You don't need a $10,000 piece of AAC equipment to know what Brooke wants here do you?

There are very few things that Brooke will actively seek out a way to ask for - reading her Dr. Seuss books, however, is at the top of the list. If a pile of them are ever left out on the floor she will make her way over to them for a "stare down" or some swatting. So even on days when I find myself talking in Seuss-ical rhymes because I've read so much I can hardly say no to this!

Wishful Thinking...

Because we are experiencing temperatures in the single digits (without considering wind chill) and I am very much missing summer right now - here are a few cute pictures of the girls at Huntington Beach.

I can distinctly remember that Brooke had a really good day when these pictures were taken. The smile you see was not coerced in any way. I was standing next to her in the water really wishing for every single day to be just like this. While Isabel was busy making "kitty food" with the sand. It was a perfect day (except for the small matter of being the day Bennigan's closed - it was our planned lunch destination and I was just a little bit sad I would never again enjoy a Turkey O'Toole sandwich).

Reality TV and Rett Syndrome

I'm really not much of a reality TV watcher (although that's getting harder to do since it seems that is all you can find on TV these days!). But there are two shows I will be tuning in this season:

American Idol - some of you might remember Angela Martin, a fellow Rett mom, making an appearance on last seasons show. She made it to Hollywood but not past the first round of cuts. Well word is she is going to be back again this year so let's tune in to see how far she can go this time around!

Celebrity Apprentice - Clint Black will appear in this season and his chosen charity is the International Rett Syndrome Foundation. Go Clint!

And finally - this isn't reality TV related but it is Rett Syndrome related and amazing so I'll share in this post. Just before Christmas break there was a stall day at Jeff's school. If you're not familiar with the idea it goes like this - kids bring in loose change (pennies were excluded) and their teachers have to roll the change before class can start. Money is then donated to a charity - in this case IRSF. Cool idea, huh? So I'm thinking that's cute, they'll raise a couple hundred dollars. Well Jeff just informed me that the final total was over $5,000!!!! That is a whole lot of change people!! So a big huge hug and thanks to all those students and teachers at Olmsted Falls High School for a job well done!

The Jeff Update

What you didn't know there was one very lonely male member of our family? He's still managing to maintain his masculinity even though each time he uses Cherry flavored Chapstick in the car Isabel can immediately smell it and says things like "What's that smell? Is daddy putting on his lip gloss?" or that we just got our new Visa cards in the mail (the ones that support breast cancer research in some way or another) and they are pink. He's just so manly stuff like that just bounces right off of him (although I think I'll see if I can at least get the poor guy a new credit card).

So what's new with Jeff?

Still teachin' the old math at Olmsted Falls High School. He's also been teaching classes to other teachers (on exciting topics such as Smartboard's and the latest offerings from Texas Instruments - and yes that is a TI Nspire attached to his hip in his super-cool-no-geek-can-live-without-it holster.

He has been named Ohio's Technology Teacher of the Year. Which really, no sarcasm here at all, is very cool. He works extremely hard to make his classes exciting and uses new technology to help make that happen. We'll travel to Columbus next month so that he can receive his "major award" (it's still close enough to Christmas that I can make Christmas Story references, right?).

He's discovered the joys of fleece pajama bottoms this winter.

Oh and he's turning the big 4-0 on the 27th of this month - but he's trying to ignore it in hopes that it just won't happen.

Isn't she lovely...

What do you think of the blogs new facelift? It all started with a comment from my friend Libby about these blog kits from Zoe Pearn. When I saw the colors and design of this kit I was hooked!

I suppose it takes a certain comfort level with blogging, computers, etc. but really the instructions provided with the kit were fantastic and very easy to follow. I even got adventurous and edited some of the html code myself - Jeff was impressed. It really was the smartest I've felt in a long time (the jury is out on whether that is a good thing or a somewhat pathetic thing).

Since the blog looked so pretty I went ahead and added some more links over in the sidebar. If you've got a blog that I don't know about send me a link and I'll add you in. Still need to work on that profile - how would you describe me?

Pardon the Technical Difficulties

Here are the pictures that are supposed to be with the following post - apparently they didn't link correctly -and by they, of course, I mean the pictures because it's their fault - certainly not mine ;)

Christmas Recap

So far the best picture of our tree I've ever taken. This years decor was still the "unbreakable" theme. I'm just not confident Isabel gets how much mommy would cry if she broke her vintage ornaments - so the foam balls covered in shiny string from Target made another appearance.



Every now and then I catch Brooke is her "eyebrows up" pose. I love that look. And I love how much Brooke enjoyed Christmas this year. Thanks to the pre-holiday sickness and seizures she was a happy little elf and unlike most years really enjoyed all the holiday hustle and bustle. It was the best gift I could have ever received and I enjoyed every minute of it. As of today the honeymoon period is pretty much over. We have an appointment on Wednesday to see yet another neurologist to get yet another opinion. I'm making it my mission to figure this out in 2009. I want everyday to be like Christmas for her.



Isabel started to get the idea of the holiday this year (and I know she isn't wearing any pants in the picture but we were in potty training mode and that was just easier - and speaking of potty training, Isabel pooping on the potty for the first time on Christmas was the second best gift I got. See how easy I am to please?)

My favorite Isabel story from this Christmas? When we first starting talking about the idea of Santa bringing gifts she said she wanted a computer (because her friend Lily has a Barbie one). This lasted for about a week until Jeff got a pedometer from school (some kind of fitness program I think). She thought it was the coolest thing ever and called it a "walker". So from that point on whenever you asked her what she wanted for Christmas the answer was "a walker". So we were going to visit Santa and I asked Isabel if she would help Brooke and tell Santa what she would like for Christmas too. I told her Brooke wanted a Pink Ipod Shuffle to listen to her music. So the big moment arrives and the girls are happily sitting on Santa's lap.

