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.