Avery Catherine Akins

Avery and Riley

2011-03-16T20:40:00.004-05:00

I don't recall exactly how Erin and I became friends on this Rett journey but I'm so glad we did. Avery and I are fortunate enough to see Erin and Riley (and the rest of the Bleske bunch) every spring when they come and vacation at the beach. Today was one of those lucky days. We met them for lunch at lulu's. The weather, food and friends were just what I needed!
I have to admit though, this time made me kind of sad. Avery was such a strong walker the first year we visited with them. Last year was slightly worse but she could still walk. This year no walking at all. I'm hoping (and praying) that she can regain some of the walking skills but she has SO far to go to be back at that point. Her poor calves are almost non existent. The muscle loss from surgery and casting has really taken its toll on her.

Here are pics from the all 3 years!

20092010

2011

angels among us??

2010-12-23T07:54:00.002-06:00

There are very few times in my life that I have been speechless....anyone who knows me can vouch for that! The Christmas miracle that happened Tuesday night in the Atlanta airport was definitely one of those times.

I had just sat down to have a quick bite to eat when a fellow passenger from my San Antonio flight asked if he could join me. (Full disclosure here---I thought he was trying to hit on me! quickly learned you shouldn't judge a book by its cover!)

We exchanged the standard "where ya headed?" and "what do you do?"'s and some where along the way I brought up Avery and Rett Syndrome. I gave him an awareness card and talked about the research. I manged to throw in Girlpower2cure and the fund-raising for research they were doing.

He gave me a business card and told me that he and his wife would love to have me and the kids for a getaway and said to shoot him an email and remind him of the conversation we had just had and we said our goodbyes.

I was sitting at my gate when I saw him walk by twice. He came and sat down next to me and pulled something out and started writing. He asked again about girlpower and then handed me a fold check. He explained it wasn't much but he hoped it would help find a cure for avery. He said God bless and Merry Christmas and he was gone. As soon as he walked away I opened the check. What did I find but a $500!!! dollar donation!

Angels walk among us everywhere! I am so glad I shared about Avery and Rett Syndrome.

If you read this John I., thank you, thank you, thank you! Your kind gesture will not go unnoticed.

MERRY CHRISTMAS!!!

starting today....

2010-11-15T13:40:00.007-06:00

Ok. I have to admit I am such a slacker! I can't believe it has been over 3 months since I posted last. So starting today Im going to start blogging again on a regular basis. I don't know why I stopped....it really is cathartic.

There is so much that has been going on where do I start! (sorry about the fuzzy pictures---off my phone!)

About a month ago Avery started OT and PT at our local hospital. Avery is working SO hard at therapy. We are seeing some new things that give me hope that Avery could regain some strength in her arms! This is her OT, Jessica. She. Is. Amazing! Not only does she know her stuff in therapy but she lives it every day. Her daughter has Cerebral Palsy. So blessed to have her walk into our lives!

One of the things that we are working on is weight bearing exercises for her arms. Well it must be working because this is how I found Aves asleep a few weeks ago. Sometime in August, Avery lost her ability to walk or stand without support. Its seemed like overnight her foot went from bad to REALLY bad. 2 weeks ago Avery got Botox in her calf to loosen the muscle so we could stretch her foot out through a process called serial casting. The theory is that over the next weeks to a month her calf and heel cord will be relaxed and stretched so she can get new orthotics. The ultimate goal is for Avery to get back one of the few things in life that she really enjoyed--walking. This picture was taken the day she got her cast on. It was the first time she has stood by herself in almost 6 weeks.We also had our Natural History study appointment with Dr. Percy. They are super excited about her weight gain and overall health.
And just a super sweet picture I snapped the other day of a VERY rare smile! I know Avery is a happy girl but boy are smiles hard to get!

Catch up time!

2010-07-26T09:37:00.004-05:00

Here is a recap since my last post..... Avery had surgery June 16th. What was supposed to be an 8 day stay turned into a 12 day stay....between seizures and her tummy adjusting to tube feeds we were forced to stay longer. Seizures have continued to plague here since she got out of the hospital. She is now maxed out on 2 different medicines to control them. Hopefully this combination will do the trick! Now for some good news.... Avery has gained almost 3 pounds since surgery. Her little arms actually have some meat :) She is doing really well and seems to love the feeding tube. When she is hungry now she looks at her pump. Mommy is loving the fact that I can give all medicines through her tube! No more fighting :) We are winding down the summer. School starts back August 16th! I know Avery will be glad to go back and see her friends and teachers.She was SOOO happy to be getting out of the hospital!She sat still and let mommy braid her hair....she looks so grown up!
This was taken this past weekend. Her incision and button are doing great!

Birthday party

2010-06-13T10:49:00.003-05:00

We had Avery's birthday party a little late this year---but better late than never! She loved all the Elmo stuff---and my smart little girl even tried to blow out her candle!

Happy 4th Birthday!

