VanArnhem 411

Now THIS deserves a new post!

2009-11-14T21:24:00.009-05:00

Brooke participated in her first official swim meet today!! She had a complete blast! I was a little worried that the whole having to wait our turn and getting in and out of the pool thing might send her over the edge but she was a complete pro! Here are a few pics:

Waiting our turn a la Michael Phelps - you've got to listen to some good tunes before your event, right?:

Getting ready for our first relay event with Mr. Greg (Brooke's pool crush - who she hasn't seen in months). Our partner Eli was already in the pool and did a great job of putting us in a solid lead - only to be lost because Miss Brooke was far more interested in making googley eyes at Mr. Greg instead of actually swimming:

Aforementioned googley eyes:

Happily waiting between events with dad:

Brooke and her loot! And yes there were more than two kids in each of our events (I know it's not about winning but whatever):

Probably my favorite shot of the day:

The family shot that tells me I need to get back to Weight Watchers but the girls are being mighty cute:

I can never say enough about Karen - the Goddess of adapted aquatics! I can only imagine how much work went into putting this event together but it meant so much to all of us for Brooke to get to participate in such a "typical" event!

Spring Update

2009-04-28T00:06:00.004-04:00

So now that spring is finally here (and as evidenced by this weekends near 90 degree temperatures will soon be gone) I thought it would be a nice time for a little blog post with pictures update. Last everyone knew Brooke had received her new wheels so what has happened since?

1. Isabel celebrated her 3rd birthday. All she really seemed to care about was having pink streamers so pink streamers we had (and cake on Hello Kitty plates which she was very excited about since they included a separate section for your ice cream). Part of her birthday gift from Grandma was a trip to her first "show" - Dora Live. Although Mom and I are of the opinion that Isabel looks more like Dora than Dora looks like Dora. Once she got used to the whole dark/loud aspect of the show (and a little bribing to participate with promises of popcorn) she seemed to love it.

2. Easter - we colored eggs without any major mess or incident. Brooke just kind of checked in every now and then (and I think was looking for her opportunity to use her soon to be patented (Doris a little help here) one arm table clearing maneuver. Easter morning was spent following the trail of eggs the Easter bunny left at our house to the baskets (which were conspicuously absent of candy). There was more egg hunting fun before brunch at Grandma's (which is where the Easter bunny obviously decided to leave all the good stuff).

3. Our only real negative right now is some eating issues with Brooke. She had a cold over our spring break (which is now a month ago) and still just doesn't seem to have her regular appetite back. I can tell by lifting her and the difference in the feel of her arms that she has lost some weight already. I will probably call for an appointment soon with our pediatrician to see what she thinks. Oh and the picture to go with this is the one of Brooke and Jeff - you may not be able to tell but we are at Krispy Kreme - if a girl needs to gain weight it's a good place to start. At least that's what my muffin top tells me!

Oh and how could I forget - the picture in the middle of Isabel looking startled - busted on Easter snitching a powder sugar donut from the table and trying to hide in the corner with it. Definitely going to have to keep my eye on that one!

Thank You Ambucs!!

2009-03-16T21:22:00.002-04:00

Brooke's "official" birthday present was a new bike! I found out about an organization called Ambucs from the RettNet and thought - what do we have to lose, let's apply! Ambucs has both a manufacturing side and a charitable side. So they make the bikes (anyone can purchase them) and then fund donations of the bikes through the charitable arm. You just need to fill out the paperwork to get yourself onto the waiting list and when it's your turn - voila, a bike! You can also let people make donations specifically to your child - which we never really got figured out - but we just collected donations from family for Brooke's gift and will send along the donations now to help fund another persons turn. They also have a program where you can agree to turn in your bike when it is outgrown and they will provide you with a new one. At the rate Brooke grows this will most definitely come in handy!

As anyone with a special needs child knows - slap the term "special needs" or "adapted" onto anything and the price will be huge! So it's tough enough finding money to pay for all of the things you need - let alone something that will be fun! One of Brooke's classmates has a similar bike that her family generously lets the school borrow during the winter months. So Brooke has a little bike experience and we knew it was something she would enjoy. So I was thrilled to find a way to get one for her.

