We had visitors over the Labor Day Weekend. Grandma O. and Aunt Kelly came for a visit. They were especially excited to be able to witness Elias continuing to try and walk. He did very well with this over the weekend. At times he could take 10 or so steps before losing balance and falling down. As his speech therapist said this morning, “Elias is in motor mode.” She was commenting on the fact that he was completely ignoring everything we were attempting to work on. This is appropriate behavior though. So there are no worries.
We mentioned in the last update that we were monitoring his feeds more closely after his speech therapist pointed out something we had noticed before, but had never correlated. It is not problem as of yet, but we have been logging his behaviors and patterns. After nearly a week of doing this, we are a little concerned by the consistency of what we are observing. We will continue to track for another week before heading to GI with the results. Then we can determine if there is truly a problem or a coincidence of events that describe other issues.
We also spoke with the FA nurse coordinator this week. She was calling to inform us that the doctors have finally come to an agreement on the MRI issue. Elias’ Bone Marrow doctors were inquiring the clinical value of the suggestion for another MRI by Neurology. Based on a review of the one done last September there was significant reasoning given to warrant the sedation risk, but also the radiological imaging exposure which has to be limited in FA patients. The Neurologist wants a complete seizure protocol done during this MRI to rule that in or out as the reason why Elias stops breathing. Also during that MRI she wants imaging of the cervical spinal area to ensure Elias does not exhibit a Chiari malformation. We have not really been given much of an explanation as to why she thinks this may or may not be an issue other than it is somewhat common in Fanconi Anemia patients. Maybe it is more to rule it out as a concern down the road since we already have him exposed and sedated versus being potentially linked. We hope to have an answer on that soon. This MRI is going to be around mid-October, a few weeks before his next surgery. The final bit of good news we received was that Elias’ IGG levels seem to be doing well on this monthly IVIG infusion schedule. We were having to do this every other week. While this is positive news we have been given notice that once cold, flu and sick season begins it may be necessary to make them more frequent again. We are fine with that. We firmly believe that IVIG was what kept Elias relatively illness free last winter. While very costly it is totally worth it.