2010-05-30T20:33:00.004-05:00

Avery is 4 years old today. Seems like just yesterday I heard her first cry! God could not have given me a sweeter more perfect daughter! Avery, thank you for bringing so much joy into my life. You really are an angel on earth!

Wednesday, May 31, 2006 * 6lbs 8oz 20 1/4 inAvery's 1st birthday---lovin' that cake!

Avery's second birthday. Rett Syndrome regression was just starting.

Avery's 3rd birthday

Rett Clinic

2010-05-06T20:22:00.004-05:00

Today was Avery's 6 month check up with Dr. Percy. Everything is great. She has lost some weight and gotten taller since our last appointment so they are all very happy that we have opted for the feeding tube. On a bright note, her head is finally growing again! Almost 2 years with little to no growth and now she is finally growing some.

Avery's Pancake Breakfast!

2010-04-28T11:13:00.004-05:00

Please come and join us for breakfast with Avery Akins. This breakfast is to raise money for her special needs trust which will help pay for the things that insurance won't. So come out and meet Avery and enjoy some pancakes!! Tickets are $7.00 and can be purchased at the door.

If you are unable to attend but would still like to make a donation, please send checks to:
Foley Lodge #766
404 N Cypress St.
Foley, AL 36535

make checks payable to Foley Lodge 766. Please make sure to put Avery's special needs trust on the check.

HERE IS A LIST OF THE ITEMS TO BE AUCTIONED OFF: EST. VALUE:

--Family 4 pass to the Gulf Coast Zoo X2
--Sailboat Day Trip for 10 on the Cyrus E. King $500

--Weekend Getaway in 6 bedroom house Gulf front
(NO Major Event Weekends) $600

--Kayak Rental for 2

--Waterville 4 pass $120

--Fun Night Bowling/Putt Putt

--Dolphin Dinner Cruise X2

--Hangout Beach Music Festival 2 Tickets $300

--2 Rounds of Golf @ The Wharf $200

--Bellengrath Gardens 4 Pass

--Dinner for 2 @ Original Oyster House

-- 6 hour fishing trip for 1 with Captain Ben Fairey $135

Rett Syndrome sucks!

2010-04-22T10:58:00.002-05:00

Avery has been so stable for so long that I started to allow myself to believe that regression was over. Well it wasn't. Her walking has gotten increasingly worse. She's stiff, rigid and unstable. I begged her neurologist to try medicine to see if it would help. No such luck, in fact it gave her horrible stomach pains. So back to square one.

At the moment, Avery is on 4 medicines daily. Some twice a day. On top of that she is underweight and with every centimeter taller is falling that much more off the growth curve. We have come to the point in this horrible Rett journey that a decision had to be made to give Avery every opportunity to be the best Avery she could be. So on June 16 she will be going into the hospital to have a feeding tube placed. They will also be doing a procedure that will help with reflux. The part that has me the most upset is that because we found out that her stomach empties very slowly she will need an additional part to her surgery. This additional step will require her to stay in the hospital 7 days (at the minimum) and only IV fluids and dextrose for 5 of the those days. I know that in the long run this is going to be an awesome thing for her but no mother ever wants to see her child suffer.

Happy Easter!

2010-04-04T19:57:00.003-05:00

Hope everyone had a great Easter!

Avery and Riley

2010-04-04T19:35:00.004-05:00

This post is a bit late but better late than never! Riley Bleske and her family came to the beach for spring break so the girls got to see each other. It always amazes me just how much Avery and Riley look alike.

April is around the corner....

2010-02-17T06:16:00.002-06:00

....and that means 2 things---Autism Awareness month and Dress Up 2 Cure! With all that is going on in my personal life, I didn't think I could extend myself and try and do a team BUT anyone who feels like giving should support Rett Syndrome research and Team Brooklyn! I'm sure anyone who has visited this blog in the past knows how very special that little girl and her mom are to me.
I know times are tough but every penny, every dollar adds up........it adds up to fund research that might one day CURE Rett Syndrome and give us our daughters back. That is something that I can't even begin to put a price on! I ask you, can you give up your morning latte, maybe pass on that late night pizza, skip a movie rental one week???? I challenge you to toss that change/cash in a jar and at the end of April put it towards a cause near and dear to all of us......Rett Syndrome research and our CURE!!!

Trains..

2010-02-14T17:41:00.005-06:00

Dress up time.

2010-02-12T16:57:00.003-06:00

Avery's cousin, Julia, came to play today. Julia loves playing dress-up and wanted Avery to play too. Then Cole got involved and was the King and was dancing with Julia...pure innocence.

MOM

2010-02-10T20:25:00.004-06:00

music to a moms ears!

catch up photos..

2010-01-23T08:22:00.004-06:00

Sorry so long without a post. Here are some catch up photos, Christmas to now.

(Avery at school)

(Avery in her dress her Mama G made for X-mas)(Cole and some of his presents)
(Cole pushing Avery in her princess car)

Sleeping beauty????