We had a nice little break in the cold weather on Sunday so we took her for a spin around the block. And I'm not ashamed to say there were more than a few moments I found myself with tears in my eyes. I can remember not that long ago seeing kids riding their bikes around our neighborhood and thinking it was just another thing Brooke wouldn't be able to experience. I was amazed at how well she kept herself positioned on the bike (we still have a little adjusting to do so things are just right) and that she actually was able to peddle the darn thing by herself! Jeff or I would help her get started and those skinny little legs would just keep it going. I'm sure by the end of summer she'll be a pro!

(And yes mom, I know the helmet isn't on right. We're not exactly travelling at breakneck speed yet so try not to worry!)

Happy Birthday to You!

2009-03-10T08:20:00.000-04:00

The Peanut turns 7 today - 7!! SEVEN!!!

Here are just some random, unshared favorite photos to celebrate the day (which will be properly celebrated with pizza and white cake later!):

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

2009-02-12T19:11:00.000-05:00

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...

2009-01-13T22:48:00.001-05:00

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

2009-01-13T22:25:00.002-05:00

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

2009-01-11T09:56:00.001-05:00

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...

2009-01-10T09:12:00.003-05:00

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

2009-01-05T22:52:00.001-05:00

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

2009-01-05T20:00:00.003-05:00

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

2009-01-04T08:02:00.003-05:00

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!

2009-01-03T08:21:00.003-05:00

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

2009-01-01T22:13:00.006-05:00

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

2008-12-29T23:37:00.004-05:00

(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

2008-12-21T23:46:00.001-05:00

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!!

2008-12-21T22:47:00.002-05:00

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

2008-04-05T23:09:00.001-04:00

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...

2008-03-18T20:58:00.002-04:00

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!!

2008-03-18T07:34:00.000-04:00

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!!

2008-03-10T10:05:00.000-04:00

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!

2007-12-26T14:52:00.000-05:00

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

2007-12-17T18:26:00.000-05:00

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!

2007-12-15T00:06:00.000-05:00

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

A Little Christmas Preview

2007-12-10T00:38:00.000-05:00

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

One Year Ago

2007-12-04T18:43:00.000-05:00

One year ago yesterday was the first time I held you. It was such a happy day for Jeff and I, I'm sure a bittersweet day for your foster family and probably a pretty scary day for you. We've come a long way in a year but it's important to me that you always know where you started.

Some specific memories that still stick in my mind from that first day - the tears in your foster mom's and her daughter, Lillian's, eyes. I could only imagine how hard this was for them. They had arrived early so our agency representative wasn't there yet. It was amazing how much we could communicate without sharing the same language (although we did ask the very nice bellman that had taken us to our room to help translate a bit).

You were facinated with our watches.

You seemed fine with us, even after Yolonda and Lillian left, even after we went up to our room. But when we came back down to the lobby to finally meet with our agency rep - you became very upset. I think it was probably then that you realized the family you had known up until then may not be coming back.

The rest of the day was spent trying to console you. Even though I knew this grieving was something you needed to go through (and that in the end it was a good thing) it was still difficult.

You liked to look at yourself in the mirror so we would just walk around the hotel room looking in each of the three mirrors. You finally gave in and ate a little applesauce which also seemed to help.

I remember you falling asleep on my chest and when you woke up about an hour later looked up at me with your sleeply little eyes and as soon as you focused on my face - you burst into tears again. That was when dad had the great idea of turning on the TV - thinking that hearing spoken spanish might be calming to you. And indeed it was.

Things improved slowly each day and it's really only now that I look back and realize just how long it did take you adjust. And I know those adjustments and bumps will continue throughout your life - but your dad and I will always be there to help you through them.

Thanksgiving Do-Over

2007-12-02T17:11:00.000-05:00

Since Brooke was sick with the flu on Thanksgiving today was officially dubbed "Do-Over Thanksgiving" - also known as great-grandma's birthday party. There was ham instead of turkey but the cute Thanksgiving outfits Grandma bought for everyone were just as cute. And I'm teaching Isabel early about the wonderful world of scrapbooking tools. She caught right on to my favorite - the Revolution. Just need to add a little paper and she'll be on board in no time!

OUCH!!

2007-11-30T15:09:00.000-05:00

Do you see the thing under Isabel's left eyebrow that looks like an extra eyeball hiding up there? We will lovingly refer to that as "trauma d'jour". We had just come in from getting Brooke on the bus and she was fussing around with the kitchen chairs and tripped on one. And I saw in that slow motion vision that seems to come with motherhood when your child is about to do something that's really going to hurt but you are helpless to stop it - her nugget connect with the seat of the chair next to her. Crying ensued, cuddling followed and after a minute or so I tried the old "let mommy see". What mommy expected to see was maybe a little red mark or, heck, maybe nothing at all but I certainly did NOT expect that.