"What would you like for Christmas girls?" asked Santa.

"Brooke wants a pink shovel and I want a walker" replies Isabel.

Rest assured I helped interpret that for Santa but it will go down as an all time favorite Christmas memory.

And I leave you with this final shot taken on Christmas evening - maybe not the most festive but definitely one of the funniest. (And in case you don't recognize him from Target's Halloween display this past year - that is Domo. Isabel looooooved Domo - and no, I don't know why.)

Questions

Just to answer a few questions on Brooke's swimming -

She does hold her breath when she puts her face in the water - it seemed to be one of those things she knew to do instinctively at first. She's built up the amount of time she can "stay under" the longer she swims. I would imagine this would be different for every child - her little sister is way more timid about putting her face in the water.

I honestly have no idea what Karyn's formal training is - she is not a licensed therapist (like an OT or a PT). Her title is adapted aquatics instructor - but I don't know what kind of training that entailed. We found her by recommendation and just really, really lucked out. Although she had never even heard of Rett Syndrome before Brooke was diagnosed she is better than just about any licensed therapist we have worked with at getting Brooke to respond and do things.

And the water she swims in is very, very warm - pretty much like swimming in a giant bathtub. She only gets cold when we get out of the pool and into the locker room where it isn't as warm. But nothing her nice cozy bathrobe and a quick dressin' mama won't fix!

And while I'm at it I'll update everyone on the old post about Brooke's g-tube and ph probe. The probe ended up showing - no reflux whatsoever. That's my little exon 1 girl always bucking the trends! (Exon 1 is the location of Brooke's mutation on her MecP2 gene - and it's very rare to find mutations there so we always chalk up her differences to the typical Rett kid to that).

And the little booger gained 5 pounds before our next clinic visit so the g-tube was put on hold too. I have to say there was a big relief that we didn't have to have the surgery but also a wee bit of disappointment because I had really convinced myself it would be a great thing for her. She's been holding pretty steady at that rate and for now Dr. Motil is happy with it. And when Dr. Motil is happy, everybody is happy!

Dive In!

Here's the video of Brooke diving into the pool. The dive happens pretty early in the video and there isn't that much exciting after it - just Miss Karyn trying to get Brooke to put her hands on her shoulders (that's the cue she wants to do something again).

Color Inspiration Challenge

Here's something a little different -


As some of you may know I'm a pretty avid scrapbooker/papercrafter person. It's my release - something fun and relaxing over which I have complete and total control (unlike most everything else in my life!). I visit tons of crafty related blogs on a regular basis (I probably I spend more time being inspired by others than actually creating things myself). So I thought I would share a new find with everyone today.


This blog is authored by Kristina Werner and I'm not even sure how I originally found it. She works for Stampin' Up (a company I seem to be developing a new obsession for - I think it has to do with all the matchy stuff they make - nothing makes me happier than perfectly coordinated supplies). She posts a weekly color inspiration and matches Stampin' Up colors to the piece.


I'm going to try and make a card each week based on the challenge - my goal is to buy zero greeting cards in 2009. It's ridiculous considering the supplies I have on hand to spend a cent on a premade card!


So here is this weeks inspiration:





And my card (sorry the scanned colors are a little off - it's brighter IRL):

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!!

Merry Christmas!

So we're a little late but we just wanted to wish everyone a very merry Christmas! Overall a pretty good day here - but really how bad can a day be when we all have matching pink bunny jammies? Well I should clarify that Jeff did not have pink bunny jammies.

Something strange happened to Brooke's hair the last two days - seriously I really did brush it before we took pictures (I busted out the conditioner last night so it's been a little better today). Isabel tried to help but still couldn't do a thing with it.


So a pretty quiet day at home for us this holiday. Brooke seemed to enjoy her idog - the jury is still out on whether or not it was the dog or just her favorite music making her happy. Since she really can't open presents or play with many toys we let the joy of her day be having the things she loves as much as she wants. So we pretty much listened to Ralph or watched Elmo the entire day. And ate lots of sweets. All of these things generally have a daily limit - but not on Christmas!

Isabel loves her Dora kitchen. She's been a very busy little chef - I love hearing her say "cook it" and making all her own little cooking noises. The fact that we have finally found a toy that kept her attention for more than five minutes was gift enough for mom and dad.

And the "girls" got mommy some very nice acrylic stamp sets for Christmas (even though they weren't supposed to get anything!). It really did mean so much to me that Jeff took the initiative to ask around to find out what I might like AND took Brooke shopping to get it for me. We promised no gifts this year (and even when we do it's usually the time honored tradition of asking what I want and getting exactly that) so it was a very nice surprise.

Snowbunny

Isabel didn't really get the chance to fully appreciate snow last year - I wasn't sure her delicate, closer-to-the-equator sensibilities were ready for it. After getting Brooke off to school today she was really in no mood to go inside so I figured what the heck and grabbed the camera. Who needs snowpants when you have sweatpants (at least she had boots on, right?). So I guess we'll make a trip to Target for some snowpants for the girls and maybe even a sled. Now we just need to figure out a way to convince Jeff that you really can have fun in the snow - he will not be easily swayed.

Aw-thumb!

So I was really just curious if I could figure out how to get video clips on to the blog - pretty easy actually. Enjoy!