2009-12-16T14:46:00.002-06:00

Look at the rats nest of hair! :)

Little pink riding hood

2009-12-12T10:08:00.001-06:00

Little model

2009-11-15T13:31:00.001-06:00

pure love!

2009-11-15T13:24:00.005-06:00

Avery has and always will be completely smitten with her daddy! She couldn't be anymore in love :)

Recycle

2009-10-10T09:55:00.004-05:00

When Avery was a baby, her Mama G made her this adorable outfit to wear for Auburn games. She quickly outgrew it, but it was tucked away. Last weekend I was looking for something for her to wear to watch the game and came across the top that used to be a dress. It still fits perfectly but now as a top! :)

Rett Syndrome Awareness Month

2009-10-01T08:50:00.003-05:00

October is Rett Syndrome Awareness Month! On Feb. 2007 Rett Syndrome was REVERSED in a genetic mouse model. Our girls wait in silence. Support Rett Research - you can be part of this miracle! http://www.girlpower2cure.org/avery

avery Cat

2009-09-29T09:05:00.003-05:00

Avery gave new meaning to the name "Avery Cat" today. This is how I found her this morning, all curled up like a cat in her chair!

Proclamation

2009-09-24T20:29:00.003-05:00

Tomorrow, Avery, Thad and I will be traveling to Montgomery to witness Governor Riley sign a proclamation deeming October Rett Syndrome Awareness. We are honored to have been invited and even happier that we will also be on the Montgomery local news tomorrow morning at 11:00 central time. If you would like to watch the live feed you can see it at: http://www.wsfa.com/

Pictures to follow!

superfriends

2009-09-17T18:55:00.005-05:00

Lately we have tried to stress to Cole that Avery is special and he needs to protect and help her. Tonight while in character (like he is most nights!), he decided that Avery needed to be "supergirl". I think she had fun strutting the house in his P.J's!

meet the newest conehead!

2009-08-31T17:29:00.003-05:00

We went today and got hooked up for a 24 hour ambulatory EEG with video. She has had some "spells" that I am assuming are from her holding her breath but better safe than sorry! We have had to re wrap her head 3 times---she keeps bumping her head and knocking the gauze off! Stinker :)

First day of preschool!

2009-08-10T10:40:00.006-05:00

Its official---Avery is now a big girl! All the worrying and fretting for nothing. I got her out of her wheelchair and she was immediately befriend by a sweet little girl that was hugging her and rubbing her back :) She was smiling and didn't seem the least bit anxious. I will post later with an update when she gets home from school!

(Before School)

Typical Avery, fell asleep before we were even out of the neighborhood!

*****UPDATED PICS*****

Attempt #1 on computer

2009-07-14T14:52:00.004-05:00

The stand for Avery's computer FINALLY came yesterday. We set it up and had her calibrate her eyes this morning. I started with a very simple task...choosing which food item. I pressed the "I want" button a couple of times and she caught on immediately. She was pretty consistent with saying "I want" before making a choice. She got tired of it quickly but Rome wasn't built in a day and we will keep working!

************For the record, Avery was getting whatever she asked for it is just outside the view of the camera! I was not torturing her!

Tooth Fairy visit

2009-07-05T10:16:00.003-05:00

Cole lost ANOTHER tooth this weekend. He is looking quite funny with his toothless grin! :)

Vacation

2009-07-05T10:09:00.002-05:00

We are home from a long weekend at the beach. Cole spent the whole time in the pool---he doesn't like the sand. Avery has decided that the pool isn't so bad. We would keep her inside until the pool was shaded and she loved it.

A nice woman let Avery borrow her float. It was perfect because she was in the pool but wasn't contained in a baby float. As soon as I got home I got on the internet and found one to buy.

Smitten

2009-07-02T09:22:00.002-05:00

Can you tell who has their daddy completely wrapped around her finger!?!?

Snaggle tooth

2009-06-29T09:58:00.003-05:00

Cole lost a tooth a couple of weeks ago and I'm just now posting a picture. Isn't he cute?!?!?

Family fun...

2009-06-29T09:35:00.005-05:00

We spent yesterday afternoon at my aunt and uncles. It was wild :) The triplets are all over the place and it tends to overwhelm Avery but she was a trooper and seemed to enjoy herself.Julia is 5 months younger but seems so much BIGGER!

Joel(1 of the triplets)

Updates....

2009-06-26T09:32:00.002-05:00

I just wanted to let those of you who follow this blog that everything is OK. Sorry it has been so long since I posted. I have been in a personal funk and haven't had the desire to post. Hopefully things will be better soon---

I promise to update later with pictures! :)

On a happy note, plan on seeing lots of video of Avery-doodle soon---her Dynavox EyeMax will be here today!!!!!!!!!!!

Catch up time!

