Monday, June 21: Update

Tiffany called me five hours ago. She wanted to tell me the results of Claire’s eye evaluation. Claire is medically blind right now. She has good corneal strength and her pupils react to light; however, the doctor believes her brain isn’t processing the data input right now.  We were aware that this was a possibility. The Medical City neurologist had mentioned that he saw some mild trauma to the occipital lobe in her brain. The damage is manifesting itself as blindness right now, but we don’t know to what degree. Today’s doctor said she sees this outcome frequently with hypoxic brain injuries and the ultimate outcome is difficult to predict. She has seen recovery and she has seen permanence. Those were the facts.

It was a shot across the bow for us. It pains us to think that Claire may be unable to look at picture books again. Claire would spend hours between book stacks. The week before the accident she completed her first reading lesson with Tiffany. She proudly placed a sticker on her chart denoting she had completed the lesson. She’d only started seeing the world as a place to explore and we’re scared she may not see it again.

The doctor cautioned us that the injury is still young and the chance to regain sight is possible. So we’ll continue to hold on to that hope. And we are thankful for the support of our friends and family who inspire that hope. The eye specialist told us we should get something that caught light and was multicolored because she seems to respond to light and color changes. When Tiffany called to tell me this, I told her that I already have something that works. I received it this morning. One of the police respondents to Claire’s emergency services call has continued to follow-up and pray for Claire. He came to check on Claire on Memorial Day. He and his wife sent her balloons. This weekend he went out-of-town and brought a gift back for Claire because we’d told him Claire likes balloons: his gift is hanging in her room now.

The colors are brilliant and when the light hits the balloon it showers beautiful color casts against the wall. It was exactly what the doctor recommended. When Tiffany heard about the gift she cried. It’s precious to us and we are eager to tell Claire about the man and his family who gave it to her.

While today was difficult, Claire was again not as agitated as days previous. She started the medicine that will introduce more dopamine to her brain and make her more alert. It takes a few days of continuous administration before we see the effects. Tomorrow is our Care Conference. We are eager to hear the plan for the next five weeks and also anxious about the evaluation results from the professionals. We remind ourselves daily that we are hoping for Claire to astound. Today we were told that our daughter may be blind. I think and hope otherwise. Whatever other low expectations may be set for her, I know that Claire has always exceeded them. I expect she won’t be getting out of that habit anytime soon.

Thank you for your prayers and support. We ask that you continue to keep us in mind tomorrow and as Claire works to arrange the communication between her eyes and her brain. Your support gives us strength.

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43 thoughts on “Monday, June 21: Update”

  1. I just want to encourage you to remain hopeful, the doctors told us our daughter would see, but never understand what she sees because her brain was so damaged. She sees beautifully. We continue to pray for your little Claire, that God would restore her more and more each day.

  2. What a wonderful gift the police officer gave for little Claire. It is beautiful and I hope Claire sees the lights reflecting from it. I’m continuing to pray for Claire and your entire family. I’m glad to know (from your blog) what Claire’s specific needs are so I can pray for them. I’ll be praying that God restores her eyesight so she can see those colors, picture books, and more!

  3. I will be praying that Claire’s eyesight is restored fully, that she will have perfect eyesight and that all all other damage to her brain is healed as well. I know God’s timing is perfect and I also know from experience that doctors are often wrong because they don’t take God into account…. God can do anything He wants, and if He wants Claire to have perfect eyesight, she will! If He wants her to have less than perfect eyesight, there is a reason and He will make it clear very quickly what that is. BUT… I am praying for the former… complete healing. One day, I hope to meet you all and see a wonderful perfectly healed Claire. I know it will take time, but I know God is listening to all the prayers being said for her!

  4. Wow.
    OK, Claire – we are praying for healing of eyes/brain pathways so you can see the beautiful world God has given us agian [ and all your lovely family ].
    lOVE THE BALLOON – JUST PERFECT.
    Love and prayers to all,
    Susan D.

