Avery turns 5!

Avery turned 5 and wanted to celebrate at Chuck E. Cheese with an Ariel theme. So as you know by now...she gets almost anything she wants! It was a fantastic birthday celebration with lots of friends and family there to celebrate with us! She is one lucky, spoiled little one!

on our way to C.E.C.

her cake

Avery and her Ariel cake

cupcakes with white chocolate on top

Avery and Chuck

Mom and Avery selfie

playing games

all the friends

ticket blaster with aunt Mandy

Her gift from mommy and daddy

gifts at CEC

Her actual birthday!

her school treat

posing in her bday jammies from Chelsea

playing with her new toys

playing with one of her new toys outside the tub because of the casts

play doh

on her actual birthday Daddy was out of town for work and we went to dinner and got cupcakes

making a wish

sissy eating her cupcake

showing me her cupcake

big girl bed

With both legs being in casts it was hard for Avery to sleep and fit into her toddler bed. It was time for a big girl bed. It didn't happen overnight though so in the meantime she was sleeping on two crib mattresses pushed together on the floor. She now sleeps like a champ and loves her big bed!

first time trying it out

reading and loving her bed!

Botox and then recast

Dr. Dabrowski thought we should try Botox to loosen Avery's leg muscles and then recast to try and get some good movement. The Botox was a nightmare. It was painful for her even though we put numbing cream on every location that she got injections. The needle was SUPER long. She was over my lap with her head down and I could just feel her crying. It made me sick! I cannot handle it when she is in pain. It was super quick and Grandma and mommy took her to Target afterwards and spoiled her rotten. I would like to say that I never want to go through that again but we just found out it will be happening again after the first of the year:( The goal is to get Botox then cast within the next couple day and continue with the serial casting for 4 weeks plus. She got her first set of casts, yes casts on both feet up to her knees on 9-22-14 and got them changed weekly for 4 weeks then went down to only having the right one casted for two more weeks. During this time Edgar recasted her for new AFO braces. LOTS OF RUNNING and lots of stress during this time. The casts can't get wet so baths are difficult and it was really rainy during this time too. The final cast just came off 11-12-14. Back to Dabrowski on 11-13-14 for him to tell us that her right foot is still not where is should be and be will have to do Botox again in January and recast that right foot again. This poor kiddo. It really doesn't phase her much though. She is a trooper and still tries to do everything she can!

her wheels for stability

taking off the first set

Edgar trying on new brace..purple butterflies of course

Cider mill

Fall is my favorite time of the year so this usually means multiple trips to the cider mill. Here are some pics of our first trip this fall.

Mya getting ready to zip line

Avery peeking at me

mom and dad

Wade, Sarah, Mike, Mandy, Mya and Avery

selfie

waiting for our hay ride

sisters

uncle Mike and daddy and aunt Sarah and Mya in the background

First day of school 2014

Young 5's for Miss Avery this year! WOW! Mom was NOT ready for all day school. We were super worried about Avery keeping her strength and being able to last all day and participate in most activities. We were proved completely wrong and she is doing FANTASTIC! The staff at Holly Elem is nothing short of AMAZING! Avery's teacher Mrs. Godin is even more amazing! Words cannot explain the relief I have now...knowing she is in great hands. She uses a wheelchair/stroller throughout the day to save her strength and I think that helps a ton. She knows her limitations pretty well and even sits out in gym class when they do their running activities. She has a BFF, Piper in her class who has helped Avery come out of her shell(maybe because for the longest time there were only two girls in the class)There is a para that comes in and takes Avery's braces off everyday too(which also sets my mind at ease) She LOVES school so much and is learning so much!

waiting for the bus

on the bus :)

Infusions: #86, 8-28-14, #87, 9-10-14, #88, 10-23-14, #89, 10-7-14, #90, 10-21-14, #91, 11-5-14, #92 11-18-14

Writing this on 11-18-14, and I'm so behind on keeping this updated. Infusions have been going pretty smooth lately. We officially were done with the Lumizyme study on Nov. 5. Nothing much changes for us as far as infusions go. They will now get billed to insurance. It is possible we will have to pay a thousand or two for the rest of our deductible but that would be it..and that depends on how it is billed and we really don't have control over that. Avery has been doing half days of school on infusion days and that has been working great for her. She gets to see her friends then take a nap during infusion. We use lots of numbing cream to reduce the pain of starting the IV..but she is a champ! On Nov. 5 we also  got to meet Cortney, the nurse that will be taking over for Chelsea :( in mid December. We are so, so sad to see Chelsea go but completely understand. She is expecting a baby in May and will be finishing school. I wonder if Chelsea should warn Cortney about becoming part of this crazy family ;)

playing during 9-10-14 infusion

her meds are in her backpack

snoozing on 10-7-14

summer fun 2014

day one of hanging with cousins

Lillian's 6th birthday party

fancy tatoo

swimming at Nolan and Gavin's

VBS 2014

Grandma and Granpas

kayaking with sissy

maze with Keaton at Indian Springs

summer dance class

Lake MI, South Haven 4th of July 2014

watching Yogi 4th of July

South Haven Yogi 4th of July

Milford Park

Yogi or bust 4th of July