2009-05-20T07:47:00.010-05:00

Sorry to all my followers for going so long without a post. Life got in the way :)

The month in review:

My sweet baby boy turned 6 on May 4th...Thad's best friend and Cole's name sake, Trevor (Cole), bought him a little cake to celebrate his special day---he was very gracious but told me later that he really wanted a "super hero cake", I guess he thought that was his party! Sweet monkey!
We had his really party that weekend and he had a blast!
Kelly and Brooklyn came for a visit. It was so nice to spend time with them again---if only they lived closer. Kelly and I seem to always pickup where we left off like we see each other all the time. I'm hoping they will come visit again and this time bring Charlie!Last week we took a short trip to Birmingham to see Dr. Percy and Jane. I love going there...its nice for someone to tell you that you are doing all the right things. Avery has grown an inch but lost a pound. They didn't seem to concerned but it is something we will have to keep an eye on.

Bittersweet

2009-04-22T07:42:00.002-05:00

The time has come and it leaves me feeling quite sad. Avery is aging out of Early Intervention next month. These women have come into our home on a weekly basis for more than the past year and a half. One in particular, Ms. Jessica, was Cole's DT when he was in EI so I am going to miss her a ton. They all promise to keep track of us and check in every now and then but it just wont be the same. They have all become a part of the family and they will all be missed dearly. Thanks ladies for loving my daughter and helping to push her to achieve even the smallest of goals.

Alisa, OT

Swingin'

2009-04-22T07:38:00.002-05:00

The weather has been awesome here----warm but not hot, sunny and breezy! We spent the afternoon on Saturday outside. Avery loved to swing, and was the most content she has been in quite awhile!

Bug Musical

2009-04-06T11:32:00.003-05:00

Cole's K class put on a bug play set to music from throughout the years. Cole was a lovebug and they sang a song to "Soul Man" from Blues Brothers. They did a great job!

Day out with Thomas

2009-04-06T11:24:00.003-05:00

My parents took Cole to see Thomas the train this weekend. He had a blast! He has been completely obsessed with Thomas since before he was 2 (as are a lot of autistic boys! ). He rode 2 trains, got a tattoo, say Sir Topham Hatt and played for hours. He was so excited---he calls it "A day without Thomas" :)

daddy love

2009-03-27T18:35:00.000-05:00

tubby-time

2009-03-27T18:26:00.006-05:00

Avery has lost 2.5 pounds and is starting to look really thin to me...Im trying not to worry but as a mom it is really hard not to.

Avery holding her breath---I think she looks preggers!

Sydney

2009-03-23T14:01:00.004-05:00

Today Avery, Gigi and I had lunch with ANOTHER Rett family! Marla, Sydney and Marla's mom came to the Gulf for a long weekend and we were able to get together. Sydney is just as pretty in person as she was in her pictures! Her eyes are mesmerizing :) We realized that Avery and Sydney both have the same mutation---although once again I was shocked at how different the girls are. Sydney has great hand function and seemed very aware of everything around her. She is tiny for her age but is just completely precious. When I asked it if was OK if I took her picture she closed her eyes and gave me a look like "Ugh, I guess, if you must!" it was priceless! :)

Aunt rachael's

2009-03-19T19:06:00.002-05:00

After visiting Riley, we went to Aunt Rachael's. Madison and Caroline were happy to see us! I think Madison thinks of Avery has her baby! :)

Riley

2009-03-19T17:10:00.006-05:00

Riley and her family are in town for vacation and Avery and I went to see them! It is always interesting to see the similarities and differences in other Rett girls. I have always thought that Avery and Riley are very similar looking---I think they could be sisters :)

Diva Avery

2009-03-17T14:27:00.004-05:00

Today was too pretty not to do therapy outside. Princess Diva was blissfully enjoying her facial and mani! Well it was actually oral motor therapy and sensory therapy with fake snow(which is the coolest thing ever!). It was so sunny that Ms. Alisa gave her these rockin' sunglasses to use!

Super friends!

2009-03-11T10:09:00.004-05:00

Cole has become somewhat obsessed with Superman and all things related to "superheros" lately. The other morning he found another cape and put it on Avery and was trying to get her to be a superhero with him. Unfortunately for him, Avery only has eyes for Elmo!

2009-02-22T13:58:00.005-06:00

Dear Friends and Family,

Many of you have always asked what you can do to help with our daughter who is suffering from Rett Syndrome. I need you to consider coming up with a way to participate with us in Dress Up 2 Cure for Team Avery.

Can you organize a block garage sale and donate part of the proceeds?
Can you hold a dinner at church?
Can we raffle off your services?
Can your business hold a Casual/Dress Down Day?
Can you send an email?
Can you post something on your blog? (widgets available ---->)
Can your daughter's girl scout troop get invovled?

We are confident that research funding is the only thing standing between Avery and treatment. We really need your help and would be honored to have you on our team this year. Check out our team page at http://www.dressup2cure.org/teamavery. Then click, "JOIN TEAM AVERY" to get the ball rolling.

Thank you!
Carrie, Thad, Cole and Avery

Dynavox Eyemax

2009-02-17T16:44:00.004-06:00

Today a rep from Dynavox came and did an evaluation on Avery with their new eye gaze system called Eyemax. Avery did so awesome! She quickly made the connection between where she was looking and the things that were happening on the screen. She was proud of herself!

