SRSA Conference

Avery, Gigi and I are headed to Birmingham to the Southeastern Rett Syndrome Alliance Conference. They are expecting over 30 families. I am very excited to meet other rett girls. I will finally get to meet Riley and Erin (and the rest of their family). Thad and Cole are having a guys weekend. It is good for Thad to play the role of caregiver once in awhile! :)

I am taking my laptop and camera so expect an update or two.

Wiggles 2

We had a blast! We were so close we could see sweat flying off of them! My posters were a hit. I was going to take pictures of them but my battery is dead. I took 115 pictures last night!

Here are a few.

Kelly-I added a good one of Anthony just for you!

Wiggles

Tonight is the big night. The Wiggles concert. Cole's most FAVORITE thing in the world besides his Gigi. We have been preparing for this magical night for quite some time. Cole got a purple Jeff Wiggles shirt for his birthday in May. He also has been watching all the movie brushing up on his Wiggle lingo. He has been coloring pictures of the wiggles, acting out scenes from the videos, alternating between personalities (red, yellow, blue, purple shirt changes several times a day!). We even made posters. (pictures to come!)


This isnt our first rodeo though. Actually it is our 3rd. Sadly I think it will probably be cole's last wiggles concert. The show didnt sell out so Im sure they will scratch it from the schedule.

PT pics

more pics!

Pt with Bubbles

Today Ms.Cindy and Ms. Alisa used bubbles to get Avery motivated! Most days she is really irritated that we turned her movie off but today she forgot about it. She would let Cindy do hand over hand to put the wand in the bubbles and was even initiating leaning over to do it.

Fun Times!

Thad's best friend, Trevor, was in town this weekend. We had friends over last night for a BBQ. Cole had a blast entertaining everyone with his singing, dancing, guitar playing and over all goofy antics. Avery was the diva who wanted "her" T.V.(meaning the main TV in the living room). I finally set the portable DVD up in the corner so she could be with us but watch what she wanted. The T.V. was being used for Guitar Hero!

Cole really hit it off with Mary-Allison. He is such a flirt! You better watch out Andy, Cole's going to steal your wife!

We don't get to see Uncle Trevor very often but he always seems to pick up with the kids right where he left off. Avery loved being snuggled in his arm!


Here is a sweet picture of a very tired Avery with her daddy. She doesn't normally fall asleep being held. She wants to be in her bed.

Snaggle-tooth

Cole lost his first tooth while we were gone(I didn't even know it was loose!). Unfortunately, the tooth fairy didn't visit. There was nothing to put under his pillow---he swallowed it! I told him we would leave a note with the next tooth and see if she will leave a little extra!

PT in pictures

Avery had PT and OT today. I think the pictures speak for themselves as to Avery's mood!

Enlive

On top of loving Kelly for who she is, I love her because she put an entire pound on Avery in 3 short days! She introduced us to a great product that I thought some of the other Rett mom's might like to know about. It is called ENLIVE. It is a 300 calorie, 8 oz apple juice box that Avery loved! She orders it from Walgreen's by the case(the cheapest place she found). It is slightly thicker than regular apple juice so it is doubly great for our girls. The other thing that we learned Avery loves is Nesquik! She drank and ate more on our trip than she ever has!

Home

After 12 long hours, Avery and I finally made it home! I was glad to see Cole and Thad but sad that I had to leave Kelly and Brooklyn (and Charlie and Harley!!). I never in a million years would have thought that a bond could be formed so quickly!

They were even more awesome than I expected! They opened their homes and hearts to me and Avery. You don't find people like that very often. I am very lucky!

We promised that this wouldn't be just a once in a year event. We are already brainstorming where to meet next!

The last day in Indiana

Hi!
This is Kelly, I told Carrie I would log in and post a few pictures so that all of you that check Avery's blog daily would not have to be disappointed today since they are traveling back home. I just talked to her and they are in the car and headed south! I posted some pictures to Brooklyn's blog too you can click over there to see more photos! We LOVED having Carrie and Avery here with us. I was so sad to see them go!

