Tuesday, June 22: Update

The Care Conference was short and to-the-point. What was the point? Wait and see. We didn’t learn anything new during the meeting. The doctors are pleased that Claire is slowly becoming less agitated. But the overall refrain was the same: Claire is going to have a long recovery and nobody can tell us how fast or how good it will be.

It was nice to see Claire’s team in one room. Everyone was very attentive and answered our questions with care and candor. Tiffany asked about Claire’s cortical vision impairment (CVI) and how the vision challenges are factored in her coma scale score now. Doctors will continue to test her vision, hoping it improves, but will factor it out of the coma scale score.

I asked some clarifying questions regarding treatment and refrained from asking the question to which I really want answers, because there are no answers now. The uncertainty is taking its toll on my psyche. With the lack of sleep, I’m becoming a little surly. I made sure to order dessert tonight hoping it will take the edge off; however, they brought me a dessert with fake apples. I can’t abide fake fruit. So no dessert.Or maybe just a couple bites. Who am I kidding? It’s already gone.

We said goodbye to Tiffany’s mom today. We love her and are so thankful that she was with us to help watch Autumn, Heidi and Claire while Tiffany and I sorted out the early brouhaha. Autumn couldn’t let go of her Gram-Gram. Heidi was glad she got to plant flowers with her. We look forward to seeing her again soon. Please pray for her safe travels.

The waiting continues and we hope that Claire’s agitation will soon move to a level that makes it conducive for more aggressive therapy. Thank you for your support.

23 thoughts on “Tuesday, June 22: Update”

  1. I am Praying for / thinking about you guys. I empathize with your frustrations about the unknown. I hope some clarity comes soon and her agitation subsides.

  2. Just want you to know that after I pray for Claire, I pray for her parents, siblings, and extended family. I can almost sense your level of fatigue through your post. I pray for peace, patience, and sleep. And, of course, that Claire busts through all the predetermined parameters and is once again the girl you remember. Hey, God can do it!

  3. Prayers for Claire, parents, grands, and all the support and staff people.
    Take care of yourselves too guy – need to eat, sleep, exericse a little [ walk, PT with Claire?, etc.
    Love and hugs to all.
    Susan D.

  4. I’m not sure what to say to encourage you guys. All I know is to point you to the Word. The Lord laid this passage on my heart as I thought about you tonight.

    Isaiah 40:28-33 (English Standard Version)

    Have you not known? Have you not heard?The LORD is the everlasting God,
    the Creator of the ends of the earth.
    He does not faint or grow weary;
    his understanding is unsearchable.
    He gives power to the faint,
    and to him who has no might he increases strength.
    Even youths shall faint and be weary,
    and young men shall fall exhausted;
    but they who wait for the LORD shall renew their strength;
    they shall mount up with wings like eagles;
    they shall run and not be weary;
    they shall walk and not faint.

    Still praying,

    1. Amen, this is a favorite verse for me, I think it is so needed for parenthood. I will be praying in accord with you. God bless you, Tiffany and Tyler, with perseverance and strength in weariness.
      Shelley & Family

  5. We continue to pray for you all. In Romans 5, God tells us that sufferings produce hope. “And hope does not disappoint us,
    because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” Praying that this precious hope flourishes and fills your hearts each day. When the fullness of God’s time has come, we will all stand amazed at the wonders that God has worked in Claire’s life. We wait hopefully with you.

  6. Wait and see…. just wait and see the miracles that God is capable of! Trust in him, he will help you all through this…

    My thoughts and prayers continue to be with you all.

  7. Just know, I check your posts daily. I pray for all of your family daily, as do many others. God is with you, I know you know it. He will never leave you nor forsake you!!!

  8. Dear Tyler, Tiffany and Girls:

    We continue to pray for all of you, and especially for Claire, that you might continue to see improvement in her situation.

    We pray for His peace and comfort for all of you throughout Claires’ recovery.

    Know that He is watching over you and your precious Claire; and He will bring her healing to pass in His time.

    Our Love in Him,

    Ken and Jana KIirkpatrick

  9. I just wanted to give my thoughts and prayers for your beautiful little girl. I can tell from the picture that it seems she see’s the balloon. Looks as though she’s looking straight at it. God holds her and I pray that whatever the outcome she will astonish and amaze all. Brighter day’s will come for her and she will do wounders with what God knows she can do. Best wishes to your family! Claire, you are in our prayers!

  10. Tyler and Tiffany~
    I read through the posts that others have left today. Clearly, many are holding your famiy close to their hearts in prayer. There is a selfish part of me that wishes there was no need to hold you all so tightly in love and prayer. My tears rain down for you. Words seem empty to write. I just pray for you to have others holding you in strength at this moment.

  11. You are a strong family and strong faith; that is what will get you through this. We care about you here and miss seeing you around the office.

  12. Hi, you don’t know me, but I learned about your family’s story from Tamara Wilkinson. I am on the 7th Floor of VHA. Tamara knew that I may be a valuable resource to you as I have spent a lot of time in therapies with my disabled child. In fact, we spent many hours in OCH Dallas for their feeding program. As for lifetime therapies for my child (Maddie, 9 years old) since birth, she’s been receiving therapies from OCH Irving, OCH Waxahachie, OCH Dallas, and she’s even been to the OCH Allen clinic for an evaluation for a Communications Device (Dynavox).

