We packed up and went to Children's Hospital today for a Neurology appointment. It was helpful that our Palliative Care team was able to join us for the apppointment. The team approach is very effective and I feel less pressure this way. Alex and I really wanted something to help Hope on her bad days, when the seizures continue for hours. The plan is to give an extra dose of Phenobarb when it's a bad day (basically give her a phenobarb load), and see if it helps. We really don't want to increase her daily meds because she often has good days, and we don't want to lose her awareness on the good days. It's okay to make her sleepy on the bad days though. Comfort, right? Right!
Hope had some good days on the weekend. We were able to bring her outside again...
4 comments:
Love that smile!!!!
Hi Jolene! We got your blog address from a mutual friend.
What an interesting/challenging read. Great pictures too. You look just like we recall. We've moved to Winnipeg and would be interested in connecting.
Len & Sharon
Len & Sharon, I was soooo excited to see your comment this morning. I would love to connect with you guys and hear how you're doing. The blog doesn't let us leave email addresses, so we'll have to find another way to catch up. My number is in the phone book.
Hope sure looks happy outside!
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