Six months ago Autumn and Heidi were wrapping up school and Claire had just presented a new wrinkle for her ongoing care. Since then a new school year has started and we’ve made headway on improving Claire’s clinical therapy.
A summary of the events I began to report is in order. I wrote last during the anniversary week of Claire’s accident, from the same room we had spent two years prior. Claire has been admitted back to the hospital twice since then, both times due to low blood counts requiring transfusions.
It took us about four months to get Claire to the point where she was no longer losing blood through her colon. We had initially hoped that the bleeding was due to diet; however, that was ruled out after switching to a more elemental formula without any improvements. Steroids were able to bring the bleeding under control, yet they only masked the problem. Two lab tests and a second opinion later, Claire was diagnosed with ulcerative colitis, a genetic disease that is chronic.
Like all scientific medicine, the process for treating Claire has been slow: we are beholden to a slow time-table that is restricted by the need to change only one variable at a time and give each change the time to show results positive or negative. After allotting four weeks to the diet change before determining it wasn’t effective, we started Claire on a new medication called Sulfasalazine. Claire’s case is particular because the drug must be administered via her G-tube and in order to get to the lower intestine, the drug needs to be compounded with a vehicle that won’t be digested before it has a chance to reach the colon. This limits the medications she can take.
Two weeks after starting the Sulfasalazine therapy, there was still blood present and we were concerned that it would not be effective. Our concerns were rooted in the clinical treatment progression for Claire: if the Sulfasalazine didn’t work, we’d have to move to a drug that would compromise her immune system further, and if that wasn’t sufficient, we’d face partial or total colon removal.
Keep in mind that our sole focus was to stop the bleeding. While the colon removal seems dramatic, the important thing is to make sure that blood loss does not continue.
We increased the Sulfasalazine dose while also exploring other treatments. With help from some friends, we researched probiotics and determined that one probiotic had enough clinical support to warrant an introduction. VSL #3 is one of two probiotics that have positive outcomes with ulcerative colitis.
After six weeks of probiotics treatments and tapering the steroids, we believe that Claire is finally at a stasis point. We will continue to use a mix of Sulfasalazine and probiotics to manage any flare-ups with her colon. Our hope now is that we have enough of a handle to avoid any more hospital visits requiring transfusions.
The time change last week seems to have coincided with some sense of a return to normalcy after the last six months. We are not built for constant flux. Our family craves some sort of routine and with the extra hour, came a modicum of relief that we can assume some version of routine. We’ve felt that our journey since late May has been stilted and unpredictable. It’s took its toll.
Throughout the volatility, we’ve continued to rally around each other and steal time as a family when we can get it. There are periods when we’re oversubscribed and miss the moments we have to just let down and relax. But we remind ourselves that it’s only for a season and then we will have another “new normal.” We find ourselves reminding ourselves more to enjoy the calm more now because inevitably, there will be some tumult around the corner. I understand that I’m now describing everyone else’s lives as well: we all share schedule insanity.
We’ve found that there is one sure trick to making us slow down and smile. Claire is infectious. No matter how tired or exasperated I may be, if I walk in to a room with Claire, I now how a reflex reaction to say “Hi Claire!” and do something ridiculous to make her smile. Tiffany, Autumn and Heidi are not immune either. Claire has us all trained well, because we know we will be rewarded with a smile, and sometimes with a laugh. Claire’s powers extend across screens as well. Two weeks ago my brother was on Skype and had Claire laughing. And once he got her started, he couldn’t stop. It’s too rewarding to make her laugh.
Despite the busy schedule, we’ve all managed to grow and learn. Autumn and Heidi have been involved in various clubs at school and continue to improve at piano and violin respectively. Tiffany has been making baby blankets for tow important babies expected in January and is looking forward to making a trip home to Colorado to meet both. After a three-year hiatus, my work-related travel has resumed.
In short, we can’t complain. We are looking forward to seeing family and friends over the holidays and wish the best for you and yours. Thank you for continuing to think of and pray for Claire. We will provide another update as developments warrant.
Take care!
Our Claire Journal 
Continuing to pray for Claire, as well as your entire family:). Thank you so much for sharing the pic of Claire smiling:). She is such a blessing, and that smile is definitely contagious!