We are going to start the process of getting one for Avery!(in pink of course!!!) I can only imagine the possibilities that having a concrete form of communicating will have on her and living day to day.

Two-steppin'

2009-02-10T19:56:00.002-06:00

(First, sorry it is sideways! I cant figure out how to fix it!)

Avery feels so good since we got her seizures under control and she recovered from surgery. Here she is "dancing" to Elmo. Such a happy baby!

Bling!

2009-01-26T14:03:00.002-06:00

So I came across "Bling Converse" on a website and fell in love with them! But with price tags ranging from $75-120, I wasn't about to buy them. I learned that you could buy Swarovski crystals from Michael's and Avery already had pink high-top converse so this is what I came up with! I have many other designs planned---I think this will be Avery's signature!

Fingernail

2009-01-23T08:23:00.002-06:00

Avery's fingernail came off! Don't know if it is because it is always wet or what. She had no trauma, no bleeding, no pain. Just came off!

New big girl bedroom

2009-01-23T08:14:00.004-06:00

We are still not finished with Avery's room but its a start. We still need to get 2 duvet covers for the beds. My friend, Rachael, is painting some frames and is going to paint a mural of a fairy at some point in time.

Thanks Ms. Beth!

2009-01-11T19:49:00.000-06:00

Thad's coworker, Beth, made this awesome blanket for Avery. It is so soft and just the right size. She uses it every morning while watching t.v.

Thanks again! XOXO

Big girl Bed!

2009-01-11T14:55:00.000-06:00

Avery's first nap in her big girl bed!

tuckered out

2009-01-03T18:00:00.003-06:00

This is how I found Avery the other morning. She had been quiet for a few minutes and I looked over to find her sounds asleep!

best kisses!

2009-01-03T17:55:00.001-06:00

Avery loves her daddy. He is probably the only person who can get good Avery sugar!

Avery vs. tile floor....

2008-12-28T18:41:00.002-06:00

We spent the afternoon in the ER. Avery had a spell and fell out of a chair at a restaurant onto the tile floor and didn't attempt to catch herself at all. The blood was every where! Poor baby. No stitches, nothing to stitch. But while we were there I had them check on her ears and sure enough she has an infection SO a shot of antibiotic and a script for more and we are home recouping. She looks so pathetic!

Christmas pictures....

2008-12-28T18:30:00.003-06:00

I am a little late on posting pictures. It has been a LONG week!

Avery checking out Elmo Live! She still doesn't know what to think!Cole's big present from Santa---Thomas Action Canyon
My niece, Bridget and Avery

The only picture of Avery in her Christmas outfit! She was so sick and miserable!

Merry Christmas!

2008-12-25T07:48:00.002-06:00

Well all is not well in the Akins' house! Cole has a fever, double ear infection and a sinus infection. Avery has a fever and a really bad cough. I should have taken her to the doctor yesterday too but at the time she wasn't running a fever! It is almost 8 am and Cole is still asleep. He is unaware that Santa has been here! We are going to my parents later this morning to open present and have breakfast. I hope that Cole can rally enough to enjoy his presents!

daddy love

2008-12-18T07:53:00.000-06:00

a difference in a year

2008-12-18T07:35:00.002-06:00

I was looking back at old pictures this morning. This picture was taken exactly 1 year ago. She has lost so much function in a year. She has NO hand function left. Makes me so sad!

Neuro update

2008-12-17T19:00:00.002-06:00

Yesterday both kids had neuro appointments. Cole's was a 6 month check up. Every thing is great! He is exceeding every ones hopes and dreams! He is 48 pounds and just a half an inch shy of 4 feet tall! Dr. Dave said patients like Cole are why is went into medicine!

Avery on the other hand...We decided to put her on a low dose of Zoloft. She seems to have anxiety which may or may not be making her hyperventilate more. She is having drop episodes not seizure related---oxygen related. She is hyperventilating so much that her brain isn't getting enough oxygen so she kind of passes out. We are going to have to start putting her helmet on if we cant get her breathing slowed down. She had 2 episodes while in with the doctor. One time she fell so hard that she got a huge goose egg right at the top of her forehead.

We also have to get some blood work done to check her tegratol level and general blood levels. We are also taking her for an EKG, it is something that I have known she needed but put off for some reason. Some rett girls have whats called long Q-T syndrome that can cause a fatal arrhythmia.

Cutest reindeer

2008-12-12T15:43:00.003-06:00

No writting needed! Enjoy!

Cole funny!

2008-12-07T14:38:00.002-06:00

So I was helping Cole get dressed and told him to go get some pants off my bed (I was sorting laundry). I didn't pay attention to what he had on for almost an hour when it finally caught my attention. Cole had on grey sweat pant Capris. Cole doesn't own any grey sweat pant Capris. Upon further inspection I find that Cole has on AVERY'S sweatpants! Yes, my 5 year old fit into my 2 year olds pants! He is now refusing to take them off! He is such a weirdo :)

Good times!

