I’m writing this update from a Medical City bed, almost two years to the day from Claire’s accident. I have a number of updates to provide from the last few months; however, I would be remiss if I buried the latest happenings.
Claire is undergoing some tests after some abnormal activity began yesterday. Claire has been having gastrointestinal problems the last week and a new development yesterday prompted a visit to the emergency room: we found significant amounts of blood in her stool. Rather than abate through the night, Claire produced a number of blood-only movements. We’ve slowly started opening Pandora’s Box on medical tests and nothing has come back conclusive yet.
Aside from some general malaise and the aforementioned symptoms, Claire is acting normal. She smiles and is attentive. Her coloring is pink and rosy. And she’s being much more patient than her dad. I’ll post an update when we get a diagnosis.
If there’s any good news, this impromptu trip has given me the time to post an update. While there is not much to report, there are some new items that bear attention.
The largest docket item is the Baclofen pump. If you recall, the pump was something we considered early in the process as a means to combat Claire’s muscle tone and spasticity. Her slight frame made her a poor candidate then.The pump conversation resumed about four months ago as a potential solution for making Claire fully relaxed. The first step was to have a pump trial, a minor outpatient procedure to determine if her body would respond to the pump: there’s no need to take on the risks of the pump install if she isn’t even a candidate.
She was a candidate. Our next step was to meet with the neurosurgeon and get his opinion. She was not a candidate in his mind.
This warrants a refresher on what the pump is and aims to accomplish. The Baclofen pump requires major surgery for install. It involves placing the pump below the skin in the abdominal cavity then snaking a tube to the spine where the medication is delivered directly to the spinal cord. The benefit of piping right into the cord is that the global effects – like a cloudy mind and prescription efficacy – are avoided and the symptoms – muscle tone and spasticity – are treated more directly.
Aside from the standard risks associated with major surgery, there was the looming question of, “Will Claire even benefit from the pump?” Claire isn’t highly spastic. The pump has worked wonders on patients with severe tone and spasticity. Claire doesn’t fit that bill. The neurosurgeon was concerned that the negatives would outweigh the gains. Surgery risks aside, he was worried that the pump may make Claire too relaxed: the extra-strength Baclofen would fight against her abilities to hold her head and participate in therapy sessions. We decided against the Baclofen pump.
The pump was our major consideration in the last six months for Claire’s treatments. Everything else has proceeded as normal. Claire has continued to attend her therapy sessions every week. She is slowly gaining the ability to control some movements. She is able to roll over with coaching and limited assistance. She’s started reaching for and grasping puzzle pieces. She is making more effort to look out the window and take in her surroundings on car rides. Nothing monumental, but progress still.
The rest of the family has been doing well. We entered a new phase mid-January when my career moved to “In transition.” We’ve spent the last few months interviewing and evaluating what direction my career will follow.
Aside from that hiccup, the family has been keeping busy. Autumn and Heidi are ready to wrap up school this week and Tiffany is counting down the days to a milestone birthday. We’re enjoying our time as a family, sometimes wishing it would just slow down a little.
Thank you for your constant support. This week marks two-years since Claire’s accident. Thank you for encouraging and praying for us since then. You humble us with your generosity.
I will let you know what happens in the next few days.
25 thoughts on “Update: May 27, 2012”
I know Claire is in competent hands, but wanted to mention that when I had an internal bleed with the same symptoms it turned out to be a Mallory-Weiss legion/tear. Perhaps its worth throwing that term to the doctors to be sure they’ve considered it.
We are still praying for a miraculous full recovery.
Thanks for the perspective Paul. Without giving away too many gross details, Claire’s problems are originating in the lower GI track. Mallory-Weiss is an upper GI track issue. In the event that we get through the whole battery of tests for the lower and don’t find anything, I’ll mention it to the doctors and have them run a screen. Thanks!
I hope you get answers soon! You all continue to be in my thoughts and prayers!
It was so good to hear from you and to know that despite this immediate setback, Claire is progressing well — more attentive and physically active. Hope and pray that all went well with the tests and that treatment and recovery will be productive. The info on the Baclofen pump was most interesting — sounds as though you and your doctors made the right decision to go forward without it. It was good to hear about the rest of the family as well. And many good wishes on your upcoming interviews! I look forward to the next update.
