Tuesday, June 15: Update

We’re at Baylor Our Children’s House which will be referred to as OCH going forward. We’ve been admitted, signed numerous forms and registered for our first meal. After our new family orientation at 1:00 PM CDT, it will all be official.

It is a bittersweet move because we had to leave our Medical City PICU family behind. I will have one more update later today regarding those wonderful people. We made sure to get one last parting shot of Claire in her room.

We had been cautioned that we may be sharing a room at OCH. We’re not! We have a double room right now all to ourselves. I don’t expect it to last for the entire rehab, but it’s nice to start out with some privacy.

Claire has always been strong-willed and never hesitated to share her displeasure. She made sure everyone knew she was uncomfortable during the transport.

The transport took a lot out of Claire and she was eager for a nap when we got settled in the room. We’re glad she is sleeping and sounding so much better as she dozes. Her lungs aren’t as heavy sounding and she’s getting better rest because of it.

Thank you for your prayers during the transport. We have a long road ahead and we hope to have good news to share for most of the steps on the way. We aren’t naive enough to think it will all be rosy, but we take comfort knowing that we have such strong support and hopes behind us.

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17 thoughts on “Tuesday, June 15: Update”

  1. So thankful you’ve all made it past this milestone! We are encouraged by your updates, and they continue to fuel our prayers! Looking forward to continued progress for Claire and abundant grace for you all by faith.

  2. Good luck today with the orientation and getting Claire settled. I hope it all goes well. You are in my prayers.

  3. I’m thankful it was an uneventful trip. I am continuing to pray for sweet Claire and for you two. I can’t imagine having to juggle this HUGE life change with parenting the other precious girls. That has been a prayer of mine as I think of Heidi and Autumn.

    I love seeing pictures! This really makes your world real to me and brings to mind specific things to pray for. Thank you for including them and sharing this journey with us.

    We are always open to hear how we can specifically pray and practically what you need as a family. Don’t hesitate to post needs.

    With you every day,
    Amy Cody

  4. I am glad to hear that Claire is settled in er her new room. I am praying that she continues to reach milestones with each day. Thanks for the updates.

  5. Well, now that you are settled at Baylor, there will surely be some other challenges, that I’m sure Claire will conquer. We are always thinking of you guys. We will be there all the way! Besos 🙂

  6. Ahh, welcome to your new “home away from home” and your new OCH family! Our family has been praying for the people there who will become your family for awhile. I am confident God allows certian people to have the extraordinary talents to be able to have compassion and adminster care to such a fabulous family as yours! Once you are all settled in we would love to come visit. Thank you for continuing to bless our lives and allowing us to share in yours! We truly love you all!

  7. Many of us at your dental office have been checking Claire’s log every day. All of us think of your family so much! We’ll be following your journey and thank you for taking the time to update everyone.

  8. Glad you guys are in your new home.. Even though we never stayed at OCH, several friends did while we were on our journey and it is an amazing place…those have said, they met people there that have become their closest friends. I sure you guys will be the same.

    Thank you for sharing, and know we are all praying…
    Trusting,

  9. That is great news that you guys made trip safely! I know you will miss the folks at Medical City, but I know you will get a great staff at Baylor as well. I can’t wait to see you guys once you get your new home base established. We will keep you in your thoughts and prayers!

  10. My mom used to candy stipe there @ Baylor OCH.
    She said it is amazing place for sure!
    Love to you all!

  11. I read this post and cried….. like i have stated many times before I have not stopped thinking about claire in the past weeks, my family as well have called me on a daily basis to see how she was doing. She has truly touched so many lives at such a young age. People who do not know me have tracked the FB post to contact me to see how she is doing. It truly is amazing at how such a small little girl can make such a big impact. I continue to pray for her and your family, and wait for the days when we can see your family taking pictures outside again, while this road may be long and hard… know that we are here to support you and you will be forever in our minds 🙂 I would also like to thank you again for keeping us updated and sharing the wonderful pictures with us!!!!
    Kristen Dame

  12. Like everyone here, I think of Claire several times per day. I’m happy to read that she’s made the transition and is doing well. Yes, some of what they will tell you will be sobering, difficult news – but as we were often told, it’s really just a “best guess” scenario when it comes to everything they know and have yet to learn about the brain’s functioning. An MRI is just picture – we were told that many times. It will be Claire’s clinical presentation that lets you know just what she’s up to, and how much she’s learning and growing. She’s relearning every second.
    I remember sitting in a “team meeting” before our daughter was released from the hospital, and I kept it together until my husband asked if Lola would ever go to school. The doctors emphatically said, “Of course” – and I burst into tears. (I’m a teacher, and I know that of course….every child can go to “school”.) They did not think that she would walk, or speak, or see, or eat orally – she proves them wrong everyday. We knew that they were giving us their prognosis based on what information they had – but they didn’t factor in Lola….and she’s a tough little gal just like Claire.
    This quote defines our journey…. “Though she be but little, she is fierce” (Shakespeare).
    Hoping and praying from Canada.

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