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mitochondrial disease

Back in the Tower.

2tower that is. the peds floor at lutheran general. I am not even sure where to begin telling what happened or what could be causing this fun stay in Hotel LG, so i’ll just give important highlights via bullet point: After a tough week of just “going downhill” in those million little ways she has, …

Back in the Tower. Read More »

Medicalities.

This is the medical update. For those who are here only for my fantastically witty posts about fluffy stuff…. ummm. there’s some laundry over in the corner you can help fold instead of reading this post! I was going to do two separate posts about yesterdays’ immunology appointment, and tonite’s UMDF family meeting with Dr. …

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She’s got a big head.

Why, yes, yes she does. The “she” here being referred to being, of course, Kendall. I am thinking something like “tact 101” wasn’t part of Dr. B’s ESL/med school training based on this blurted out assessment at our neurology appointment yesterday. Luckily, I have grown thick enough skin to not be bothered by comments like …

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{Breathing Easy}.

Not me, so much. I managed to pick up my own version of ebola virus and can hardly hear, talk or breathe through all the mucus. BUT – my baby is doing much much much better. This morning was still a struggle. I could not update this morning because she was still so miserable, and …

{Breathing Easy}. Read More »