Best Buds.

This picture might be the sweetest picture ever. Both girls (like so many rett girls) LOVE The Wiggles. They were completely oblivious to our rampant picture taking. The Wiggles are like crack to our girls! They really cant get enough!

Video

We have a really cute video of the girls but it took FOREVER to load on Kelly's blog so I'm just going to cross link it!

Here's your fix!

I won't bore you will a lot of small talk so here ya go! What you all have been sitting on the edge of your computer chairs waiting for---pictures of our BEAUTIFUL girls!
Be sure to check out Brooklyn's blog for more pictures!
Avery couldn't figure out how to get closer to Brooklyn and stumbled over her stander.
I call this her cheerleader pose. Go Lions!
Avery amazed by the quirky antics of The Wiggles.
Bath time fun!
Mrs. Kelly was telling Avery something VERY interesting.
Avery was amazed by Brooklyn's bath toys. Pour kid gets a cup to play with at home. Avery, I promise Mommy will work on getting you the hook-up!

First of many!

More to come I promise! Had to post this super cute picture of the girls in their matching shirts!

we FINALLY made it!

After an exhausting day of travel, we finally made it safely to Angola. Kelly and Brooklyn are so sweet. Brooklyn is just as cute in person as she is online. The girls stayed up past their bedtimes last night getting to know each other.

Pictures are coming soon, I promise. I will update later today!

Instant friendship!

This time tomorrow, Avery and I will be on a plane headed to Indiana! I am so excited I can't concentrate on everything that needs to be done!

When I first came across the Butler Crew on Youtube I never would have thought that I would make a connection to last a lifetime. Kelly and I hit it off from the start. There are people in life that you come in contact with that you feel instantly connected to, like they have been in your life forever. That is how I feel about Kelly. We are kindred spirits, bonded by a common heartache.

Still sick.

Cole is still running a fever, throwing up and has an upset tummy. I hope that he starts feeling better today. I am trying my hardest to keep him contained to his room. I really don't want Avery to get it. She can't afford to lose any weight. For that matter Cole can't either.

Please say a little prayer that he starts feeling better. I leave for Indiana in 75 hours (but who is counting?!?!?).

Cole is sick, again.

UGH! Cole woke me up at 5:30 this morning and was on fire. My skin sizzled when he touched me! He said that his stomach and neck hurt. This usually means his throat. It never fails, right before a trip he gets sick. Hopefully I can get him feeling better before I leave on Thursday.

On a happy note, Avery actually had a normal poop this morning!!! I know that some of you are thinking that happy and poop probably shouldn't be in the same sentence. Walk a day in my shoes and you will quickly find out!

Injury

This morning Avery fell and put her tooth through her lip. In the process she also chipped part of the tooth. Hopefully it is just superficial. I don't know if any of you have ever heard Avery cry, but it is the most pathetic thing ever. It is more of a moan and whimper than a full on cry, very weak. She doesn't cry very often. She must have the pain tolerance of a warrior.

Thad and I decided then and there that we are getting rid of the entertainment center in the living room. Every accident Aves has ever had involved that stupid piece of furniture.

A couple of pictures of her battle wounds. (sorry Kelly, all I could produce!)

Counting down

7 days until we go to Indiana to see Kelly and Brooklyn!

We are so excited!

No more early rising!

YAY! Avery-doo slept until 7:30 this morning. She was up at 6:30 but I ignored her and she went back to sleep. Hopefully this broke her habit.

Woo-hoo

Avery let me sleep until 6:30 this morning! So much better than 5:45...hopefully this will be the new trend not just a teaser.

Future star???

Cole is really into music. He has all the makings of a rocker. Guitar? Check. Drums? Check. Keyboard? check. Vocals? check. Well maybe that one needs some work!

In his debut video singing Twinkle, Twinkle Little Star.