  5. Hi Tyler and Tiffany,

    You don’t know me, but several of my friends have put out requests to pray for your Claire. My son, Samuel, had a near-drowning accident in March, 2007 when he was 2 1/2. He was in the PICU for 8 weeks and inpatient rehab for 7 weeks. One of our biggest concerns was about his sight. We had a wonderful neuro-opthamologist at Children’s Hospital in New Orleans and she told us a lot of the same things you heard today. We were told to “exercise” his eyes with lights and colors and this was very effective for Sam. I am happy to report that Sam now has better vision than me and his very favorite thing to do is to look at books. I pray that God heals Claire’s vision just as He did Sam’s – God hears and He is able to do all things! If you ever have any questions from someone who has traveled a similar path, I would be happy to answer anything that I can. Blessings to you and your beautiful girl!

    Kahne Seidel

    1. Kahne
      What an amazing post! Thank you for sharing this miracles that God performed in your Sam’s life. This gives me great hope for Claire today!

  6. I know it’s hard to hear your child might not see. However, from what I’ve learned about cortical vision impairment (CVI – this is what people with hypoxia most often have) is directly related to the brain. So as the brain heals, so does vision. And it doesn’t necessarily mean she doesn’t see. It just means her brain has a hard time processing what it does see. The way a friend explained it to me was like seeing through swiss cheese.

    My son, Christian, has CVI from his near drowning. Back in September, 2 months after his accident, he had an eye exam. He recently had a follow up and the eye doctor noticed marked improvement. Just as I was told – as the brain heals, so will vision.

    Some things Christian loves are toys with black, white, and red (solids and striped, high contrast), mylar balloons, and silver cheerleading pom pom. It is high sensory because it makes sounds when touched, it shimmers, and it’s good for taxtile stimulation. He loves it.

    Good luck with your care conference tomorrow! God bless you guys!

  7. With all of ther expectations that Claire has already exceeded, we feel certain that it is just a matter of time before she is reading her picture books again. With the love and support provided by both you and Tiffany, I have faith that Claire will continue to amaze us all. We will continue to pray for Claire and the rest of your family!

  8. Tyler and Tiffany,
    I am Brian’s mom Glenda. I have been in a similar situation yet not nearly the same. My oldest son, Jason, was born 8wks early and was not breathing and in NICU for weeks. He was on 100% oxygen for more than 24 hrs. I was so thrilled at the day he was able to come home to us nothing else mattered. Around 3 months almost 4, the dr said that we needed to take him to an eye specialist to see if his vision was “intact”, that the 100% oxygen may have blinded him. The moment you felt today, I have felt, it is a huge void and unknown space…
    My result is that Jason is 27 and an aeronautical engineer with Boeing…. We will all wait and see what God has planned for our little Claire. The purpose for our children are not our choice but in God’s Plan. Our family, friends, church family and everyone who knows us are praying for Claire and for you and your family

  9. So many prayers and strength heading your way. I love the beautiful balloon, and the story behind the person who sent it. I’m praying that Claire’s vision improves as her brain heals – she will look at picture books again – believe it with your heart as I know you’re doing. It’s so so very difficult to hear the negative prognoses, bare facts, etc. We had one neurologist tell us that our daughter “obviously has a poor prognosis” and we were devastated and cried for hours. Hearing things in such blunt terms is hard for a heart to bear. I wish that you could turn the clock ahead six months…maybe even a year – to see how far Claire’s come. You would be amazed. It’s the waiting that’s so very difficult (but I don’t need to tell you that). “Like watching a flower bloom one petal at a time.”
    Just thinking of you guys and sending you strength.

  10. Tyler and Tiffany, Your hearts must have stopped to be told Claire is “blind,” but it sounds like it was couched in so many “ifs” and “for nows” and “we don’t know what the future holds” that I hope you continute to believe she’ll continue to astound the doctors. God still holds you all in the palm of God’s loving hand, and you are surrounded by the Spirit. I’ll be praying during the Care Conference tomorrow, as always. I’m so glad for the family and the man who brought you the gorgeous balloon! Take care of yourselves too, both of you.

    Dodie

  11. your post took my breath away….I am so sorry about Claire’s vision. I will continue to pray for her complete healing. Thank you for writing. Blessings to you all.

