vanarnhem411

Tuesday, January 13, 2009

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).
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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!

Sunday, January 11, 2009

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.
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Saturday, January 10, 2009

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?

Monday, January 05, 2009

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 ;)





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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.)

Sunday, January 04, 2009

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!

Saturday, January 03, 2009

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).


video

Thursday, January 01, 2009

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):