Big Girl

Just wanted to post an update.  Tried to on Sunday night but it must have run onto a glitch.

Adela is continuing to do well.  She is allowed off her pole and pumps for two hours (yesterday and today).  Her sed rate is dropping which is a sign of the inflamation decreasing.  Her labs are showing normal levels and her stool quality is improving (and smelling :). They are working on transferring her nutritional needs over to elecare and supplements to reduce the needed TPN.  TPN can stress her liver and was showing some of those signs before they started to slowly reduce it.

Another one of her genetic tests came back.  This one was for congenital disorders of glycosylation (i.e. a family of rare metabolism disorders). Her blood results came back with normal results.  We are still waiting on the blood test for HFI (-hereditary fructose intolerance – done once previously -negative ) and her mitochondrial DNA sequencing.

Tomorrow we are having another care conference to figure out the goals for discharge and continued care and testing.  We are in no rush to go as they still do not have an answer, but we hope to make clear to them we would like to have a very concrete plan and follow-ups already set-up before they even consider discharge.

And for the big news….as of today Adela weighs the most she has ever weighed –  26.7 pounds!