  12. Lots of prayers for little Claire to have a better day tomorrow and for Mom and Dad to have a succesful Care Conference!

  13. Tiffany and Tyler,
    Tomorrow we will be praying for you in special for your care coference.
    Always thinking about your family.
    Bia and family

  14. It looks like Claire is totally focused on that beautiful balloon!

    What a day for you all!
    I have a picture of you standing in the surf and the waves hit, but, you don’t fall. Your feet become more and more secured in the sand with every wave. That wave leaves and another comes to strenghten you even more!! The waves don’t have the strength to knock you down, they just strengthen your resolve.
    You have had so many waves, often on a minute by minute basis, but, your resolve and Claire’s becomes stronger and stronger everyday.

    So, with that being said, I am asking Jesus to contine pouring His strength into you. I also, pray that when rest is avalaible, you would be able to rest well. I pray you would be able to get nourishment during this time. I pray for your appitite even when bad news trys to steal that from you.
    I pray that everything that would cause strength for your bodies and for this journey, would be yours every minute of every day.
    Love you & am so proud of you!

  15. hey sis i dont know if you remember with i was 4 yrs old and i got glass thrown in my eye. The doctor didn’t think that i would be able to eye out of my eye and the doctors were wrong. Just saying the just because the doctors may think that your little girl is blind doesnt mean that they are right about it. Just words of incouragement from your brother that can see out of my eye . Miracles do happen i should know the doctors said i should have been blind in that eye but i wasnt
    from your loving brother
    mike

  16. I so remember all of those moments when you feel like the sky is falling. The doctors in their matter of fact dictation of what they see going on in your child. Please continue to remember they are doctors… They are well meaning, kind, and would do anything to help Claire get better but they are not God.

    Makenzie did not see anything. Nothing at all. Today however I sat on the floor and watched her follow our kittens all over the room. She sees very well.

    Makenzie was also very agitaited for a very long time. She litterally cried every waking moment for almost 9 months. It took her hours to find sleep and when she found dream land it was normally very short lived. Today Makenzie is the happiest little girl. She throws temper tantrums but other wise is always happy! She smiles and giggles all the time, capturing the hearts of many.

    Hold on tight. It will get better. We are praying for Claire and your family!

    Tons of hugs
    Pam and Makenzie

  17. I am new to your story and have cried with you this morning as I read through your entries over the past few weeks. It was amazing to read about the emergency responder picking up that hot air balloon – as the first commenter said, God provides!

    I will be praying for Claire, you, your family and her doctors and nurses.

    With love and prayers,
    Sarah
    Germany

  18. Love the balloon! My daughter too has CVI – and like Shauna said – it may be like seeing through swiss cheese – some spots are good, some spots not so good, sometimes it depends on how tired they are, because seeing is “work” for them, and if they are tired seeing may not be the priority. I have no doubt that as the brain recovers, so will some of the vision! My daughter also was very agitated, all the time, for several months after the accident. With calming, and a sensory diet (including wilbarger brushing protocol – ask your OT about it) it helped. Now she can handle just about anything. These kids are amazing – they work harder than anyone I know! (oh, and we all know each other – it’s a great community – even if you wish you didn’t have to be here!)

    Hugs!
    Jenny (Cici’s mom)

  19. We don’t lose hope either. We want to think that Claire will surprise everyone and she’ll recover more than expected. We’ll keep on praying and thinking positive.

  20. Dear Martin family,
    I know doctors always like to put the worst case scenario because it maintain our expectations low. Please just take it as a possibility but not as a fact, our mind is powerful enough to concrete dreams, wishes and thoughts. Think in Claire fully recovered and with her precious eyes working 100%. We are praying for Claire full recovery everyday and for you guys to keep you stronger for her. I know God is lisenting.
    Hugs
    Gaby

  21. We lift you up in our hearts and hold you before the the Lord. We stand strong in our faith, believing that the Lord is moving on Claire’s behalf. We pray for your family to find strength, security, and rest in the Lord. We bless the hands of the doctors, nurses, technicians, caregivers….anyone who participates in Claire’s recovery during this time….May the Lord give them divine wisdom in caring for Claire. Pour out Your Love Lord, on Claire and her family!

