Monday, June 7: Update 2

We started today map in hand and only made it half way. We did get the PICC line in here arm without any complications. We did get the surgery scheduled for tomorrow. We did not, however, meet with the neurologist or admissions representative from Baylor Children House. We continue to learn how to live according to hospital time: the schedules are highly fungible.

Had I started writing this 10 minutes ago I would have been happy to report that Claire had calmed down and was resting from the days events. Her calm has dissipated and she’s again starting the build up: blood pressure and heart rate are both rising in tandem, hand in hand, buddies for life. I’d prefer they were a little more laid back. The nurse just informed us that we are going to up her precedex a little so she can make it through the night. Precedex isn’t a primary sedative but does help moderate high heartrate and blood pressure.

We’ve been asked for an update on the grandmothers. Both Gram-gram (Tiffany’s mom) and Nana have been busy displaying that you never stop being a mom, even to your adult children. They make sure we are fed, they sit for hours with Claire and they play with Autumn and Heidi. They’ve been strong for us and they cry with us. We love them.

Today we had he difficult task of saying goodbye to Tiffany’s dad, Ed. We were sad he could not stay longer and hopethe next time we see him Claire will hug him and tell him she loves him. We love you Dad.

We have another family member departure coming up on Wednesday. We don’t want to even think about it. So we won’t. We don’t want him to go.

As always, thank you for your prayers and support. Please pray that Claire has good rest tonight. Also please pray that her posturing is symptomatic of her withdrawals.

32 thoughts on “Monday, June 7: Update 2”

  1. I speak for so many prayer warriors, Thanks for taking the time to post updates on your beautiful Claire..Prayers are being lifted up for her and all the family.
    I can not even begin to imagine what you and your wife are going through.Please cling to each other and know our GREAT PHYSICIAN, GOD can perform miracles..
    Hope Claire has a peaceful night.Try to rest when you can.You have to take care of each other .
    Much love and prayers coming your way.

  2. I’m praying now that God will give you the peace and strength to get through this unimaginable time. I can’t even begin to understand what you are going through. I can only pray!! My babies are also praying….Larson, age 8 and Landon, age 5 are asking God to heal Claire and to comfort her sisters and her parents. I hope you feel the love we are sending. Even though we don’t know you, you are our family in Christ! Sending our prayers from across the miles, The Beck Family, Summit, New Jersey

  3. I don’t know either of you but I was wondering if Claire has a favorite CD of her songs that she can listen to, or of Childrens Bible songs that will soothe her. It worked great for my daughter when she was 18 months old and in the hospital for a month. I’m not sure if it will help but maybe.

    Praying for ALL OF YOU every single day!

    1. Alisha:

      We have a list of concert hall pieces that we frequently listen to as a family. It’s the most soothing music we consume together. We’re going to start playing some of her favorite Jack Johnson Lullaby tunes and other songs as soon as the withdrawals abate. Those are some of her favorite songs.

  4. Aren’t mothers great???? We are so glad that you have both of them there to help at this time. We will be praying for Claire’s peace and rest tonight.

    We are also praying for her posturing. God has performed miracles and there is no reason to believe that he isn’t with Claire.


  5. Sounds like your ups and downs are as erratic as Claire’s heart rate/bp. How difficult that must be. Know that you have the church community here in Auburn CA prayin for ALL of you, and He is walking along side you, crying when you cry and frustrated when you are. I wish you peace~

  6. Read Joshua 1:9.

    Remember that all things are in His hands and it will be ok. Even if the ourcome is not what you were prepared for, Gos is prepared, and he will stand with you. We pray that the Lord would be with little Claire through it all, and heal her in every way.

    Aubrie Thurman

  7. I’m so glad that you guys have wonderful family to help you out! I’m always thinking about you and your family! I was just thinking and wondering…w/o the sedatives would Claire be awake?

    Thinking of you,


  8. Your family is in my prayers.

    I have added Claire to our Church prayer list.
    I attend The Oaks Baptist Church in McKinney.

    Marilynn Tolle is a friend since high school. She asked for prayer for Claire and the rest of the family.

    Please know God is watching over Claire. HE loves her and the rest of your family.

    I am thinking of you and praying for you all every day and night.
    God Bless you and yours.

    Shirley Parker

  9. To all of you,

    What a terrible roller coaster ride this is for you all, but especially Claire. None of you leave my thoughts and prayers for a moment. For this moment, I prayer for a quiter night for you all. You are all held in the palm of God’s hand, now and forever, whatever happens. I keep adding you to prayer chains!

    Having worked as a chaplain, I’ve spent lots of time in hospitals. Not only is time “fungible,” (great word!), the atmosphere is always a bit frantic, however much people try to make it as humane as possibe. I know from having spent time as a patient in rehab that the atmosphere is very different. While they will push Claire to beyond her limits and teach you to do the same, they know when too much is too much, for all of you. And it’s much more laid back. It’s much more patient-centered. It will, trust me, be a little tiny bit easier to do what you have to do there. You will meet others who, while their situations are different because all brain injuries are different, are working as you are to help their children. That too will help you a lot. So look forward to that, whether it happens on the set timetable or takes a bit longer.