2008-12-02T08:53:00.003-06:00

Saturday we had friends over to watch the Iron Bowl (for those who live under a rock OR outside the state of Alabama, it is the biggest college football game of the year!). Despite the outcome not going our way, we had a great time hanging out. I think there is a future romance between Cole and Madison---they took a tubby together!

(Caroline{my god-daughter} and her mommy, Rachael) (Madison, Pat, Thad, Cole, Rachael, Caroline, Avery, Me)

Cole and Madison
What's that under the water???

Turkey happenings

2008-11-29T14:54:00.002-06:00

Thad's brother, Meador and his "new" family came to town for turkey day. We have had a great time hanging out. Cole LOVES his Uncle Meador!

Uncle Meador, Mama G, and Daddy

Mommy, Cole, Debbie and Austin

Cole, Uncle Meador and Austin

Cole and Uncle Meador

Avery's new poncho (its a bit big, Mama G is going to fix it for us!)

Farm pictures(finally!)

2008-11-17T19:01:00.003-06:00

Just got these from Cole's teacher! Thought I would share.

Sweet monkey!

2008-11-12T14:27:00.002-06:00

Floors completed

2008-11-12T14:16:00.002-06:00

Avery is super excited to have her t.v. back! Too say she was stressed about her house being out of whack is an under statement.

Floors

2008-11-10T19:57:00.002-06:00

We are in the process of putting wood floors in the main living areas. I was SO sick of the carpet. With 2 small kids and several others in and out all the time, it never had a fighting chance. The wood is almost done and it looks AWESOME! Avery has enjoyed clomping on it and hearing the noise it makes.

Farm Day

2008-11-10T19:50:00.003-06:00

Cole's school hosted a Farm Day this past Friday. He got to be out of uniform if he dressed like a farmer. Here was our rendition.

PT thursday

2008-11-06T10:41:00.004-06:00

It's Thursday which means PT with Mrs. Cindy! She has a student shadowing her, ironically named Carrie! Mrs. Cindy brought her an Elmo doll---not to enthused though.

Class party

2008-10-31T20:25:00.003-05:00

I went and took a "special snack" to Cole's class today. Parties are no longer permitted...Here is a picture of Cole's girlfriend. She is next in alphabetical order so they spend quite a bit of time together! She is so sweet. I approve! :P

Who lives in a pineapple.....

2008-10-31T20:18:00.003-05:00

....under the sea? SPONGEBOB SQUAREPANTS!

and our sweet lady-bug

Happy Halloween!

2008-10-31T10:08:00.002-05:00

What fearful shapes and shadows beset his path, amidst the dim and ghastly glare of a snowy night! With what wistful look did he eye every trembling ray of light streaming across the waste fields from some distant window! How often was he appalled by some shrub covered with snow, which, like a sheeted specter, beset his very path! How often did he shrink with curdling awe at the sound of his own steps on the frosty crust beneath his feet; and dread to look over his shoulder, lest he should behold some uncouth being tramping close behind him! and how often was he thrown into complete dismay by some rushing blast, howling among the trees, in the idea that it was the Galloping Hessian on one of his nightly scouring! - - - Washington Irving --a quote from "The Legend of Sleep Hollow"

Triple the fun!

2008-10-28T13:08:00.005-05:00

I bought the triplets some halloween onesies. Today was the photo shoot! They are all getting to have quite entertaining personalities!

(Joel, Claire, Collin)

(Joel & Collin) Claire

Joel

Collin

feeding clinic, Rett clinic, measurements, oh my!

2008-10-25T19:40:00.005-05:00

We have had a fun packed few days! On Thursday morning, Avery had an appt. at the feeding clinic through Children's Rehab services. It went well, Avery is perfect! They said that she is doing well and we should keep doing what we are doing and avoid those foods that we know she doesn't tolerate well. The said that a good caloric intake for Avery(because she is never still unless sleeping) was around 1700 calories a day! That is a HUGE amount of food!

After that we picked up Avery's mama G and headed to Birmingham. Avery had her 6 month follow up with Dr. Percy and Nurse Jane. They too commented on how well Avery was doing. She has put on almost 4 pounds in the time since our last appointment! My little chunky monkey! The first thing that Avery did was walk right over to Dr. Percy and wait to be picked up---she loves Dr. P! We will go back in May. I cant believe that in 6 short months Avery will turn 3 and age out of Early Intervention. Time sure flies by!

(Waiting for Dr. P and Jane---they were 15 mins late!)

Avery going over to Dr. PercyAvery and Dr. P

Jane and Avery

Rett's Littlest Angel

2008-10-22T09:30:00.006-05:00

The article about Avery and Rett Syndrome came out today. It has made me cry all morning! Click on the following link for the entire article!
http://tinyurl.com/5mcdbe

cole's new bed

2008-10-21T10:36:00.003-05:00

I had my dad build Cole a loft bed. Just like most little boys, Cole loves forts! The room isn't completely done, but you get the idea!

long time

2008-10-16T07:55:00.002-05:00

I just realized it has been well over a week since my last post! sorry! Not much new to report. Avery seems to be better on her new medicine as far as hyperventilating and anxiety. She is still stumbling quite a bit (proof in the picture below) though.

