Wednesday, June 16: Update

This morning I got to go on a shopping spree that Tiffany has long wanted to direct. Claire is wearing clothes again and we found that the buttons and zippers on regular clothes were too cumbersome. This warranted a new wardrobe. Claire has always worn hand-me-downs because of her two older sisters, so Tiffany hasn’t had the opportunity to buy new clothes for Claire as often as she’d like. And now that she needs new clothes, I was the one who got to pick the ensembles. TJMAX and Ross were my first stops today. Tiffany begrudgingly commented that I’d done a good job. But she couldn’t say it to my face. It was an aside to Claire: “I guess Daddy did a good job getting you nice clothes.”

Tiffany did a good job too. Today was my first day heading back to the office for a few hours. So Tiffany was my eyes and ears at OCH. Claire had a number of evaluations scheduled today to determine her baseline capabilities. The OCH team will use these tests to set her development goals. This is what she gathered from the day’s activities.

Claire met with the speech therapist followed by the neuropsychologist. Both were testing to determine the coma level at which  Claire is functioning. From a medical perspective, a coma is not just a deep sleep. There are different levels to indicate response and therapy needs. OCH uses the Rappaport Coma Scale that measures how Claire responds to sound, light, smell, touch and pain. We learned that Claire is right on the cusp between level one (near coma) and level two (moderate coma). She is inconsistent or partially responsive to stimuli and not responsive or inconsistently responsive to simple commands. On the one hand, it’s disconcerting to hear that Claire is still mildly comatose. On the other it bears reminding that the insult to the brain took place just over two weeks ago. The speech therapist mentioned this to us: she said the fact she received the injury just over two weeks ago and is now at OCH shows she is doing well. Doctors will slow play Claire’s speech therapy as the time from injury lengthens, and she becomes more responsive to stimuli.

Claire met with the physical and occupational therapists today as well. Physical therapists tend to focus on the lower body while occupational therapists focus on the upper. Our first few days will be focused on work with these two areas. Because the injury is still so recent, the rehab can’t begin in earnest until Claire is more aware, so these sessions will be limited to 30 minutes. The majority of Claire’s work will take place in her room with Autumn, Heidi, Mom, Dad and both grandmas as coaches. We received a handout of stretches and exercises. We were both eager to get started. Claire? Not so much.

Claire’s upper respiratory congestion continues. It takes time to heal from intubation, so the doctors are evaluating some respiratory therapy. Repositioning Claire seems to help get rid of her squeaks and pops, and we hope they go away soon. It will help her sleep much better. It’s hard to see her exert so much effort between breaths.

As I mentioned earlier, today was my first day back at the office, albeit for an abbreviated visit. I felt odd. Not bad or good. Just odd. But seeing my team and friends was good. They’re good people, and I’m glad I know them. My office neighbor often mentions she is loud. I was glad to hear her laugh through my wall today. Each of them downplays what they have done for us these past two weeks. They’re being modest. They have sought to protect me and my family and give us space to grieve, reorient and fight for our daughter. They’ve been brilliant.

Thank you again for all the prayers and support. We hope to have some good updates in the next few days.

Advertisements

27 thoughts on “Wednesday, June 16: Update”

  1. Yes I am so happy to hear she is doing so well. She is an amazing little girl and has fought this battle so well. Congratulations guys….. keep up the hard work and if u need anything let me know. 🙂

  2. What an awesome team you all make together. You need to remain strong,faithful and committed to each other, to Claire and to the Lord. What a blessing to know that you are not alone. Your immediate family, the grandmas,family out of state and dear friends that continue to lift you up in prayers daily are all there to let you know that you ARE loved. Bless you all.

  3. Give me a G, give me an O, give me a C-L-A-I-R-E,
    GO! CLAIRE! GO!
    Just wanted you all to know the Ralstens are cheering for you here in California.
    God bless and keep up the faith.

    Love,
    Uncle Davey, Aunt Mo, Izzy, Emma, & Elliott

  4. Hi Tyler & Tiffany,
    I’m glad you are getting settled in at the new place. Again, thank you for the detailed updates about Claire’s progress. Continuing to pray for all of you as she begins the different types of therapy ahead and as all of you support her. I pray for strength, patience, and perseverance along with joy as improvements come.