    I tell you all of this to say that Claire and your family are in my family’s thoughts and prayers because we understand a little about what you’re going through. However, we would never say we fully understand wha you’re going through. We only have one child (we didn’t have to keep up with the emotions and schedules of other children). One thing my husband always says to the Daddies when we hear of tragedies such as this is, “Always be there for your wife!” My husband, Richard, said when Maddie was born with several anomolies and the news from the doctors was grim, people came to hospital to “be there” for us, but at the end of the day they all went home. While he felt so alone at times (because the hospital kept me doped up due to labor/delivery concerns), he finally realized that life goes on for other people. It’s been 9 years ago, and he still thinks about this…but he said the only thing that got him through it was to be there for me. Sounds sweet, but it all honesty, I thank God everyday that Richard is here for me. Of course, we both play a major role as parents in Maddie’s life, we do depend on her Grandmother (my mom) for a lot of support now as she’s older. She helps us a lot with her. Today, I can only see Maddie’s abilities…I see that if there’s something she wants to do, she’ll find a way.

    Please, please, contact me whenever you need someone to reach out to whether it’s for emotional support or for resources. You may not be ready for all the resources I’ve learned about over the years, but I feel like a social worker sometimes because of all the knowledge I’ve gained over the years. Hopefully, the hospital has a social worker of some sort that can help you with resources, too. But I definitely don’t mind sharing any that I’ve learned about.

    I did read your entire blog, and I agree with what someone said about the fact that Claire is in OCH means the possibilities are there for her. Keep your POSITIVE ATTITUDE!! That’s been the best reinforcer for our family and for Maddie.

    Donna Dixon
    972/830-0356 work
    972/571-6904 cell

  13. Dear Tyler and Tiffany,

    We have been praying for you and your family daily. I want to say keep the faith that Claire will get better. At least they have managed to give her that opportunity. Having had a child on life support about 40 years ago I understand the roller coaster of emotions you are going through. It is hard but you can do it.

    One of the best things you can do is try to keep life as normal as you can for the girls and yourselves otherwise you will drive yourselves crazy with the what if’s etc. The most important thing is to try to get regular rest and meals that are healthy for all. Take the girls out for things that they enjoy and try to spend one on one time with each other.

    Remember that Claire needs you yes but she also needs time with out you to rest and get well God willing. The girls need you more at this time to calm their fears etc as they do not have a caring nursing staff to help them along. It is hard to let go but you have to just a little bit for the well fair of the family as a whole and your own heath.

    God be with you and your family as you travel down this very rocky road.

    Good luck and God bless you all.
    Eddie and Janice

  14. We will continue to pray for all of you. Stay strong and never give up hope. Thank you for keeping us informed. So many people are praying.

  15. Tyler, my daughter, Anne Rener, works with you at VHA and has been sending me your updates. Today, however, I signed up for my own because, like so many people who are traveling with you daily, I feel I’m such a part of your lives. I’m totally immersed in your journey with Claire, Tiffany, Autumn, and Heidi. Along with your extended family of parents, in-laws, siblings, and so forth.

    What a precious and loving family you all are! Your three girls are absolutely beautiful, and I know you’re proud of all of them. I don’t doubt that Claire’s eventual return to normal will be mostly because of your love for her and each other.

    I’m an optimist. My brother has always called me Pollyanna, but I truly prefer to live with good thoughts and face reality with them rather than with cynicism. To me, every single note you make of Claire’s progress and even her setbacks shows that she’s recovering according to her body’s own timetable. The frustrating part is that you and Tiffany are on another internal clock that runs a bit faster and says it’s time for Claire to be up and about.

    We all pray that she will be. Thank you so much for sharing your feelings with us. And thanks for inviting us to ride along with you.

  16. Dear Tiffany and Tyler, Natalie is Autumn’s piano teacher, and I am Natalie’s daughter… Our family has been praying for Claire and you guys, and we follow your blog daily which goes through thorough English-Russian translation… Our heart goes out to you all, and really, and I just want you to know that we all have been praying and thinking about you. We also wondered, if you would be interested to resume Autumn’s piano lessons. Natalie wants to offer them for free to her if she is up to them. If she is not ready, please know that the offer stands whenever she is ready. I know playing piano has always been one of Autumn’s favorite things… If we are able to bring one-millionth of normalcy into one of your girls’ lives, we would feel only privileged to do so… I know she probably hasn’t thought about playing piano for a while now, but when she does bring it up, please know that Natalie also wants to offer to pick her up and drop her off. She is wide open in the mornings, and would love to help out in any way she can…

    1. Olga–
      Your offer is overwhelming. We really appreciate it. We’ll have to get back to you about it. It’s a bit hectic, and this hasn’t been easy on Autumn. I don’t think she’s quite ready to start piano again, but Natalia’s offer is soo generous. Thank her for me. We’ll let you know.

  17. To all of Claire’s family–None of you know who I am, I was told about your situation through a co-worker of yours. Words can’t express how much I feel for all of you. Just know that whatever comes of all of this, is what God intended for. He is by your side. We are ALL ( so many of us) praying for your strength and happiness each passing day. We are praying that Claire will slowly, but surely go back to being the little girl you have always known. Just take one day at a time and keep praying. Remain hopeful and positive. Keep smiling for Claire!

  18. Ty and Tiffany,

    We need an update on how Autumn’s basketball games are going? Haven’t heard anything on how her first game went….

    You are doing great at the challenges on your two distinct “fronts”….caring for Claire and helping to maintain an environment that Heidi and Autumn feel loved and can “thrive”…Kudos oh, wise and faithful parents!

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