Daddy/Daughter Hike

Curt and Ali have been enjoying Saturday afternoon hikes together lately. They bundle up, pack a lunch and head out to the "forest". Silly little forest girl.

Cupcake Face

Ali and I made cupcakes last week. There was a library book that we got that talked about them so we did that as a fun activity. Lately when she is told to smile you get this scrunched nose, all teeth thing. Still cute as a button! This is what Sawyer did when we told him he could have cupcakes someday.

Hiding Spot

He Stands!

Sawyer stood up on his own for the first time a couple of weeks ago. I saw it and was able to take a picture before he fell over. He was sooooo proud of himself!

Praise! and prayer requests

Curt here. An Allison update. We came home from the hospital last Monday. We are set up with a behavioral psychologist (BP) that is in the same office as the team of pediatric neurologists that we're working with. Seems like a nice balance on the two fronts we are dealing with. After having a horrendous day the rest of Monday and Tuesday, Allison had FANTASTIC days (in terms of mood & behavior) Wednesday - Saturday! Our old Ali was back for the most part! Today (Sunday) has been a bit rougher, but we are starting to really see how missing the littlest bit of sleep really throws her off while she's on these meds. Sleeping at night has gone better (still up once or twice each night; but starting to be better able to self-calm herself and get back to sleep. We have been working with the BP on this and it has helped substantially). Seems that if she can get a good night sleep and a good nap, that the detrimental effects of the seizure meds are reduced during the waking hours. So, the current plan is a very slow (2-3 month) step-down of the one seizure med. causing the behavioral side effects and hopefully getting down to just one seizure med. to control the seizures. Some sleeping meds. are still helping her fall to sleep and the plan is to keep using them, at least until we're off of the one seizure med. Thanks to Kim, Sue, and Kelly for coming to our aid these past two weeks! All drove in from PA. Much appreciated! Chapel ABF folks: we hope to get back into the swing of things in a week or two. Still a bit nervous about leaving Ali in the nursery until we go a bit more time seizure-free. But can't wait to be back!

Specific prayer requests: (1) meds keep her seizure free, (2) she keeps up the good progress (and improves) with the night sleeping thing, and (3) rest and strength for Sara as she rides the ups and downs of Ali while I'm away at work.

Thanks!

Allisoin update 11-8-09

Curt here. Allison has been having insomnia-like issues in the evening and mood/behavioral issues in the day for the past month, likely due to one of the seizure meds (Keppra) she is on. As such, the docs stepped her off the likely culprit fairly fast last weekend and week and then on Wed., she had three seizures at home, the last requiring ambulance service. later that evening in the ER, she had two more seizures, and then was admitted to Akron Children's. That night (wed. into Thu.) she had 5 more seizures while in the hospital. They were able to control them by thu AM and she's been in the hospital since: with Sara and I trading off hospital shifts and home sleeping. The docs put her back on the one med (Keppra) and on Fri., stopped giving her one of the others she was on. She hasn't had any seizures since and if she goes seizure-free today/tonight, they hope to release her tomorrow. Again at home it will be a multiple-month process to continue to tweak the med types/amts in order to find the dose that controls seizures and eliminates/reduces behavioral side-effects. She is on a couple sleeping aids to try to help at night, which hopefully may reduce the exacerbation of behavioral issues during the day. More to come later. Please pray for (1) protection if/during seizures, (2) docs to figure out right med combo, (3) parental peace of mind. Thanks. Curt.

Rough times...

Curt here. We haven't' forsaken the blog! Just having some very difficult times with Ali and dealing with medication side-effects, etc...we've taken some more pics of the kids, etc. and will post as time permits. Pray for Ali that she can start sleeping at night and subsequently for us that we can get some rest as well. Too much of an update to post the whole side-effect story here, but it's not too much fun. Pray that they get her on a combo that (a) keeps seizures at bay and (b) brings the personality & sleep of our little Ali back. 11-3-09