"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Sunday, August 4, 2019

376

We ended up with a stretch of 376 days seizure free and that ended last night. Luella had a seizure about 30 minutes after falling asleep. 

No fever,
Pretty regular sleep,
No clues,
...just Dravet. 

Yes, we are sad to start over BUT super thankful for those 376 days! It was amazing to celebrate ONE YEAR just 11 days ago and we hope to reach one year again the next time!

It was heart dropping to hear the alarm last night... thinking it was probably a false alarm and then walking into her room seeing this.... 


Oxygen levels down to 11 (this should be 100) and her heart rate at 96 (this should be in the 50s during sleep). Thankfully the seizure did stop on its own so no rescue meds needed but she did bite her tongue pretty hard and is dealing with that pain today. Other than the sore tongue and seeing her medication bag in her room this morning, she had no other indication that she had a seizure. I'm glad that she doesn't remember them. 

So... on to other things today and praying for another year of seizure freedom!

1 comment:

  1. So sorry you had to end the long seizure free stretch. But, so thankful that they have been few and far between. Blessings!

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