All Settled In

Well, we're here and settled in. This is a great hospital, as far as hospitals go. It's a teaching hospital so you get a new resident and his team at each shift change, etc. But everyone here is very kind and helpful.

Being here, especially in the main waiting areas and reception, really makes me certain that I am a great big baby. Seeing other kids being checked in with pink caps covering heads made bare from chemo, and other kids who are wheelchair-bound makes me feel pretty ashamed for my own fears. She is safer here then she's been in any environment for years, and the care team here has all the stuff they need handy. And even if doctors blink, God doesn't.

The only time I've seen the kiddo anxious was on the elevator up to the room. She had that 'wish I could bolt and run' look for a few minutes, but once we got in and she got a book in her hands, all was right with the world.

Amanda's had her first round of eeg's this evening, but she's wired up to a continuous 24 hour system, and the room has multiple cameras and microphones, which makes us feel weird. The lack of privacy is a bit unnerving.

They used a really strong smelling epoxy-resin type stuff to cement the leads to her scalp, but she took it all in stride and has been pretty comfortable, either with that book or Guitar Hero on her lap most of the time. Bob and Heather were in this evening for a while and Amanda whooped him round after round, as usual. I can't imagine what those eeg's look like when she's playing that thing!

Tonight and tomorrow should be fairly laid back in terms of trying to induce seizure activity. If nothing happens on it's own, they will start pushing her a little harder on Sunday and Monday. We have been told they may do some sleep deprivation stuff, some stress test type things (stationary bikes) and some more strobe lights.

Just now we had our first crisis--the nurse working tonight said we have to limit electronic interaction. She may have to give up the Guitar Hero!! Oh man. Well, that's something else to pray about I guess. :-)

Time to get ready for bed....thanks for reading!

Megan

Here we go....

Tonight is our last night at home for a few nights, and we don't feel like packing, watching tv or doing anything besides sitting around eating Extreme Moosetracks, which Dad just went to Publix to buy.

We are headed out tomorrow morning for a 10 a.m. admission at the EMU. I'd like to say I'm still feeling lots of peace, but truthfully I'm a bit more anxious than I have been so far this week. Amanda is feeling pretty good, and already building her book list for dad to bring. Grandma offered to send a book up, so Amanda is assuming that she will be enjoying lots and lots of luxury reading time over the next few days. Part of me hopes that is true, but I'm told that the sooner she seizes, the sooner we get to go home, get answers, get her back on meds, etc. It is so weird wanting her to have a seizure after 13 years of trying to keep her well.

Here's a pic of her in the pool--it's not real recent but it's one I like a lot.

Well, I'm reminded now and then to be ok asking for prayers. So, I'm asking for your prayers--not for me (though I won't turn them down) but for her. Please pray specifically for Dr. Ess, her neurologist. Please also pray for a short seizure, and for her heart and brain's safety. Pray for them to get all the information they need, and to be able to read it well in order to help us all make a good decision about what's next. Pray however you like--we'll take 'em all.

Thanks friends...time to go have my Moosetracks.

Megan

Counting down...

Well, Amanda's still doing great. She has been on the reduced dosage of medication since Friday and not even a blip, so we are extremely thankful.

Yesterday, we had her IEP meeting at the school. This is where we determine what special accommodations she will need in the upcoming year. She has had an IEP every year since she entered the school system and at times has had physical therapy, speech therapy, occupational therapy, special assignments, preferential seating, daily pullouts, daily organizational assistance, extra time given for tests and assignments, and more.

This past year, she's only had occasional time of out of the classroom and taken tests in a quiet room instead of the main room. She's managed to maintain honor roll grades all year this year. We are all very excited for her.

However, the best part of yesterday was when her special ed teacher told all of us that she is, "On track for a four year college, independent living and self-selected community involvement." Hearing that she will be able to maintain the level of independence that she desires was just like grace raining down on us. What a huge blessing.

Anyway, I will continue to keep you posted about what's happening as we prepare for our stay in the Epilepsy Monitoring Unit (EMU) this weekend. We now are at 2 days till our stay and praying for a quiet time before she enters and a quick stay while we are there.

Thanks for keeping us in your prayers!

Megan