Not so sunny day....

Here is what I wrote on Sunday, June 13:

Honestly, the only reason I think any of us have been waking up in the morning has been Ben.  When Ellie woke up this morning, she sort of got stuck on the bed.   She wanted to move to the floor, but kept falling over trying to get off of the bed.  I was concerned about putting her on the floor because it felt like falling onto the bed was a better option than falling onto her hardwood floor.  Eventually, she ended up falling asleep sideways on the bed, her feet dangling off the end with her upper body on the bed. 

Since we have been home, Ellie has fallen twice.  Once on her way to the bathroom, her legs just gave out on her, the other time was a good face plant into her mattress.  Mostly she has been sleeping.  A lot for any 10-year-old, but super a lot for our Ellie.  Then when she is awake she is sometimes so exhausted, she just sits and stares.  Right now, she is doing "burk" (book + work) as much as she can.  She has a lot of shaking too.  After Ellie's surgery on May 26, Dr. Iskandar told us he did not know how much damage the last surgery caused.  I keep hoping that Ellie is still in recovery from her surgeries AND from chemo which is causing all of these crazy symptoms.  Because honestly, to me, she seems much worse than she did even when we left the hospital.  More sleeping, more shaky, less stable, more tired.  I mean this time she doesn't even seem like she has the energy to attemptwalking.  Whereas other times we've left the hospital without her being able to walk, she at least had the umpspa to try.  She hasn't even been downstairs since we returned home from the hospital.  While I have definitely had my despairing thoughts today and yesterday, there is a part of me that just keeps reaching for the thought that this has to get better, this cannot be the best we will get.  I mean after 4 surgeries, there has to be a better than this.  I feel that dull ache of dread and despair taking hold.  Wishing so desperately that I could do something, anything for her to feel better now.  Not in 2 weeks, not in a week, but right now.  And feeling helpless at watching her be so helpless.