Hope's favorite thing to do is snuggle into the bean bag chair and fall asleep sucking on her soother. She looked so cute in their, I thought I better share the photo.
It was sad to see her start having a more 'intense' looking seizure today. In the evenings, she is always a little worse. This evening I was lucky enough to have some time to hold her and noticed the increased frequency of seizures and a new seizure that shook her whole body, and scared me a little. She doesn't like these seizures much, and cries more. I gave her some midazolam, when the seizures started to make her cry, but it didn't even phase her this time. I think she's developed a tolerence to the 'rescue meds'. We'll probably have to ask for an increased dose.
Ashley had a great day - some smiles, some seizures and a good nap. The other day, we had her fitted for some new hand splints. Normally these hand splints are funded every two years, but Ashley grew fast. Her hand is one inch 'fatter' than last year. I'm guessing that it's mostly swelling, but who knows. Her hands and arms are rather puffy. Don't ask me why, because I don't know. It's just the way it is.
Have a great day!
2 comments:
Hi Jolene,
First, Big Hug! I was so happy to read that Hope was doing good and now this.... I can't believe tonight was not good.
I am happy Ashley had a good day. Do you think the swelling is due to the lymph system not moving much....
We will continu to pray for the 5 of you.
Nicole and family
Hey jolene. Good to hear more about what is going on. We're always praying.
Post a Comment