Elfed

2007-11-20T08:28:00.000-05:00

http://www.elfyourself.com/?id=9556480250

Merry Christmas from the VanArnhem elves!!

Our Halloween Miracle

2007-10-31T23:43:00.000-04:00

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!

18 months

2007-10-23T15:54:00.000-04:00

Just wanted to share a few recent pictures of Isabel. These were taken to celebrate reaching the 18 month milestone. And I'm happy to say that Portrait Innovations only got half as much money out of me as the one year mark.

First we have the traditional wicker chair/flower picture. Unfortunately, that was as cute as things got for this outfit. Someday I will learn to tell them to pass on the lame props.

Here is one taken in a dress we purchased while we were in Guatemala. I was trying to guess on the size - too bad we now have a sundress that fits perfectly in October. And rest assured I have already heard about the black background - nobody likes it and I'm the one that told them to use it. I will defend my decision by saying all of her one year pictures had a white background, I thought the dress would look good against black and the kid is cute, she'll look good no matter what color background is behind her.

Here's a sneak peek at this years Halloween costume -

And finally I just had to include this one. It is safe to assume she was saying "booger" at this moment and no I didn't purchase any of these -

Our Friend Dakota

2007-10-20T06:59:00.000-04:00

I'm sure everyone that reads this blog is used to hearing about (or living with) Rett Syndrome. But today I wanted to take a minute to introduce everyone to our friend Dakota and her family. Dakota is a classmate of Brooke's and is battling Tay-Sachs disease. Never heard of Tay-Sachs? I hadn't either until I heard about Dakota. So I wanted to pass along an email I received from her mom and dad with some information and links to the Cure Tay-Sachs Foundation website.

Please be sure to watch the video - it's very powerful. And for those of you that feel you have a vested interest in Brooke or Rett Syndrome and have committed your donations or fundraising efforts to that cause please think of this - medical research committed to finding a cure for one disorder has the potential to help many others. If you spend a little time on the website you might be surprised by some of the similarities shared by the two disorders. You never know how all of this will ultimately connect.

One thing I do understand is how important it is too make people aware of these "unheard of" disorders. Dakota's parents have done an amazing job getting the foundation off the ground and getting the word out. I'm so proud of this family - they really do inspire me to think of the difference just one mom, one dad and one sweet little girl can make in this world. I know I can take a lesson from that, I'm sure we all can.

Dear Friends,

As many of you know our beautiful little girl Dakota continues to battle Tay-Sachs disease. We have created a video to introduce the world to our very strong little girl. Dakota is now 8 years old and was diagnosed with Tay-Sachs disease just over two years ago. Tay-Sachs is a genetic disease that has no treatment or cure, and is ALWAYS fatal in children. Dakota risked her life nearly two years ago when she went through a very painful and complex cord blood transplant where all her blood was replaced with new blood, with the hope of eliminating the disease. The transplant may have helped, but the disease is still there. Dakota has been nicknamed the “Hope Child” by other Tay-Sachs parents because of her courageous battle to beat this horrible disease. But the clock is still ticking….

We have medical specialists all over the world that we are in constant communication with that have assured us that the cure is within reach! The challenge is the funding necessary to convert theory into clinical application. We have become involved with the Tay-Sachs Gene Therapy Consortium that has created an international team of experts dedicated to converting hopeful animal models into useful human clinical trials. We have no choice but to take matters into our own hands and raise the monies needed to potentially save the life of our daughter and her many terminally ill friends around the world. We need to find a cure for this disease so future generations of children like Dakota and families like ours don’t have to endure this agony.

With the help of our family and friends, we have started a fund raising campaign called “Dakota’s Dream,” designed to raise money for the Cure Tay-Sachs Foundation (which is a 501(c)(3) tax exempt foundation). We are declaring November “Dakota’s Dream” month, where corporations, schools and churches from all over are collecting money on our behalf. On Saturday, November 24 we are organizing children of all ages to collect money in their neighborhoods to support Dakota’s Dream. We hope to have 1,000 kids each collect $100 on this day. Hopefully we will surpass that number of kids helping other kids.