    Love,
    Susan

  5. Tyler, I just became aware of your family’s situation last night when Cindy (from Texas school) posted it on facebook. I spent quite some time reading through Claire’s story, tears streaming. Life changes so quickly. Know that you have one more on your team sending up prayers. My heart goes out to you and your family. I pray God gives you the peace and strength to take each day as it comes, and glimpses of joy along the way. God bless, Mandy Lundy (Texas School classmate)

  6. I am just so glad that Heidi and Autumn can be with her again. You guys need to all heal from this and beng together will help. I miss you guys and I wish I could be there with you. You all are never far from my thoughts. I love you!!!

  7. Hi Tyler and Tiffany,
    Thanks so much for all the updates on Baby Claire. My daughter Melissa McAfee goes to the MOPS group that Tiffany goes to. I would like to bring Baby Claire a quilt from our quilt ministry Stitches of Love, Mansfield Tx. We make quilts for children at Cook Childrens hospital Ft Worth, Catholic Charities and Jo Kelly school and any child that needs special love..
    Just need to know how to proceed to get a beautiful quilt to beautiful Claire.. Love and prayers in each stitch..
    I pray God will bless you all in each step of your journey.. He will be with you each and every step..
    Blessings, Cyndy Allen

  8. Hi Tyler & Tiffany,

    A good friend of Tiffany’s posted a prayer request on Facebook back when you started the blog and several of my co-workers here in Addison watch your updates daily. We have a prayer circle at work and Claire is in that circle now. We are all pulling for her and for your strength as parents. The pictures of your girls looking around the corner waiting for Claire at the “station” has touched so many hearts. We each get choked up talking about it. Most of us are parents of small children and relate to the love they share for each other. It is comforting to know your baby Claire has older sisters to help speed her recovery.

    I’m thinking of each of your girls and praying for them too and each of us appreciate your updates. A co-worker asked me about Claire in the breakroom and we were both talking about how much we feel like we personally know your family. Your baby girl has captured our hearts. We will not give up on Claire, we will not forget about her, we will fight with you and with her until she is home safely with your little family enjoying all the things a little girl should.

    “Again I say to you that if two of you agree on earth concerning anything that they ask, it will be done for them by My Father in heaven. For where two or more are gathered together in My Name, I am there in the midst of them.” — Matthew 18: 19-20

    Much Love & continued prayers,
    Debbie McDaniel

    1. What a sweet post. Thank you for persevering with us. It is so good to know that prayers will continue with us through our journey. I know it takes commitment and time to keep us in your thoughts and prayers… thank you. It means a lot to all of us.

  9. Tyler,

    I just read Cindy’s post from Texas School. I am so sorry to learn of Claire’s accident. I will keep her in my prayers along with you and your family. If I can help you in any way whether it’s processing files or making deliveries, don’t hesitate to contact me.

    Please update all of us as you can.

    Keeping the faith, Brenda Padgett (your Texas School neighbor)

  10. I would like to send Claire something special…I have a five year old niece and I told her about what happend to Claire…she is very excited to draw her a picture! Is it possible for me to send something to Baylor?

    A friend of the King family,

    Kristen Hood

    1. We would love to see your niece’s picture! The address here at Baylor is: 3301 Swiss Avenue Dallas, TX 75204. Please tell her thank you for taking the time to make Claire a picture!
      Tyler and Tiffany

  11. Don’t get stuck on scales. Claire is her own unique brain injured child and there are no 2 alike, I promise. It took me forever to accept that. I would be at rehab and try to compare other children to my daughter and it just wasn’t possible. The fact that she is in rehab 2 weeks post is AMAZING. Trust me. She is going to do well. This I know.

  12. Tyler/Tiffany

    Every day my morning starts with reading the Claire`s blog. I cry with what you write and, sometimes, I smile too. But mostly of all, I start my morning praying for Claire and for you all, dear friends.

    God bless you today!

  13. Hello,

    You don’t know me, but I read about your beautiful little girl on another blog. I live in GA. I have a 4 yr old son who also suffered a brain injury at 9 mths of age. He was violently shaken by his babysitter and almost died.

    Reading your blog takes me right back to that first couple of weeks. We also spent 2 weeks in the PICU and was then tranferred to a rehab facility where we spent another 4 weeks for intense therapy. No one could tell me what my son’s future held. No one could tell me what he would or wouldn’t be able to do. All I could do was “wait and see”.

    Well, it was 3 yrs ago the past March. He can walk, run, jump, ride a bicycle, drive a motorized John Deer Gator, feed himself w/ a fork and all finger foods. His fine and gross motor skills are still very compromised, but he’s still improving all the time. His speech is our worst struggle, but he’s now putting 3 words. He’s improving in that area as well. All of it has been very slow. I’ve learned to be patient. I’ve learned alot of things, actually.

