Avery and Riley

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??

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....

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!

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

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!

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

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.