Wednesday, June 23: Update

Tiffany got to have a girl’s night out last night. Autumn, Heidi, my sister-in-law, my mom and Tiffany went to see the new Karate Kid. The girls have been wanting to see it and Mommy was glad for the distraction.

My distraction tastes have always been for higher brow fare that makes me nostalgic for Colorado: I’ll be spending my evening with my friends Harry and Lloyd of Dumb & Dumber. The movie isn’t for everyone but it has my number and still makes me laugh. I need to laugh.

Claire is settling into a sleeping routine at OCH. She falls asleep without pharmacological assistance around 8:00 PM until around 4:30 AM. The doctors were stacking her meds around 9:00 PM, so when 4:30 rolled around we couldn’t give her anything to calm her down. We will be trying a new schedule tonight that reserves one of the anxiety meds for midnight hoping it carries her through to a more reasonable morning hour. We hope it works so both she and the respective overnight caregiver can get the rest they need.

Claire did well today and wasn’t as agitated as yesterday. We continue to hope the agitation will moderate soon. It feels similar to he time we waited to extubate Claire: we can’t move forward until she clears this hurdle and it drives some high anxiety. I anticipate we will experience a couple days of relief when she is more calm and less sensitive. We need those days.

There’s not much more to report. We thank everyone for the offers to help. We hope to have a better idea of our needs in the next few weeks. For now we are thankful for your offers, prayers and support.

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20 thoughts on “Wednesday, June 23: Update”

  1. Seeing you say the phrase, “he time we waited to extubate Claire” breaks my heart even more for you. While those of us onlookers see that as just a few days ago, I”m sure it feels even longer to you. My husband and I think of you constantly, anytime we pass a computer we look for a Claire update. We are praying for you all. Claire is blessed with outstanding parents who are strong and patient. Know that we are here if you need anything, whether it be a milk shake at midnight, or a copy of a Jim Carrey movie. Please don’t hesitate. As a matter of fact we will be in Dallas Saturday, if you can think of anything.

  2. You are an incredible voice Tyler, there are many who relate to you.
    Tyler, I pray for your family everyday. You bring me words I can not find and i bring you my prayers. I am 60 yrs old and the mother of a precious son age 32. He has a terminal illness and I love him with all of my heart. So many times I find my strength thru you. and those that reply to you. God is using you.
    God loves our precious children even more than we do. Seems impossible, but believe me, it is true.
    In fact, God is using you to be my voice when I am too tired to sort it all out. Life is not fair,nor is it easy, but God is our ROCK!
    I pray earnestly, that God
    will give you courage and strength as you guide your family and sweet precious, beautiful Claire thru this hard time.
    I believe with all my heart that we will see an incredible miracle for Claire.

  3. @JeaneDamoff tweeted about Claire so I read the archives n cried & smiled on & off. Prayers went up for all of u.

  4. ALWAYS thinking about you guys! we love you….
    Maria

    I am glad to see that you guys have support from family with visits from grandmas, sisters, etc. I am also glad to hear that you guys are catching a few World Cup games, makes for some good distraction.
    While we all pray for Claire to continue progressing, I think its important for both of you to be able to ‘recharge batteries’ as much as possible – Considering what you guys have been through and the degree of energy you guys continue to expend everyday. May be for Tyler that means playing soccer or trying a glass of new wine or having a burger at Red Robbin. May be for Tiff this means making sketches, making cookies or muffins with Heidi and Autumn, or going window shopping, or heck, real shopping! You get the point – take 5 to reconnect with yourself. This way you’ll still be able to dedicate the rest of the day to climbing up this mountain for Claire, Heidi, and Autumn….

    Rodrigo

    1. Thank you for the post Maria and Rodrigo. You know us well. It’s too bad the World Cup is finishing up! Thank you for keeping up with us as we go through this difficult time.

  5. You don’t know me, but I heard about this through a friend on Facebook. I have been following this blog from day one…All I can say is my prayers are with you and your family everyday…I pray that your beautiful little girl has a speedy recovery…

    ps. I love the movie Dumb and Dumber…I can watch it over and over!

  6. Praying for you all!
    Love that movie, too! If you ant to laugh more try, Old Dogs! that should bring a chuckle or two!
    Love you all!!