A reporter from our local paper is coming this afternoon to do an article on Avery-doo! I am so excited---hopefully it will enlighten some people in the community so they will open their hearts and pockets for Rett syndrome research!

Brotherly love

2008-10-06T14:53:00.002-05:00

Some of you might be wondering why I posted this obviously old picture of Cole and Avery. Well this picture might be the last time Cole showed affection for his sister in a loving way---that is until yesterday.
Yesterday afternoon Cole was playing with his trains in the dining room making tracks under the chairs. Avery was sitting next to him. Thad and I sneaked to see what was going on and found Cole "reading" a book to his sister. The next thing we knew he was tickling her and then leaned over and said "love you, Avery"! Completely unprovoked, unscripted, just a brother being sweet to his sister. Thad and I both got a bit choked up---we knew he really liked her!

Rett Syndrome Awareness Month

2008-10-03T09:20:00.003-05:00

Hey ya'll!

It is October; a time for cooler weather, beautiful changing leaves, and more importantly Rett Syndrome Awareness Month! This year, I am trying to make it “Action Month” as well. Since you are “aware” of Rett Syndrome, I am asking you to help me take action.

As you know, our daughter, Avery, suffers greatly from Rett syndrome. This devastating disease has taken away her ability to walk well, talk, and use her hands but it has not taken away her spirit, laughter, and love. She truly is my personal inspiration. In honor of Avery, I am joining the non-profit organization Girl Power 2 Cure to help fund Rett Syndrome research.

FACTS
A few facts about Rett Syndrome to consider:
* It is a debilitating neurological disorder that mainly affects girls
* It is the most severe form of AUTISM
* It is the leading cause of severe impairment in females – most cannot speak, walk, or use their hands
* Is caused by a random gene mutation, every baby girl has an equal chance of acquiring
* Another baby girl is born afflicted every 90 minutes
* It COULD be the first childhood neurological disorder CURED!!
Did I just say CURED?

THE CURE IS CLOSE

Yes!! There is amazing research going on RIGHT NOW that has the potential to give Avery back everything she has lost. We are very hopeful for treatments or a possible cure! Of course this takes continued research and Girl Power 2 Cure, Inc. uses 100% of their proceeds to fund the top Rett Syndrome research labs in the world.

To make a donation in honor of Avery and help change the lives of hundreds of thousands of little girls just like mine, visit our family’s personal page: www.girlpower2cure.org/avery and click the “donate” button.

SPONSOR A DRUG

To really make an impact, also consider sponsoring a drug in honor of Avery. There is a crucial project needing funding which will test all 3,000 pre-approved FDA drugs. There could be help for Avery on the shelf just waiting! One drug costs just $168 to test. Click the link on our family page, or go directly to: www.rsrt.org/news/Sponsor-a-Drug.html to sponsor a drug now.Please share this email with all of YOUR friends and family as well – together we have the POWER to beat Rett Syndrome!

With Sincere Gratitude,
Carrie and Thad

Build a Bear

2008-10-03T07:47:00.003-05:00

Avery got her Girl Power 2 Cure build-a-bear kitty in the mail yesterday! We were one of the first 20 families to sign up for a membership. It is adorable. It is almost as big as she is! :)

Out of the woods!

2008-09-30T09:15:00.003-05:00

Shoo, Avery is better! She is back to normal and all the symptoms that she seemed to be having are back to where they were prior to the increase in the Lamictal. She is still somewhat clumsy and stumbling and hyperventilating but not anything like she was this weekend. She is smiling and over all my happy baby again!
Life is good!

UPDATE: Avery's neurologist called, she is starting Tegretol tomorrow morning. She had several vacant spells today. She had 2 while her P.T. was here. Hopefully this medicine wont send her into a downward spiral again.

This is the life!

2008-09-29T07:07:00.001-05:00

Rub-a-dub-dub

2008-09-28T17:28:00.002-05:00

Its Avery in the tub!

(look how long her hair is getting!)

Sad day

2008-09-25T19:34:00.002-05:00

I am having a HORRIBLE day! I am struggling with figuring out whether or not the little girl in front of me is really her or a mirage. I am praying that the demon who has invaded my baby is just a side effect of the seizure medicine and not a guest who is here to stay. She is completely spastic, hyperventilating, anxious, stressed, clumsy and all around CRAZY!

She is currently sitting in her bumbo, blowing raspberries WHILE hyperventing, watching ELMO. This was a last resort...I'm at a loss, putting her to bed is not going to happen anytime soon--she almost seems possessed...pupils huge, shaking, unable to be held, arching, thrashing....

sweet babies!