Please take 5 minutes of your valuable time to watch the DVD that was made to give you a small understanding of the magnitude of the situation. Yes, we need money. But more importantly we need to educate people about Tay-Sachs disease. After you view the video, please feel free to pass this e-mail along to anyone and everyone you know. The disease is found in every part of the world, among all races, religions and genders. This is one disease that we CAN and WILL find a cure for in the next few years - but only with your help.

Thank you for taking the time to listen. Please watch the video and visit our web site for further information about Tay-Sachs disease and how you can be a part of Dakota’s Dream on November 24, 2007. Thank you and God bless.

Link to Dakota’s Dream video: http://www.curetay-sachs.org/dream.shtml

Link to Cure Tay-Sachs Foundation web site: http://CureTay-Sachs.org

Ken and Julie Bihn
Olmsted Falls, Ohio

Hey it's only been two months!

2007-10-18T23:32:00.000-04:00

Finally got around to loading the pictures from Brooke's first day of school. As you may or may not know, I wasn't actually there so Grandma took the honors. And she did a fabulous job - how darling does Brooke look in her cool shades and rockin' apple shirt! The pants were kind of a funny story though. I had forgotten to lay out the very specific first day clothes before I left so I called mom and just told her it was the apple shirt and there were denim capris that went with it. After I was back I was organizing Brooke's closet and realized the capris still had the tags on. We hadn't had the pictures developed yet (Grandma still has a film camera if you can believe it!) so I just assumed it was too warm for the pants and the executive decision was made to go with shorts. Cool. When I did pick up the pictures I was all "oh what pants are those?" - only to realize that Brooke was wearing a pair of Isabel's jeans. Yes, those are supposed to be full length pants on an 18-24 month old. I suppose this is proof that Brooke might just be a little too skinny!

STOP THE MADNESS!!!

2007-10-17T20:48:00.000-04:00

It seems a public apology, or maybe just a clarification, is in order. A few days ago I posted a list of Isabel's words she is saying. One of them was Connie (aka - World's Greatest Aunt). I mentioned how each time the phone rings Isabel says Connie which is funny because she rarely calls.

Maybe my choice of words could have been better but dear, sweet, wonderful, fabulous Aunt Connie seems to have taken some offense to the comment and has since called EVERY SINGLE DAY. Now I certainly don't mind a little daily chat with the WGA (remember that's Worlds Greatest Aunt) but I don't want her to feel that she has to call out of obligation.

Maybe what I should have said is that Connie doesn't really have reason to call all that often but we are thrilled every time we see her name on caller ID? Better? I guess we will find out tomorrow during the WGA calling hour.

2007-10-13T20:59:00.000-04:00

A face only a mother could love, right? A little bit sticky but well worth the five minutes I was given to clean up after breakfast while Isabel ate yogurt with her fingers. No pleading "uppie", no grabbing dirty knives out of the dishwasher, no climbing onto the table, no trying to eat "leftovers" from the floor. Yep, definately worth a quick wipe down with a wet paper towel.

2007-10-12T13:42:00.000-04:00

How much does this kid love to swim? No school today so we went a little later which gave Brooke the chance to swim with her new little buddy, Kevin. She was quite smitten. There was some singing together and pushing a ball back and forth to one another (something Brooke has been doing really well in the pool lately - yay!). And in the end resulted in some serious tears when it was time to leave (or maybe it was because I didn't actually follow through on the idea of leaving Isabel behind in the play room).

Snacks and Sisterly Love

2007-10-08T21:59:00.000-04:00

So how cute are these two?! Isabel was sitting at the table having a few pretzel fish crackers and juice and Brooke decided she needed in on that action! It's pretty amazing to me on both sides really. The fact that more often than not if Isabel is eating at the table and Brooke is not, that Brooke knows she just needs to stand by and her sister will share. And the fact that Isabel totally shares with her - in a gentle, not jamming-20-crackers in-her-mouth-at-a-time kind of way.

We thought long and hard about whether adding to our family was the right thing to do. Would it be fair to Brooke, to a sibling, could we handle it? And although I will admit to a few "what the heck was I thinking" moments so far, overall it's been a good thing. There is definately something about watching another kid do it that gets Brooke more interested in things. I can't even tell you how many times I tried to get Brooke to sit and try to color with her little dot markers with me and every single time I felt like I was forcing it on her. Isabel wants to color and guess who's right there with her. And these little moments of being the helper are nice to see in Isabel. I'm sure there will be times Isabel is going to be tested having Brooke as a sister but I guess my hope is that in the end it's the acceptance, patience and compassion that she really takes away from it all.

