Blogs are always more interesting with pictures, so here's one of the girls just for kicks...
I'll go ahead and post the latest update I sent out via email yesterday:
It's been a crazy few days to say the least...full of uncertainty and fear.
The good news is that Milla's swollen mouth was due to a virus and it has cleared up for the most part. We are so thankful it didn't have anything to do with her seizures and/or meds.
Dr. Wheless decided to take her off of the Onfi Monday evening because he felt it wasn't doing anything for her seizures and because it was causing many of her side effects. But it turned out that it really was keeping a lot of seizures at bay. Within 12 hours, she was having well over 100 seizures in a 12 hour period and some mild convulsive seizures as well. She slid downhill fast (although the screaming fits were gone and she slept very well through the 2 nights she didn't have the Onfi).
So, last night, we put her back on the Onfi and today we have seen marked improvement in her seizures (she is basically back to where she was before stopping the Onfi). She is having screaming fits again and was up a few times last night, but her seizures are much smaller and less frequent than they were the last couple of days.
Also, we are going to be admitted back into the EMU at LeBonheur for EEG and video monitoring on Wednesday, June 4th. We were originally told that we would be going next week, then that we wouldn't be able to get in, but then yesterday afternoon, we received a call that someone had cancelled their EMU stay, so we got their spot. We were praying fervently that the EMU would be available next week, and even though we have to wait a week longer, this is an amazing answer to prayer. Thanks be to God!!
I won't get into all the nitty-gritty details, but we were pretty despondent by yesterday afternoon with the plan of action for Milla. But God heard our cries for help and while we are still weary and worried, the new plan has given us a bit of hope and comfort. The heart-wrenching anxiousness and hopelessness has gone today.
Please pray for safety and a speedy 2 weeks as we await the EMU. Please pray that Milla will show all her different types of seizures while we are there. Please pray that her medical team will gain all the knowledge and clarity they need in order to treat her. Please pray for healing but if that is not God's plan, that we would find the right treatment for these seizures so Milla can be (at least medically) seizure-free. Please pray that we would trust the Lord and lean on His promises - that He cares so deeply for His children. Please pray for perseverance for me and Frazer - we are so weary this week.
And here's a picture of the little polka-dotted peanut herself...
So, I actually took them to run around Mud Island today ALL BY MYSELF (which never happens these days). Uncontrolled seizures + a sometimes-obedient-and-very-independent 2yr old + 3:1 ratio = absolute disaster in open places.
And we had a great time with no big incidents, which is amazing in any family with littles! So while the afternoon has been a bit more challenging, I am praising God for the little respite we had. Happy Friday to all!