Thank you for the update. My family is friends with your aunt Regina’s family. We have been praying for Claire for the last 2 years and we will pray fervently today.
I appreciate the update. Thank you. I continue to pray for Claire. I pray for you and your family to experience God’s love, grace, and peace in decisions and the daily journey. “The Lord bless you and keep you. The Lord make his face shine upon you and be gracious to you. The Lord turn his face toward you and give you peace.” Nu 6:24-26
Praying for your baby girl, as well as for your family:) please keep us updated…
Dear Tyler, Tiffany, and family:
Thank you so much for this update. We’d been wondering how Claire is doing. From your entry, it does sound like Claire has made some progress in recovering from her accident. When you have the time to do so, please let us know how Claires’ current intestinal situation is resolved.
We are praying for Claire and for all of you.
Our Love and Prayers,
Ken & Jana Kirkpatrick
Jesup, GA 31545
Thanks so much for the update. I was just thinking of your family last week and hoping all was going well. Will be praying for Claire and her new medical situation.
I’m praying for Claire and thinking of your family.
So many people praying for you…what a wonder is the internet. And even a possible solution to this latest medical mystery by one of the many pray-ers. Lots of us are praying for Claire, your family, the medical professionals charged with treating and caring for Claire. I pray that you will feel yourself surrounded by love and care in the hospital, at home, and from all who are following this journey no one would volunteer for. I don’t know who sent me the news about Claire two years ago, but I have been privileged to laugh and cry and pray over your blogs. Thank you.
I have thought about Claire often. I check frequently to see if there is an update for her. I am so sorry about her current trials. I pray that they find an answer soon. I am however excited about her progress. Any progress is GREAT news! Big or small! Please let us know when they find the source of the bleeding as well as if there is anything we can do for you and your family. I will continue to pray for Claire and your family.
thanks so much for the update – just read about your trip to Northern Cal – your pics are incredible – glad to hear about the progesses and am praying that the coming months only serve to produce many more… praying for you all.
Thanks for the update. Have you tried Botox injections for Claire instead of the pump? Both my boys get them every 4 months. It makes helps them alot they are spastic CP. Contact me if you want more info.
Janet: Claire also gets Botox – and phenol – injections about once every three or four months. She responds well to both.
Very glad to receive this update. Thanks for your openness in all that you are enduring. Praying you will find rest and an abiding joy…
George (with Jeanne and Jacob)
Yay, an update!! I’m sorry that Claire’s having some GI issues – hope that they get this sorted sooner so that you can get her home. Very interesting re: baclofen pump. So much to consider – especially if there’s really no guarantee it’ll work for Claire. We’re at the same point with our discussions re: VNS for seizures. Catch 22 for sure.
I’m so glad to hear how well Claire’s doing with her therapy. We celebrate every inchstone with you – amazing girl!!
I was so happy to read an update, sorry that it was from the hospital though. Claire, and the rest of the family, have never been far from my mind and prayers. I am thrilled that she is improving little by little, and I trust that the bowel issues are a minor setback. ❤
Hey Tyler and Tiffany,
Let me know if there is anything we can do to help. Just give us a call. We are available. Please give that sweet girl a hug and a kiss from us.
Really appreciate the update on Claire. I think about her and pray for all the familyI sincerely hope this new issue will be resolved soon. God bless you all. Bonnie Foster Bonnie Foster, New Orleans, lA (Regina Rountree’s aunt.
Thanks for the update. I was just thinking of you guys the other day and wondering how you all were doing. I’m still lifting little Claire up in prayer and am happy to hear she is making progress! I’ll pray for quick answers and healing on this new issue. Love you guys.
Thanks so much for the update…You guys come to mind, and I wonder how you’re doing!
He does remind me to pray for you…Don’t you appreciate how mindful He is of us?
It is good to hear of Claire’s continued progress!
Any resolution for the new issue?
I think about and pray for Claire and your beautiful family often. I hope her GI issues were resolved and that your work transition was a smooth one resulting in a great job. Continued prayers for you all.
It has been years and I continue to look back at this site for any update. I hope all has and is going well.
I feel very much the same. The “caring connection” remains.
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