2008-09-24T14:35:00.002-05:00

Yesterday marked the first day of watching the triplets! Avery is oblivious to them unless they happen to be crying! She was sitting with me yesterday and Claire was on the floor. I placed Avery down with her and they looked so sweet together! Hopefully Avery will enjoy having the babies around. :)

10 year reunion

2008-09-21T19:56:00.002-05:00

I had my 10 year high school reunion last night. Thad stayed home with the kids(and didn't want to miss the Auburn/LSU game). My best friend left her husband at home too. Time sure does fly!

Me, BFF Charlene, Shannon...we have all been friends since 5th grade!

New pictures

2008-09-21T12:46:00.006-05:00

Sorry its been a while since I posted new pictures. My camera battery died and I couldn't remember to buy a new one!

Thad is a bit behind on the mowing of the grass...Avery seemed to disappear!

I also FINALLY got my hair cut. It had been almost a year! I am such a short hair kinda girl...

weight!

2008-09-16T19:06:00.004-05:00

Whose little girl who was teetering between 24 and 25 lbs hit 28 pounds today??? That would be my chunky monkey! Thank God for Carnation instant breakfast!!!

that would be 16.1 BMI---47th percentile!

UGH!

2008-09-10T06:40:00.002-05:00

Avery started her seizure medicine on Sunday morning. So far it seems to be fine but her behavior has changed some. Last night I put her to bed like I always do. She needs both of her bunny loveys, paci and her blanket. She rolls over towards the wall and closes her eyes. I knew she was tired and thought that this would be it from her until morning. WRONG!!!

About 15 minutes later as I was putting Cole to bed, I hear her yell. I go to open the door and I cant. Something is blocking it. Yep, that something was Avery! She fell out of her crib!! She has never stood up in her crib so I usually leave the side down. Well I guess she stood up and leaned forward and fell right out!

I'm glad I decided to check on her. Normally once she is in bed, even if she yells I don't go and check on her, she sometimes just needs time to unwind. Poor baby was wandering around her pitch black room for who knows how long!

A Cole funny....

2008-09-09T16:48:00.002-05:00

One day he is probably going to kill me for this but it cracked me up!

He was on the computer and got up quickly and ran to the potty. I went into the bathroom to check on him and I see him standing looking into the mirror at his pee-pee. He turned towards me and said, "Mom, it itches! Does it got bugs on it??" It was hilarious.

Boys are quite interesting!

Guestbook

2008-09-09T07:53:00.001-05:00

hey, I added a guestbook at the bottom of the page. Feel free to sign so I know who is stopping by!

WaR eAgLe

2008-09-08T20:25:00.004-05:00

Better late than never, right?

Sad but happy

2008-09-08T18:20:00.004-05:00

Thad's aunt, Vivian, passed away this past Friday after a long fought battle with cancer. The services were held on Sunday and we got to see a ton of people that we haven't seen in ages. It was not the best reason to gather but it was great to see everyone. The thing that I kept hearing over and over again was, "Geri sent me Avery's website, so we check it often to see how everyone is doing. We've been praying for ya'll."

It is a great feeling to know that Avery's struggles have opened so many peoples eyes to Rett Syndrome. Hopefully this blog will continue to raise awareness.

This picture is not related to the post, just posted because she is so stinkin' cute! She loves the bumbo seat and will find a way to sit in even if it means backwards with her legs dangling. She would stay in this position forever!

EM OOO

2008-09-04T14:34:00.002-05:00

Julia climbed onto the couch with Avery this morning and excitedly proclaimed "ELMO!" to which Avery replied, "EMMOOO"!!!!!

Hurricane Gustav

2008-09-01T13:11:00.006-05:00

We decided to venture to Gulf Shores to check out the water. There was minimal damage along the way, mostly downed tree limbs.

The gulf is angry. There are big waves and wind but we got lucky. Here are some pictures from our trip.

Thursday fun

2008-08-28T19:55:00.005-05:00

Thursday can only mean 1 thing---PT with Ms. Cindy! We figured out pretty easily that a distracted Avery is much better for PT so She watched Elmo. She is really pronating in and refusing to use the outside of her foot so we are doing alot work with that. After PT we had a party! Dee and the triplets, Rachael, Madison and Caroline, Gigi and Granny all came for lunch! We had a good time. Poor Joel and Collin were WAY out numbered! Avery was content to sit and snuggle with Granny while the other big girls alternated between going potty and fussing over the babies!

Aquarium

2008-08-26T15:01:00.001-05:00

Kelly and I had a blast at the Georgia Aquarium! We got to pet stingrays, shark(well we tried anyway!), shrimp, and sea anemones. It was great fun!
We were also flashed by a Beluga whale! He came at the window and posed with all his male glory! The moms standing by us all gasped as they covered the eyes of their kids! It was quite funny. Actually this is the second time an animal has done this to me and Kel. We got quite a show by a monkey at the Indy Zoo!
Neither of us bought a camera---I thought that she always has hers and she thought that I would have brought mine. Oh well, this is all we have to show for our trip! Next time we will ask before assuming.