another update

Wouldn't you know it? I give a nice update on Claire only to have it followed-up by a trip to the hospital. Claire caught the cold that went around and it's landed her back in Doernbecher's for respiratory support. That said, she has not had seizures and is fairly interactive. We got in last night and will stay until she doesn't need high-flow O2 support.

more updates

We have Claire's lab results back. The neutropenia (ability to fight infection) is improving...good news!!! Claire's liver is showing stress but nothing the neurologist is worried about yet. Claire's blood showed elevated AST and stable ALT since her last labs. Claire does have bilirubin in her urine now but it is not yet at the concerning level. We will repeat these labs in 3 months unless we feel she needs them done earlier. So...good news!!!! Now just pray she gets over her cold quickly and without too much trouble. Thank you for your continued prayers & support.

update on Claire

Update on Claire: We had Claire's neurology and dietary appointments at Doernbecher's on Friday. We had yet more confirmation that Claire's condition is not hereditary. My wife shares a DNA substitution with Claire (which means it is not the source, otherwise Rebecca would share some kind of symptom). We have released Claire's medical records for yet another study. This one will sequence Claire's entire genome. Though we know it will not ultimately change Claire's condition or fate, we are hopeful the studies will help give insights to rare diseases such as hers.

Claire remains as stable as she has been in her life. Though this has been very nice for us, Claire is more lethargic and has not shown therapeutic mental or physical improvement. We may reduce her current Depakote drug level to try to improve your responsiveness. We await labs, but we are still concerned Depakote may also shut down Claire's liver. We will update as Claire's labs come back. Thank you for your well-wishes and ongoing prayers.