is almost as if I am reading words that have come from your blog. The words, thoughts, and emotions that Jeanne expresses are so point on it is surreal. I have had many of those thoughts myself and wrestled with the same issues. I marvel that God has brought both families together. It has to be healing for both sides. I am in awe of the LORD. Also, when I was there I also had this picture of the “beauty” that was happening in the midst of tragedy. She mentions this many times and it it touches me deeply in my heart because I witnessed it firsthand when I was there, but not at all to the magnitude that you have been a witness. The outpouring of love and support is…well, it is beautiful. It is remarkable. It is amazing to see God work in ways we never would have imagined. He IS THERE, no doubt in my mind.
    I love you all. You are so very close to my heart.
    Michelle

  11. So sorry I missed your updates the past couple of days. I’m sending positive thoughts and prayers your way for guidance and sleep and calm and good feedings and some peace for all of you.

  12. Dear Tyler and Tiffany:

    We do pray that you will soon have a successful schedule set up for Claire,
    one that will allow her feeds to be avery positive experience for you and for her.

    We’re so happy for you that you have met somebody who has been on the same”road” that you are traveling now. It’s such a comfort when you know that somebody fully understands your situation. I think that is the meaning of the scripture in 2nd Corinthians that tells us in part to: “Comfort ye one another with the comfort whereby ye have been comforted.” Because your friends have experienced what you’re currently experiencing, they have great understanding for your situation and can offer you advice and comfort through this difficult situation.

    May you and Claire have a good weekend.

    Praying for You,

    Ken & Jana Kirkpatrick
    Jesup, GA 31545

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