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!
Dana
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