So if fish crackers and juice are any indication - I think we're headed in the right direction!

Chatty Cathy

2007-10-05T22:46:00.000-04:00

I'm back again! And it was nice to see a comment from another Rett mom that I didn't even know read the blog!

In an effort to make the reporting of this blog fair and balanced, today will be all about Isabel. Specifically all the talking. You may have noticed that my daughters are about as opposite as opposite gets and so it only makes sense that non-verbal Brooke would be complimented by never-shuts-up Isabel. But believe me I'm not complaining. So as she reaches the 18 month mark here is a list of current words (if significantly different the "Isabel pronounciation" has been included):

Mommy
Daddy
Brooke (can be easily confused with book)
Book (see above)
Grandma (ama)
Connie (although she rarely calls - every time the phone rings it's Connie)
Tom
Julie (dewy)
Dog
Puppy
Kitty Cat (kit cat)
Neigh Neigh (this would be horse - it's the only one that is referred to by it's sound rather than name)
Cow
Bird
Fish (fishy)
Duck
(she also makes all the appropriate animal sounds to go with each - well except the fish)
Pancake
Banana (nana)
Yogurt (ogur)
Juice (all drinks are "juice" right now)
Hot dog (dot dog)
Chicken
Cracker (kaker)
Applesauce (abus)
Bean
Dora
Elmo
Potty (sometimes sounds like buddy)
PeePee
Stinky (tinky)
Booger
Color (colur - comes out with this weird, almost French accent)
Diaper (diapur - same thing with the French accent)
Crayon (can)
Bubbles
Push
Bus (there's a little lisp on the s)
Shoes
No (this is the verbal answer to everything, if the answer is yes you get a head nod)
Spoon (poon)
Pumpkin (punken)
Ball
Flower (fower)
Open
Broken (boke in)
Play (she's just starting to get the "L" in there - it's pretty funny looking)
Baby
Blanket (bankit)
Brush (sounds very much like bus)
Train (tane - and corresponding choo-choo)
Plane (pain)
Messy
Dirty
Up (uppie)
Night night
Kissing
Bottle (baba)
Nose
Eyes
Uh-oh
I don't know (I no-no)
All done
Shopping (dopping)
Purse (pursh)
Corn (orn - only in referrence to our cornstalk decoration outside)
Swing (hwing)
Apple
Pretties (dittys - this means jewelry)
Swimming (whimming)
Hi (as said to every person that walks by every place we go)
Bye (as in goodbye_
Bye Bye (as in we're going someplace)

And my new favorite:

Awesome (awthummmmb)

I'm sure I'm forgetting some (and I'm sure Mom will add them in her comment!)

The Golden Ticket

2007-10-05T22:28:00.001-04:00

Okay so I haven't gotten around to making it pretty but at least I'm posting something!

One of my many struggles when thinking about all things Brooke is the struggle to find GOOD therapists. We have our one shining star, Miss Karen, who swims with Brooke every Friday. All others have fallen someplace between okay and bad. So I finally had the brilliant idea, if I do say so myself, of actually asking Karen if SHE had any good referrals. And she did. Glenna Greenwald, Speech Therapist Extraordinaire.

Now to be fair we haven't even seen Glenna Greenwald, STE yet but I have high hopes. Why the high hopes you ask? Because 1) Miss Karen, Swimming Instructor Extraordinaire recommended her and (this is big) 2) because when I Googled her name to find contact information, the first thing that came up was a newsletter article about her work with a little girl named Maya who has, drum roll please, RETT SYNDROME!! Just the thought of not having to start at Rett Ground Zero with another therapist sends shivers down my spine!

Glenna did call me yesterday and we chatted about Maya and the other THREE Rett girls she is currently working with. And from that ten minute conversation I feel pretty confident that this lady gets it and, most importantly, she is excited about working with Brooke. So hopes are high and now we just need the lovely Nadine to call and actually schedule us.

Welcome!

2007-09-30T18:37:00.000-04:00

This is our new home - because, well, it's free and we are, well, poor-ish so the $90 for Typepad was cut from the budget.

I'll work on getting things pretty and, what the heck, maybe actually post something now and then!