Friday, July 16: Update

If the next 10 days proceed as we expect, Claire will be continuing her recovery at Baylor’s Grapevine Our Children’s House outpatient facility. We were excited to learn that the Grapevine facility also has an aquatic center on site: other satellite offices have access to pool therapy but not on site. The aquatic therapy was one of three items on or wish list for Claire’s outpatient rehab center. The other two included a great therapy staff and close proximity to home. We ended up getting all three. The Grapevine OCH staff is well respected and the facility is only eight miles away from home. Now that we’ve nominated the Grapevine location as Claire’s provider, we begin the process of scheduling evaluations so we can make a seamless transition to outpatient without losing any momentum.

We continued that momentum with feeds and meds today. We eliminated another feeding time today and shifted her feeds forward. This puts Claire on a more normal feeding schedule with no feeds occurring a night. This is important because it eliminates two interruptions at night and helps get her ready to transition home. She had a little bit of reflux with this shift today, so we are going to pace the feeds over a longer feeding period tomorrow to see if her stomach will adjust to the increased volume better.

We also worked with today’s doctor to come up with a gameplan that eliminates some of the meds. She is now completely off Ativan and will begin coming off the Seroquel tomorrow. She is making the changes with few – if any – side effects.

Claire had another good night of sleep last night followed by an equally good day. Her ups and downs today were even and she responded well to therapy. While it’s hard to recognize the day to day changes, we marveled at how far she has come since admission at OCH. We are optimistic that the progress she has made so far is just a scout for the recovery to come.

Tomorrow is a big day for us. My mom leaves early tomorrow morning, homeward bound for Colorado. I’ll have much more to say about this tomorrow. Please keep her in mind as she flies home and makes the adjustment back to ‘normal’ life. We will miss her something fierce.

Thank you for your prayers and hopes.

16 thoughts on “Friday, July 16: Update”

  1. I’m one of those who have never met you, but I’ve been following your journey from the beginning. I can’t tell you how eagerly I await each update and pray for continued progress for Claire and peace for your family.
    Has anyone recommended the book What To Do About Your Brain Injured Child by Glenn Doman? I have read it and have even visited the facilities where this organization works and what they are able to help children overcome is truly miraculous. It may offer you even more optimism in Claire’s recovery.
    God bless you and just know that our family in NC is rooting for you all!

  2. I am continuing to pray for Claire. I worked as and OT at OCH Grapevine for 5 years until I had my son last year. Claire will receive wonderful therapy there!

  3. awww…I thought Susie would never come back…I bet that will be hard on everybody. I can’t believe you’ll be home in 10 days. Good!

  4. Tyler and Tiffany,

    Sounds like things are working out well for your homegoing. And blessings for Susie as she goes home to CO for a while. She’s been so much a part of this for all of you. As her mother kept saying of you all when I visited Spearfish–“You’re beautiful inside and out!” I know “missing her something fierce” hardly describes how important she’s been to you through this. Prayers keep flying your way from so many–including your Seattle family as we celebrate the McGrew family reunion Sat. That’s Granddaddy’s mother’s family.

    Love and prayers as you move forward, Dodie

  5. We are so pleased to hear of Claire’s continued progress!!! You will be in our neck of the woods when you come to Grapevine (10 minutes away). If you all ever need anything or need a place for the girls to get away from things during therapy we would love to help out!!! We hope that your mom has safe travels home and thank God for the comfort and strenght she has provided you all.

  6. Well, so thankful that all is falling into place to get Claire back home. Still out of town, but when I get back I can help with the girls. Give Susie a big hug, she has been such a blessing and I know y’all will miss her so. Praying for all of you as she goes home. Love to the girls!

  7. Fantastic post! Tyler, I hear that when you see how many people have visited your blog, it’s uplifting for both Tiffany and you. I hope you realize that your sharing your story and letting us in to rally around you is equally uplifting for all of us, if not more so.

  8. Thank you again for the updates…sharing daily steps with us all. I look forward to hearing each days step….the Lord is with you through it all. Our prayers continue.

  9. I just wanted to let you all know that I was just sharing your pictures with my 16 yr old daughter. she will be attending Weelock college in Boston and becoming a Child Life Specilist after Graduation. I am sure that by now you have become familiar with what that is. She has always had a special place in her heart for children that are struggling as she has struggled alll her life with diabeties. As I was thumbing thru all of Claires pictures, she said with a huge smile on her face.. I wish i could get to know that little girl.. She is so pretty and I could read to her. It would be an amazing experance. I just thought I would share! I hope that each day you all are feeling more and more blessed and stronger!


  10. Marveling with you at how far Claire’s come and glad to hear you get to use the Grapevine facility. Thinking and praying for your mom and you right now as she’s left and all that means for you all.

  11. Everyday, as we read your postings, we so clearly see Claire’s daily progress, the great faithfulness of the Lord in all your lives, and how well you’re walking through this.
    We feel honored to have heard of you and blessed to be able to join the great number of those who are praying with you.

  12. What beautiful provision! This is such an encouraging update. I’m excited for all of you.

    Your mom is a lovely, faith-filled person. I’m delighted I had the opportunity to meet her. Praying for her safe return home and for all of you to have peace in her absence. I’m sure she will miss you as at least as fiercely as you do her.

    Much love,

  13. Small, positive steps are huge steps along the road to recovery. I’m praying for all of you and safe travels for your mother.

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