Wednesday, February 22, 2017

Good Things

So I didn't realize until after I sent the last email/post that 'virus' was probably not the best subject line.  Sorry about that!

Thank you so much for your prayers, always - God has kept us healthy and Elle was completely healthy going into last week's infusion.  She had her typical symptoms post-infusion with nausea and fever but the nausea seemed a little less.  Also, her usual super fussy/grumpiness the Sunday/Monday/Tuesday after an infusion has been nonexistent this week!!!  It's so wonderful to have her happy and silly and smiling and giggling so much.  

Also, her seizures have continued to be so much better!  It's amazing and we are so very, very thankful for this bright spot in her life - it gives her such a better quality of life.  I feel that she is still noticeably weaker than she was in January but she is fighting to keep those muscles strong. Her determined and willful spirit is a good thing as she fights this disease. :)

Elle's sleep has been less than stellar but we are getting through. 

A specific prayer, please, for sleep for her as well as appetite.  She lost 2 pounds in between the last 2 infusions (a 2-week time span).  But thankfully, her appetite has seemed to improve the last few days and she has even been eating new foods (which she rarely, rarely, rarely does)!  Please pray that she continues to eat and try new (and healthy) foods!

And please continue to pray for Ann Carlyle.  I think she is having a rougher-than-usual time lately processing Milla's death and trying to deal with Elle and momma traveling so much.  Please pray for her heart.  And pray that she is able to process things in a healthy way.

Frazer was able to get away to snow ski last weekend with some buddies.  We are so thankful that it was a wonderful time for him and thankful for a short reprieve (relatively) of the weight that is constantly on his shoulders as husband and father. (And sooo thankful that he came back in one piece and no injuries!!)

We continue to strive to rely on our God to sustain us - to give us strength - to give us life and joy.  The light is brightest when darkness is present.  He is good.

Much love!

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,