We've been having such a fun time counting Luella's seizure free days... today she made it to 174 days and that's where we stop this time. Shortly after reading "Silverlicious", saying bedtime prayers with Luella asking God once again to take her "seizures away forever", singing bedtime songs and hugs and kisses... she had a seizure.
Luella has had a cold. I thought she was getting a little better but was hit with some chest congestion and now a cough today. She didn't feel hot at bedtime but did have a fever of 101 after her seizure. Thankfully the seizure stopped all on its own tonight without any meds - not common for a bedtime seizure so we are thankful for that. She immediately went into her shivering - which she does after almost every seizure. I asked her if she was cold and she replied "Yeah" - another thing she doesn't often do after a seizure. I gave her some ibuprofen and hopefully she doesn't spike another fever during the night. I snuggled a bit then left her to sleep. Then I shed my tears.... I will have to tell her tomorrow that she had a seizure.
But... we are grateful for 174 days. That was the longest EVER! And we'll look forward to the next big long run and hopefully that starts tomorrow!
oh bless her heart!
ReplyDeleteI was really glad you mentioned her shivering. Ben does the same thing and we've always wondered if he was cold (because he feels plenty warm) or if its just his muscles spasming or something. I've always wished he could tell us how he feels/where he hurts etc. So this was very enlightening :) You're such a good mom Heather. May the Lord continue to bless your sweet family!
I just found your blog from your husband's post on the Facebook support group. My daughter was recently diagnosed with Dravet and reading about all the milestones Luella has hit gives me such hope. Thank you! I'll keep you all in my prayers and I hope this next stretch between seizures is even longer for Luella!
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