Friday, February 10, 2017


Hello to all!

We are keepin' on keepin' on around here.

Elle's last couple of infusions have been a little difficult.  Last week, she had a fever virus earlier in the week that rolled into her infusion day.  Then her infusion had her feeling pretty crummy and that crumminess continued into this week as she was still getting over her virus.  We had to take her in to get a chest X-ray yesterday just to make sure nothing was going on in her lungs.  The doctor ended up checking everything...lungs, blood, urine, etc. but thankfully everything checked out okay.  So we are praying that she gets healthy and strong by the time we go back up to Columbus next week.  This morning she really seems to have turned a corner.  She's super tired (having a fever for so many days in a row will do that to ya) but her cough and congestion has cleared up a lot.

We aren't sure if the virus combined with her last infusion was the culprit but her speech and muscle coordination/strength have dipped back down and her seizures have been worse.  Cognitively, though, she seems stronger.  Which is amazing.

So basically more ups and downs.  More hospital stays and doctors offices.  And as a fellow Batten mom told me the other day, when she's up, I'm up but when she's down, I'm down.  It's hard not to let my emotions ride along with Elle's ups and's hard not to let those emotions lead my days.

And the lack of sleep isn't helping matters.  I don't really get much sleep at all while I'm in Ohio with Elle and then one of our night nurses was sick this week so I'm recovering from a severely sleep-deficient week.

Please continue to pray for our travel and that the weather cooperates (which it has so far!).

Pray for our hearts as we try to find our way through each day without our Milla being here with us. 

Pray that Elle gets lots of sleep and rest the next few days and that she feels better and stronger.

Pray that the rest of us stay healthy (which we all have - miracle upon miracle!) and that this city gets healthy.  These viruses are running rampant around here!  It seems like everyone I know has at least one sick family member.

Happy weekend and much love to you and yours,

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