Suzi Barton
Is she still on formula feeding? Have you tried giving her normal food (grain, vegetables, fruit, ets.)? My daughter had LOTS of problems from formulas her first year after the accident. We tried all kinds of different formulas until we finally switched to regular human food and since then all problems with digestion and vomiting ended.
We haven’t done normal food yet, but it is something that I would be interested in working toward. Fortunately, she is handling the formula fine. Maybe I’ll make it a goal for the new year.
Thanks for the update. 16 yrs into Jacob’s near-drowning and we still find it is a dynamic situation that requires creativity and wisdom beyond ourselves.
Thanks so much for the update, it is always so good to hear. I love how your family has handled the road God has led you down. God bless you all!
Tyler, Bob Salerno/VHA. I follow your journey. My nephew, JD Hartman, had a near drowning accident 4 years ago. They have a non-profit organization now called Hope4JD that offers families guidance and financial assistance. Please check them out http://www.caringbridge.org/visit/jdhartman. Also, they switched to normal food and it made a HUGE difference. Beth and John (brother/sister in law) would be so happy to share with you how they handle the food process. You are in our prayers.
I pray for you every day
Thanks for the update. I think of you guys often and wish you the best.
Happy Thanksgiving! Thanks for sharing the update. Smiles and giggles are some of my favorite things too. God Bless you all.
What a beautiful smile!! Thanks for the pic. We were just wondering this very morning how she is doing!!! Will continue prays for all of you! God is awesome!
Thanks for the update. You have a great and wonderful family! You will always be in my prayers. Have a peaceful Thanksgiving and a beautiful Christmas.
Thank you for the update! I think of you and your family almost daily as I see our blog in my list of feeds – I always hope for a post.
I’m praying for you all with this additional hurdle and wish you all a Happy Thanksgiving.
So good to get an update and hear how your family is doing! I’m always inspired by your faith and strength. Thank God for infectious laughter…it’s so healing:) I’ll remember to keep you all in my prayers. Tyler, as a side note, I thought you might like to know that Tony has made that cinema lighting dvd you gave him a part of his class instruction on lighting…great gift!
Thanks so much for the update. I often wonder how Claire and your family are doing. Thanks for the pic of Claire laughing also. Will continue praying for you all. Bonnie Foster, LaPlace, LA ( Aunt of Regina Rountree, Fox Sports)
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Thank you so much for sharing about sweet little Claire. She is just beautiful! That smile is awesome. We will pray that she continues to heal. It sounds like it has been very stressful and worrisome. You both are such a wonderful example of true love to your daughter. Hope that you have a great Thanksgiving. Hope to see you soon! God bless – Amy Maurer
Thanks Amy! We should find some time to get together again! Thank you for keeping up with Claire. It is a blessing to have people who care about her and us. Hope you guys have a great Thanksgiving too!– Tiffany
Loving Claire from Colorado! We continue to bless you and your family to feel His abounding love through every hurdle and milestone. Thank you for the update and the great pic! -Melissa Liljestrand
I often think of you guys. You’re in my prayers!
Thank you updating us! I taught at Landry for many years and heard about the accident after moving to Louisiana that year. I also have 3 daughters, very close in age to your sweet girls, and your story and powerful words have always resonated within and inspired me…I am in awe of your strength and resilience. I think about you guys often and wish you the best with all my heart!
Thank you A’Lisa.
We just want you to know we still pray for Claire most nights. I was in MOPS and saw you there. I sat at Cheryl Price’s table. In any case, my son Preston has a special heart for children who need prayers and he rarely forgets to pray for her. In his own words he says, ” Please God, help Claire to talk and walk, for her brain to heal. He is six years old. 🙂 Kim Johnson
Dear Tyler and Tiffany,
I was the Physician Assistant that was on staff on the afternoon Claire came in at Las Colinas. I thank God so very often that He allowed me to help save her. While I was directing things in the E.R. (while the doctor was speaking to you), I just prayed that God would guide my work.The moment that I felt her pulse return after ordering the last push of medication, remains to this day the most significant one in my career. I am happy to see that little by little Claire is improving.