  22. Counselors always say never tell a suffering person “I know how you feel” but in this case, I do know how you feel. Sometimes when I’m reading your updates, I think, “I could have written this exact post fourteen years ago.” My heart aches for you, and you’re never far from my prayers. It’s hard living in a place of extreme emotions. The ups soar you into the clouds, and the downs plunge you into darkness. And there’s no getting off the roller coaster, because, for now, this is life. For now.

    Doctors told us Jacob’s injury could cause blindness and deafness. As it turned out, both his vision and hearing are acute. He can see tiny specks of dust on the rug, and he can hear a whispered conversation from the next room. For a while he had trouble regulating the over-stimulation, but now he handles it all in stride. We just have to be careful what we whisper when he’s anywhere near!

    I’m sure you will continue to receive disheartening news from time to time, and you may suffer real medical setbacks. We did. No matter what, hang on to hope. God has a plan, and nothing is too difficult for Him. Whatever He chooses to give Claire and your family will ultimately be good. It would be so nice if we could pick and choose what we get, like food at a buffet, but God gives what He deems best, even though He knows it can be hard to swallow for a while.

    It’s hard to be patient, but I believe with all my heart that God’s timing is perfect. Every person who becomes a part of your journey is being touched by it and carrying those effects back into their own world. I pray God grants you many glimpses of the ways your Claire is beautifying the world, not to mention your own lives. Redemption is such a mystery. And of course I continue to pray healing for her and grace for you. Day by day. Hour by hour. Minute by minute.

    With tender affection,
    Jeanne

  23. Hi guys,

    Thanks so much for all of the updates. We continue to pray for Clare’s recovery and we have lots of hope. We can’t wait to see you all. We miss you.
    Marnie

  24. I pray your meeting goes well today.please remember these meetings are extremely hard. Also remember that CVI gets better as the brain gets better. Elizabeth was diagnosed as blind and could only tract light but s she got older her sight has cntinued to improve.
    I pray for both of you and your parents as well.I know and understand their love and concern for you all.

  25. Still praying for Claire and your family. Thank you for the updates. It helps to know what to pray for.

    Tyler & Tiffany…the strength you guys are showing these past weeks are such an amazing testimony of your faith and how God is working here.

  26. I continue to check your blog daily and continue to pray. Claire’s vision will go to the top of the list for her. Encouragement, strength, hope and faith, and ultimately, joy, is at the top of the list for you and Tiffany.

  27. Tiffany and Tyler,

    We continue to pray for you and your family. I am so sorry to hear the news about her eyes exam…That must be very hard to hear. We know from first hand experience that children have an amazing capacity to heal…keep hope that God is greater than we can ever imagine and miracles CAN and DO happen. A miracle is happening right now in fact, as Claire story is inspiring thousands of people worldwide =)

    Hopefully someday we can get our kids together to meet since they were PICU neighbors!

    Love you guys and please let us know if there is anything you need or that we can do for you.

    Tara, Dustin and Liam Johnson

    1. Hey Tara–
      I hope Liam is home and thriving today! Thanks for reading the blog and posting. It was nice to meet you guys in the PICU. It was good to have people you recognize and know some of your pain. I hope your pain will end with great joy and no more complications.
      Tiffany

  28. Tyler and Tiffany,
    Keeping you and your family in my prayers. God does miracles and I’m expecting one for sweet Claire. Keep looking to God, He will never leave you.
    Donna

  29. Our God is a great and wonderful God, trustworthy in all things. I pray He will open the avenues for total healing for Claire. Blessings and Peace. Freddie Conrad

  30. Tyler & Tiffany,

    When I look at the bright rainbow balloon above Claire’s bed, I’m reminded of the promises of God. I’m also reminded of how very powerful a parents “hope and future” is for their loved ones–praying your hope for Claire’s future will continually be renewed, shining ever brighter till the full light of day.

    Proverbs 4:18 (New International Version)

    18 The path of the righteous is like the first gleam of dawn,
    shining ever brighter till the full light of day.

  31. My heart aches for you and your family. I’m sending you images of bright colors and real apples as Claire recovers.

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