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).

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.

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!!

A Little Christmas Preview

There's been lots of talk on the RettNet (our online link to other families touched by Rett Syndrome) about Christmas. Mostly about how difficult it can be since our girls don't typically find the same joys in the holiday as other kids their age. There have been some great discussions about helping them find their own kind of joy. One of my favorite quotes is from a dad named Scott:

"Maybe the girls are still pure to the real meaning of Christmas and have not been corrupted by the commercialization of it."

As soon as I read "pure to the real meaning of Christmas" it made me think of this picture (one of many I took in my annual "attempt-at-the-perfect-Christmas-card" photo shoot. Although it didn't end up the final winner, I think it embodies that quote perfectly.

Anyway - I've really wanted to start learning how to make my photos look a little more artsy fartsy (but I'm too cheap to buy the actions to do it for me). So here I am up way past midnight playing around with this wonderful shot - enjoy!

This is the original photo:


These have what I guess is referred to as a little color pop - I just added the dark edges on the second one:


These are supposed to look vintage (again with the dark edges on #2):


So I guess I'm pretty happy with the outcome.

The tutorials for the original effects I found on this blog:

http://jessicabell-tutorials.blogspot.com/

The tuorials for the dark edge effect was from 2peas:

http://twopeasinabucket.kaboose.com/cg_display.asp?g=4&seed_id=21818

Our Halloween Miracle

Here it is folks - that's right, Brooke SMILING on Halloween night! For those not in the know - Brooke historically hates Halloween (and I have the pictures of her crying every year to prove it). This year started out a little rough (thanks in part to Isabel's meltdown at the suggestion that we leave our neighbors dog, Bently, and continue on for more candy) but it was a fairly quick recovery, a short nap in her completely decked out ride and the remainder of the evening a happy little witchy-poo!


The Chicken's favorite portion of the night seemed to be handing out candy with grandma and great-grandma. She was in charge of the suckers.

Overall one of our most successful Halloweens to date!