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.

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.

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.

My Little Trooper

So what is all this stuff stuck in and attached to Brooke? She had a ph probe done last week to see where we stand on the reflux front. Brooke has been on Prevacid for a number of years and we are thinking g-tube in the near future so we're just trying to decide if we want to add on the "let's fix your reflux" procedure on while we are at it.

So I took her in on Thursday to have it put in. By myself. With Isabel. This situation had the potential for disaster written all over it. But nope - everyone was perfect. Seriously perfect. Brooke was great - she gagged (for those that might not be in the know that tube sticking out of her nose is going down the back of her throat and her esophagus - so not pleasant) but there was no crying, not one tear, not even any whining. And she tolerated it the entire 24 hours it was in there - with just a few sneezes and nose crinkles (see below):


So now we patiently wait for our results.

Brooke is Special Because...

• she loves our class
• she has a party at her house
• she has a little sister
• she is very tall
• she brings Mrs. Piktel to class (Mrs. Piktel is Brooke's aide - and I love how Brooke is bringing her, not the other way around ;-). )
• she is wearing lots of green
• she has long blond hair
• she likes St. Patrick's Day
• she smiles at us
• she makes us laugh
• she likes to swim in the pool
• and an extra special note from Mrs. Hugel & Mrs. Piktel - she is such an inspiration and a blessing to all of us!

What a special treat to find in Brooke's backpack today. These are from the book that everyone worked on at school yesterday. Thank you so much to Mrs. Hugel and her PM kindergarten class and Mrs. Schoenhoffer and Mrs. Piktel - this project really means the world to us! Brooke loves it and we will always treasure it!

Thanks Everyone!!

Yesterday was the official "Rett Syndrome Awareness Day" in the Olmsted Falls schools! Sherry Davis, one of the family/consumer science teachers at the high school, and her students did a wonderful job of helping to promote awareness. The theme centered around shamrocks and the slogan "don't rely on luck for a cure" - pretty catchy, huh? Teachers were asked to hang shamrocks in their doors and students could put their names on paper shamrocks that were hung in the lunchroom. And they gave Brooke this cool little shirt to wear. One of the biology teachers had their students research Rett Syndrome.

And it didn't stop at the high school. At Brooke's school - her teacher hung the biggest letters ever across her windows that can be seen from the front of the school with the IRSF website and the other students worked on little "Brooke is special because________" projects.

I'm sure there was more going on that I don't even know about yet - but it was wonderful to see everyone come together like that! We are very lucky to live in such a supportive community!!

A big thanks to everyone that participated!!!

Happy Birthday Peanut!!

Six years ago I was probably still sleeping (or at least wishing I was sleeping) at Fairview General Hospital. It was day seven of my stay and I was bloated to probably twice my normal size! It wasn't long from now that our doctor came in and told us to make any calls we needed - they were going to have to do a c-section in about an hour. A strange combination of relief and fear followed. How would you do? You were about to be born into this world nearly 8 weeks early. We had time to get the steriod shots in to help your lungs develop so we just had to hope they were able to do their job.

There were lots of stories from that day but the sound of your crying right after you were born was without a doubt the best miracle I could have hoped for. Lungs were functioning just fine. I only saw you for a few fleeting seconds, all wrapped up. I just remember your pudgy little cheeks sticking out of the bundle and being so shocked that you even had pudgy little cheeks - didn't expect you would have developed those yet. The next few weeks you went about proving what a tough and strong little girl you were going to be. Breathing all on your own, eating like a champ, no problem!

Oh and how did you get the nickname peanut? Well you really kind of looked like the Planter's Peanut when you were born. A head and a belly with skinny little arms and legs and big, big feet!!