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.
Our Claire Journal 