    The road of recovery will be difficult. There will be times when you feel like you’re sitting still, but just remember that time is your best friend. The brain takes a long time to heal. Our neurosurgeon reminds me of that every time we see him.

    I just wanted to say hello, to let you know that our prayers are with your family and try to give you some encouragement. There was a time when I was devastated and didn’t know how I was going to put one foot in front of the other. I remember the feelings of helplessness and anger. I remember looking out the window of our room at rehab one day and noticing that the trees had bloomed w/out me even knowing it. I remember feeling angry. How could the world just keep turning like nothing had happened?

    There are times when I still get angry about what happened, but they’re fewer and farther between. I rejoice in every single milestone that my son reaches, regardless of how big or small. This journey has been one that I never envisioned being on, but we’re blessed. My son is alive. He’s getter better every single day and he’s such a joy. We have our trials, but we make it together.

    Your family will find happiness again. I know it doesn’t seem possible right now, but I promise that you will. Never give up hope. Keep your eyes upon Jesus and know that he has a plan for your family. Claire will feed off of your positive thoughts and love. Just love her, love her, love her.

    God Bless,

    Vickie Smith
    Atlanta, GA

    1. Thank you for writing to us Vickie. I appreciate your encouragement and your willingness to share your story. I’m so glad to hear about your son and how well he is doing. Thank you for following our story and coming alongside us.

  14. Still following you guys and praying everyday for strength for Claire and you’re whole family. It blesses my hear to hear that you guys are able to spend time as a family help her with rehab. I’m sure that having access to you all with help her even more! 🙂
    If you need more easy on and off clothes for Claire I would be so happy to send some things. Just tell me what you need and where to send them.

    Keeley

  15. Hello,

    You don’t know me, but I work with a friend of yours, Cheryl Price. I just wanted you to know that I’m keeping sweet Claire and your entire family close to my heart and sending up many, many prayers for you guys each and every day.

    God Bless,
    Wendy Bell

  16. Regardless of what the dr’s dx keep your faith. I have a cousin that was shot in the head on thanksgiving night our junior year in high school. He not only fully recovered but continued to play football went to college on a scholarship and coached college football today he is a well balanced and achieved 32 year old. Put your faith in GOD!
    PS. He had to relearn everything how to walk, talk, write, and eat. The everyday simple task we take for granted he had to relearn it all. It can be done.

  17. We are thinking of Claire and your family throughout the day, everyday, holding you close in our hearts. Our 3 year old, Isabel, loves looking at the pictures you post while we read your updates. She is always inquiring about what Claire is doing, how she’s doing. We voiced a blessing to Claire last night after reading your post. “Lord, heal Claire! AMEN!” We pray for her everyday. As is the case with so many others who have written, Claire’s updates have become a regular part of our day and we are always anticipating the next. Lord, we believe Your hand is in this, guiding Claire and her family according to Your perfect will. We rejoice and give You the Glory for every step of progress Claire makes! Thank you Lord!
    Our hearts are with you, Claire–keep on with the breakthroughs! You are already a miracle we are all witnessing! Our hearts are with you Tyler and Tiffany–draw on the love and oneness the Lord has given to you in each other. Our hearts are with you Autumn and Heidi –just your constant love, for your sister, your parents, and each other, is a huge part of this healing process.

  18. Tyler and Tiff,
    It’s so good to hear that you are finally settled at OCH, I’ve been doing some research about that place and it seems that you are in GREAT HANDS. It sounds like an amazing place….

    We keep praying and thinking about Claire everyday.
    Con mucho amor,
    Maria

  19. Tyler,

    Seeing you in the office yesterday was definitely the brightest spot in our week! We are so proud of your courage and just appreciate your insights into Claire’s progress. I have faith that she will astound us!

    Jill

  20. THinking about you! She looks like she is doing amazingly well! way to go Claire! You have lots of people hoping you make a full and speedy recovery!!! Keep up the good work!!

  21. It must take a lot of energy for you all to stay up on everything but we really appreciate the updates on Claire. Our prayers are with her for a great start off at OCH. We are amazed at all the posts your updates are getting – it’s great to see so many people praying for Claire and having you all in their hearts. If strength comes in numbers then Claire has a mega force behind her. God Bless!!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s