Sick

Poor Avery! She has been battling tummy troubles for over a month. We are waiting on preliminary tests(I had the fun task of sample collecting for 3 days!!!) to see if it is parasites, or an infection or somethings else. She has lost 2 lbs since the end of February. That is 10% of her body weight! On top of that she has a real stomach bug now so everything is going straight through her! I called the nurse (again!) to see if the results were in yet. No word yet. They are also supposed to be getting a referral to the gastro doc for us too. With all the gastro problems that Rett girls have I figured we better get in to see one sooner than later.

Stay tuned for the results...

***UPDATE***
All tests were negative. Back to square 1.

***UPDATE #2****
The gastro is 13 weeks out on appointments! She had a cancellation for June 24th so we took it. Only 6 weeks to wait----

PT/OT

Today Avery had PT and OT together. She loves Ms. Alisa and Ms. Cindy! Ms. Cindy always brings new cool toys. Today she brought a Tigger Bouncy Ball. We are working on core muscle training. She really likes it! She tries to be sneaky and lean against someone but we wont let her!

Crazy Cole!

Thad bought a plastic pool for the kids yesterday. Cole wanted to swim, but he has outgrown his swim trunks from last year. He didn't like any of the options I gave him for shorts so he decided to take his fashion in his own hands! This is what he came up with!

helmet

Avery's helmet came in the mail yesterday. It is SO cute! She fought it at first but eventually forgot she was wearing it. Hopefully it will protect her pretty little head and face!

Toes

I painted Avery's toenails for the first time yesterday. I was painting skin, she has the tiniest toenails I have ever seen! She will be a girly-girl whether she likes it or not!

Handbook

Last night I began to read the "handbook". In the front of the book was a letter from Kathy Hunter, founder of IRSA and mother to angel, Stacie. These words in particular brought me a sense of peace:

"You daughter brings so many blessings. She may never talk, but she will never talk back. She may never run, but she will never run away from home. she may need drugs to sustain life, but she will never take drugs to escape life. She may never use her hands for skills, but she will not use those hands for violence or evil. Look into her eyes and you can't help but have hope. She lives through her eyes. She loves through her eyes.......Her eyes, windows to the soul, take us to cherished places within her heart. Her eyes do more than see you. They touch us. Every human emotion us whispered, sung, shouted by her dancing, sparking eyes."

Thanks!

Yesterday I got a package in the mail from Kelly and Brooklyn. Kelly had sent the "Rett Syndrome Handbook", coloring books for Cole, coloring book and paper and crayons for Avery, and 2 handy-dandy coloring straps(see picture)! We are so incredibly blessed to have them in our lives. Hopefully I can pay it forward to another mom of a Rett angel!

Hugs and kisses to you both!

Siera

I "met" a woman today whose daughter, Siera, has the same deletion as Avery!!

She is 20 years old and gives me such hope for what Avery's future might be like. Her mom said she likes all of the things that typical teenage girls enjoy---she loves music, jewelry, getting dressed up, make-up, men, shopping, the beach, movies.

Thank you Lisa for sharing Siera's story with me!

Noggin protector

Avery's poor head seems to be bruised all the time. She is very unsteady on her feet and has brought blood on several occasions. I realize that she needs freedom, but it breaks my heart to see her in pain. My solution is to get a noggin protector. I came across this helmet this morning. It is called a ThudGuard. I think it is adorable! She is getting the "lovely lilac". I will be sure to post pictures as soon as it arrives!

Update

Well we went to the neurologist for what we thought was a follow up to her EEG. Instead we got the news we weren't full prepared to hear! Avery does in fact have Rett Syndrome. The second genetic test revealed that she has "exon 3 and 4 deletion". For the layman, this means that "chapter" 3 and 4 have been deleted from her MECP2 "book".

Her EEG was abnormal. She is having what Dr. Suhrbier called markers for seizure activity. She isn't have seizures at this time but it is inevitable.

On a happier note, Cole is doing AWESOME! Dr. Suhrbier is amazed every time he sees him. :)

LOVE

I love my Daddy!

Farmer Cole

This week is "FARM" week at school. Cole gets an out of uniform day and dressed like a farmer! Let me tell you, convincing a hard headed, 4 year old with autism that he can wear regular clothes to school is hard work! He knows he wears either white/navy shirt with khaki/navy bottoms to school. Anything else throws him off! Luckily they had been talking about dressing like a farmer all week so it wasn't a huge struggle.

Field trip

Yesterday we went to Madison's house. I love going there, a new place to wander around! Mommy likes going too, another adult to talk too :)