Eve's cold is totally gone!  She's been in a lot of pain, but we've increased her morphine and that seems to be helping.  She still has her episodes, but they're spaced out better.  We're trying out a new leg brace to maintain progress made by Botox shots.  So far, it's pretty hard for her to wear it (it hurts), but we'll go slow - a little at a time.  We go back to neurology for a followup in 2 weeks, so I can check in with him and hear what he as to say.

Happy Birthday to me

 While this is a great picture of Eve's smile, it is misleading.  She was right in the middle of a pain episode.  She had been on the couch, but I got her in her chair so she could join in on the birthday celebration.  In moments, she seized up.  I think the smile is genuine, but she tends to laugh when she is in pain.  The tell tale sign is that hand up at her side.  Her arms go stiff or bend when she's in pain.
This was tough for me.  We had to get her back on the couch the second we were done singing.  From now on, we'll have to shift the candle portion of the celebration to the living room.  We already do presents there. 

Eve is hanging in there.  Her cough is gone and she's still a little junky sounding.  She's back to not smiling as much, and she's in a lot of pain.  She's been having nightly pain episodes (and even one this morning at 5am - which NEVER happens) and can't seem to stay in her wheelchair during the day for very long at all. 
Her pediatrician has listened to her lungs and thinks they're not concerning (which is great).  We're going to step up the morphine that she gets to try to get her more comfortable.  Also, she had blood work done today.  The doctor wants to test her thyroid.  I noticed that she has lost small clumps of hair behind her ear.  The skin is smooth and the doctor confirmed it is alopecia.  This can be caused by problems with the thyroid, which her mito doc had said can be related to her mitochondrial disease. 
We continue to keep an eye on her.

Eve is sick

Poor Eve.  She's been sick since April 1st.  She's got a horrible junky sounding cough.  She doesn't have the muscle strength to cough productively, so she just hacks and hacks and doesn't get anything up.  Sometimes, she vomits the mucous up.  This is good for clearing her, but she could aspirate which is scary.

We went to the pediatrician twice, and kept an eye on her.  Monday, she was very uncomfortable and moaning a lot.  She also started sucking in her breath like she had a sharp pain.  This continued on Tuesday and the sharp pains got worse.  She'd start to cough and immediately suck in her breath and cry out.  She did this if startled, too.  We went to the doctor and she had developed a low grade fever.  The Dr. heard the beginnings of crackling in her lungs.  Eve also had smelly urine for a few days.  The Dr prescribed an antibiotic to take care of both a possible chest infection and UTI. She said the pain reaction could be from sore throat or muscles from coughing for 2 weeks.   It's been 3 days since we started the antibiotics.  Eve is in a much better mood - laughing and smiling, which she hasn't done easily for a while.  The smell went away in her urine.  However, she is still coughing horribly and doesn't sound any better.  She's coughing more throughout the night as well.

I'm pretty concerned.  Not in crisis mode, but pretty concerned.