  7. Hi Tyler & Tiffany,
    Dumb and Dumber and Tommy Boy are always fun! There was a time years ago when Jeff (younger son) was 5 and was in the hospital for a few weeks with a pin in his arm. At that time the ONLY movie available was The Wizard of Oz, which we watched every day for three weeks. I don’t think I’ve watched it since, but it always reminds me of that time whenever I see it advertised.
    Continuing to pray for all of you, especially that Claire’s agitation will lessen so that her therapy can proceed. I also pray for strength for all of you. I hope the meds help her sleep all night long.

    In Christ,
    Susan

  8. Tyler and Tiffany,
    A night out with the girls (or the guys) sounds just like the ticket sometimes. I do pray the new meds help her (and her nightime companion) get a full night’s sleep. You all need it. You’re all in for the long haul (you know that without my telling you). You’re so wise–once past the agitation, I think you WILL look feel such relief, and can get on with the business of rehab. But you’re actually doing rehab already, just in steps that are frustratingly small. Just remember they ARE steps. And that hundreds of people pray for you constantly. I’m so gratefull for the people around you who can help in concrete ways, as well as offer prayers and encouragement. God is with you, now and in all the stages of this journey that is hard to see the end of. Blessings to you, and to the staff you’re working with. God bless that spunky Claire especially! Dodie

  9. You don’t know me but I heard about your story from my Mom – her church has added your family to the prayer chain and she forwarded your story to me. I just wanted to let you know that I’m thinking of you all and praying for you. I have two daughters who got e-coli several years back – I can remember that awful, helpless feeling. I can remember standing in the ICU and telling God that I gave my girls over to Him and that I had faith that whatever happened, He was in charge and was working all for our good. Fortunately, He healed them and I was able to bring them home. I know that God has his hand on all of you that He hears all of our prayers, and that He is working all for your good. I hope you will be able to bring Claire home soon and that she will heal and grow into all that God wants her to be!

    Much love from Florida!

    Amy

    p.s. Dumb and Dumber – classic!

  10. Dumb and Dumber is one of my all-time favorites–definitely what I would watch if I needed to laugh. Enjoy it! You relax, we’ll keep on praying!

  11. Dumb and Dumber is definitely funny!!! I’m so glad the girls got to have a nice time! Thinking about you always!!!

  12. I just wanted to extend my heart felt prayers and concern for Clarie and the family. I work with Michelle at the University of Phoenix and she has been so kind as to share Claire’s story. It is truly inspirational to me to read about your family and the true emotions and frustrations you are facing during Claire’s recovery. I had a little one lay in critical condition for 4 days once not know if we were going to lose her and not knowing the long term damage. She pulled through and no long term damage so I am praying that Claire can fight and get back to herself in the time it takes. Our families love and prayers are with you from Colorado Springs. Take care

    Jay Thompson

  13. Dear Tiffany and Tyler,
    I know this is a long haul! I know your focuse is on Claire, and it should be…but remember, you have to take care of yourselves and the other girls as well. You need sleep, breaks, and time with the Lord.
    I have a cousin who had a car accident and bad brain injuries. He took about a year in coming back but he is adult and owns a business now. Another friend was struck by lightening and taken for dead. He again took more then a year to come back and now holds a good job. Time is heard to deal with but it does heal our bodies. We trust little Claire will come back and gain her sight as well as control of her body again. It will take time. And that is hard to deal with!
    We pray for you. Take care of your selves so you can take care of all three girls.
    Love you.

  14. Tyler and Tiffany and Family,
    I have been studying a Beth Moore Bible study and this scripture was given to me. I hope it is a blessing to you. “When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not sent you ablaze. For I am the Lord, your God, the Holy One of Israel, your Savior.” Isaiah 43: 2-3
    Your whole family has been in my prayers daily.
    Pearl

  15. After a move to Pflugerville I am catching back up. I am amazed at yours and Tiffany’s bravery and honesty. I can only trust that though these moments, hours and days seem to stretch out before you, that they will one day read in one brief statement as some of the ones mentioned above.

  16. Hi Martin Family,
    I know that you don’t know me. I am friends with Jeanne and Jacob Damoff. (Jeanne said that if I told you that, that you’d know who she was.) My heart is breaking for ya’ll right now. I prayed for a long time last night for each of you and little Claire. May God be your refuge and strength, an ever present help in this time of trouble. I know upon me waking up this morning that you are waking up to your new reality again. I would love to do anything for you and for now, that will be praying. I’m so glad God is BIGGER than we can imagine and that He is powerful. I will pray for healing.

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