Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
To say we’ve had a few rough patches over the last weeks may be an understatement. In case you missed recent events I posted about on Eloise's facebook group and the stories of Eloise's instagram page, I'll recap it. And then move on to those treasures I mentioned. The very short version On Saturday, November... Continue Reading →
Another seizure. This time longer. 40 minutes. In those moments, especially when Eloise gets a sudden breather for a half second before the seizures return and freeze her little body over and over, it’s heartbreaking. It feels like pain is all there is, and pain is all there will ever be. But I know tomorrow... Continue Reading →
It’s weeks like these that I am so enormously grateful that Brian is staying at home, too. Just last night as I was going to bed I looked over at him. “Brian, you staying at home with us has been a great decision.” “I completely agree. It was the right move.” Brian responded. “Can you imagine what it would be like if you were still working?” “It would be rough.” “I would not be okay mentally. I really wouldn’t. The amazing thing is that right now even in the midst of tough stuff, I actually feel like myself. I’m so grateful.”
I wish I could say I am completely immune to looking for -- and preparing for -- danger in all the wrong places. That I'm somehow more mature and more wise and can magically predict the future. But, regardless how much I've tried to neutralize known threats when it comes to Eloise's health, it seems I have fallen into the same trap as mankind.
March 20, 2021 This was originally published on facebook shortly after we received Eloise's diagnosis in 2021. So much to write. So little time. https://youtu.be/dPsNhKL27r4 This week, according to "wonder weeks" she should have given her first smile and tracked objects for short periods of time with her eyes.Smiles have not arrived yet, but apparently... Continue Reading →
Eloise The Tiny Fighter 