vanarnhem411

Monday, December 29, 2008

Isabel Update

(Sorry everyone but you're going to have to live without pictures for this post - one of our "Christmas Break Projects" was some computer maintenance and it has left all of my pictures in a giant, unorganized heap on our new external drive - so just use your imagination!)

What's new with Izzy?

1. She is peeing and pooping regularly on the potty! I actually don't even have any pictures of that - although I was sorely tempting to bust out the camera during our own little Christmas miracle of her first #2 on the potty. I have found that just telling to her go herself has worked much better than taking her and sitting with her - this was stumbled on accidentally while I was helping Brooke with breakfast and just couldn't go with her. We've even taken a few trips out of the house in underpants without any accidents!

2. She is full on into the "why" phase. It is a constant barrage of questions the entire day. I'm sure in the big picture this is a good thing - but I spend my day in constant pursuit of the answer that will be followed by the simple "oh" response rather than another "why" follow-up.

3. She was really into Christmas this year - lots of cute little Izzy-ism stories from this season that I'll save for another post - like why did she ask Santa for a walker.

4. She's also developing a little attitude which has landed her on the naughty step a few times.

5. She is very much into the Imagination Movers (for those not in the know it's kind of an American/Disney Wiggles knock-off). Four guys with a show built around mostly tolerable kids music that stays stuck in your head the entire day once you start singing a few bars. It seems that Scott is her favorite.

Sunday, December 21, 2008

The Brooke Update



So let's start with a Peanut update -

1. We are now the proud owner of two giant front teeth (a great improvement from our poor little ground down, banged up front teeth that just overstayed their welcome).

2. We are still riding the "mood roller coaster". For those not in the know - after Brooke has a seizure (usually when she is sick) she is the happiest camper ever for about the following one to two weeks - calm, alert, patient - let me say that again PATIENT. Then it's back to the screaming, anxious Brooke until the next time. We're still trying to figure this out (and if there are any other Rett mom or dad's reading this with insight, feel free to share). We spent Labor Day weekend at the Cleveland Clinic for a 48 hour EEG to learn basically nothing new (I'm going to add this to a topic list for a later post - there are some good stories to share from that adventure - even though an answer to this puzzle wasn't one of them).



3. We are still swimming every week with Miss Karyn - and seem to have mastered the dive from the side of the pool trick. It's really pretty cool to see - maybe not as cool as Edda feeding herself a pear with a fork, but still pretty darn good. (I might even have video - I'll add that to the same list mentioned above).



4. We are also seeing Miss Glenna (you may remember her as speech therapist extraordinaire) every week. And have added a great speech camp for non-verbal kids to our agenda that we found about, oh, five minutes from home at a local college (that Jeff and I both attended no less). I think we're making some progress in the communication world - but if we could get a handle on #2 (and by that I mean the item listed above - not pooping - although that wouldn't hurt either) it would help move that forward tremendously.

5. School is going okay - mostly made difficult by that pesky #2. Brooke does have a new aide this year, Mrs. Blair, and she seems to be quite attached to her. It also seems that she is handling her time in the typical classroom better than last year. So although I still wish we could be doing more - I'm happy for those little improvements and realize the challenges we need to overcome.

6. Right now Brooke is getting over the sick we've all had lately. This has meant seizures for her. She usually has an extremely resilient immune system and is over stuff like this in just a few days but this time it's really hanging on so more seizures than usual. And as much as I hate to see her go through them - this means we are now in the "honeymoon period" of our seizure/mood schedule. Which, honestly, could not have timed out better with the holidays. All of this usually annoying and hard to handle change in Brooke's routine has been a breeze. So I'm just going to enjoy it while it lasts and let Brooke do the same.
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Good Morning Mom!!

Today's title is for my mom - who even though I haven't posted on this blog since April(!) still checks every morning as part of her routine just in case there is anything new. I haven't yet convinced her to try the wonderful world of feeds - but I sense that might go the same way our Quicken "keep-your-checkbook-on-the-computer-it-will-be-so-much-easier" experiment ended so I'm not going to push it. But I still appreciate her dedication and finally felt guilty enough to post something.

I took a hiatus from blogging because I found myself particularly overwhelmed this year and something just had to give. Are things better? Well it's just days before Christmas and my gifts are wrapped, the house has a reasonable amount of Christmas spirit showing via trees and other decorations and I've made a pretty good dent in my Quickutz projects that are due January 2nd (all this even though our house has been the resting place for every kind of sick imaginable for what seems like forever). So I guess that means I have a better handle on things than usual, right?

So maybe I'll try to post some updates over the next few days so that everyone is current on all of our shenanigans and we can start the year off fresh - a peaceful and calm 2009? I suppose anything is possible.