    Blessings to the two of you, all those wonderful medical people who’ve been caring for her, your parents and the others who’ve been caring for Autumn and Heidi, and everyone praying for and thinking about you.


  10. I came to your site from someone posting for prayers. I hope that your beautiful daughter can recover more than anyone expects. I hope the posturing is simply her body relearning to move, and nothing more serious. I have bookmarked your site and will continue to check in on your little girl!

  11. Just a quick hello before bed, I agree with everyone who says thank you for writing about the daily progress, it si wonderful to “check in” with your family.

    I am praying in agreement with Regina from her earlier comment – for the day Claire declares the great works of God! May she declare His peace surpasses all understanding! May she declare His unfailing love and His faithfulness! May she declare His constant watch and attention and His goodness! May Claire declare the miracle!!

    Sweet dreams and much love,
    Shelley & The Cramm Family

  12. My familys prayers are with your family during this challenging time. May the lord be with you.

    James Wallace in Las Vegas, Nevada
    (Sarah and Sandy’s cousin)

  13. While my heart aches over and over again when I read your posts, I want to give you some positives to keep you going. My daughter is recovering from encephalitis, and her brain injury is substantial. It was just over a year ago that she had her g-tube “button” placed, could not hold her head up, cry, smile, or swallow – the doctors told us they doubted that she could see or hear. We were inpatient for five long months. During that time, we went through many things that you are going through now with your sweet girl. I know you get sick of hearing it, but the brain in young children is crazily resilient – even with basal ganglia involvement. (our daughter had a movement disorder due to bg involvement, among other things.)
    So to update – our wee girl (Lola) is not only holding her head up, but she’s smiling, laughing, running, and riding an adapted bike. We’re still waiting for her speech to catch up, but it’s going to happen. She had her g-tube removed last October and hasn’t looked back since.
    When she first got sick (at 2 years, 4 months) I combed the internet for a shred of positivity that I rarely found. I would cling to the smallest bit of good news that I could find. I just wanted to give you hope, and to offer my prayers.

  14. We are praying in confidence that God our Heavenly Father hears our prayers. Lord hear our prayers. May the peace of God that passes all understanding fill your hearts soul and minds.

  15. Prayers sent from Arizona to you and your family. Talk to your little girl like she understands everything, hold her as much as you can, and let time be the best healer in her recovery. She will show you what she can do when she is ready, in her own way, in her own time.

  16. Take it day by day…..
    Enter into HIS rest…..
    Our spirit is united with yours daily…
    May you have His peace and mighty Love…..
    The Browns
    Colonial Heights,VA

  17. You have the best mom in the world. She is one of the Godliest women I know. What a huge support she must be. We will continue in prayer for u all, and definitely pray for what u ask each day. I wish God could be physical sometimes so he could wrap his loving arms around you guys. I know he is in your heart, so visualize his embrace. We are all sending hugs. Hug Claire for us too.

    Marty and Cindy Rauer

  18. Thank you so much for letting us know precisely what to pray for – for your and your sweet baby. You are the epitome of Heb 2’s
    “running with endurance” – just be sure to read the next line – “keep your eyes on Jesus”. He will sustain you… have our hearts and prayers, Blessings, Kym

  19. I pray for all of you throughout the day every day. I had a really good talk with God last night and he is listening. We’ll see his miracles in Claire!

  20. Praying again this morning for Clair’s surgery and for the two of you. We miss you all. One of my friends who has been following this blog said that she felt like she knew you and thinks that you and Tiff are amazing people. I thought that was nice.
    On a lighter note…I am taking the kids to get their drivers permits today…so, pray for me (and all of the other innocent drivers in the road)!! Lol
    I will be anxious for an update.

  21. I am so sorry about what you all are going through right now, especially Claire. She is in my thoughts and prayers. I do not know you all personally but I was in Mops with Tiffany. I wanted to tell you that while I didn’t attend Baylor Children’s Rehab I was an inpatient in Baylor Dallas Center for Rehabilitation after a car accident almost 5 years ago when I suffered from Mild Traumatic Brain Injury among other injuries. They were really great at helping me get better. At any rate, I just wanted to express my sorrow over sweet Claire’s injuries and tell you that your family is in my prayers. I read that the full extent to the damage is not clear but I share all this in hope of giving you hope…I was able to go through speech and physical therapy to bring my brain and body function back to normal over time. I have been blessed to go on and live a normal life once I healed and I pray the same for Claire.

  22. Reading your blog reminds me of where our family was back in 1998 with our little boy. Circumstances were a bit different, but the care and attention of the staff at Children’s was awesome. Our experience with Baylor’s Our Children’s House was very good. We had visitors from IBC that encouraged us too. Along the way we came to learn the meaning of “the peace that passes all understanding.” Unless you’ve been there, you can’t understand how you’re able to keep putting one foot in front of the other, but you learn that you will do whatever it takes for your child.

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