Right around the corner...

Her birthday is right around the corner! October 8th she will be 4..WHAT!>>!>!>!?I get tears in my eyes just thinking about it! We are so lucky to have medicine that keeps her going. Who knows if this medicine didn't exist..maybe she wouldn't either. :( I believe in miracles! I just can't stop thinking about how far she has come! At her second birthday she couldn't walk and now she is so active and running! She does most things a "normal" kid would do. I just didn't know and still don't know and that is why we will celebrate the big 4! along with every other birthday that comes our way! Can't wait!

Therapy days at school

This year the school has so many half days etc so Avery class since they are in the afternoon will have to make up a lot of time...so they are doing therapy days. We went to our first one today and we had a really great time! First of all, I love her teachers and school therapists so how could we not! We had circle time, and obstacle course, bike riding, snack and ribbon twirling! Here are a couple videos. I can't stop thinking of Avery 4th birthday coming up..and at her 2nd birthday she didn't even walk...This is unbelievable to me! Medicine, determination and working our butts off got her here:

Avery did great and followed directions like a champ!

Summer Therapy

Therapy at Kids in Motion this year was great! Avery just excelled! She changed so much and got so much stronger! Her speech is fantastic. Alisha her speech therapist at KIM tested her expressive language at the end of the summer and Avery scored above average at 4 years 1 month..huge progress from the beginning of the summer. Avery also improved her speech comprehension to 5 years 6 months. YUP, you read that right she understands EVERYTHING we tell her and has pulled the wool over our eyes for months if not years! I treat her like a baby and I MUST stop. It is only hurting her. Things changed after I got that news ;) SO, SO proud of my little widget! She also did great with her PT..Mary showed me the last day that she could completely jump off the ground! WHAT?! Amazing. Both feet at the same time up off the ground...not super high but I'm still proud. OT went terrific too. She learned to take a shirt off, which is huge! She was cutting in record time for her and also making beaded bracelets in record time! Everyone notices a difference! Way to go!

Avery with putty slippers. Getting those muscles strong!

My sissy

It has been a huge adjustment for all of us with Mya going to Kindergarten this year! We miss her so much during the day. Avery misses her the most I think :) That is her playmate, her best buddy and they play great together..MOST of the time. Mya says she doesn't miss us while she is at school..but we all know the truth..how could you not miss us? LOL This is an assignment Mya had at school. They read a book called "Have you filled a bucket today?" I was SO proud of her that she did this all on her own without having to be prompted!

best friends!

A horse is a horse....

We went to Chelsea's bridal shower in Mt. Pleasant and had a great time! Avery was such a good girl. While there she got to ride on Chelsea's Moms horse! She loved it!

ouch

Back to school means more hours wearing her braces. WELL, we were bad parents and didn't make her wear them as much as we should have over the summer so she wasn't used to them. She got blisters the first week back. So we had to do an emergency run to Livonia to get them adjusted by Edgar(who came in on his day off to do so!

Avery icing her ouchies :(

Back to school

Avery started back to school Sept 4th with a tour of the school and a meet and greet and her actual first day was the 5th. She is in the LEAP program(program for special needs) and goes in the afternoon 12:25 to 3:35 and gets to ride the bus again. She also has the same teacher and para from last year..and I was excited because I love Mrs. Weimer and Mrs. Keener! I was however really worried about the afternoon class because of her nap. I have a feeling this girl will nap for a long time..but...we are only squeezing them in when we can right now. I kept her in the afternoon class because her besties are in that class. All she talks about is her friends and how much she missed them over the summer. I would never want to take that away from her. SO FAR SO GOOD with the afternoon class. She is a little more grumpy than I would like but I'm hoping she will get more used to the hours and everything will even out!

Her first day as beautiful as can be :)

Avery, Makenzie, and Angie..best buds! 

Infusion 58, 8-1--13, Infusion 59, 8-14-13, Infusion 60 8-29-13 and Infusion 61, 9-11-13

Infusions, INFUSIONS and more infusions! It seems we would get used to this...but we don't. It still stresses me out and I still hate that she has this disease and that this is our only option BUT we do it because we have to just like every other person who has Pompe Disease. AND it is always better than the other option...SO thankful that Avery is in our lives and there is a drug that will save her life! All of her infusions have been smooth sailing except the last one on 9-11..it was a little rough. On 9-11 she had to get two pokes and there were lots of tears:( and for some reason it even hurt her when we took the tape off at the end. Let me just tell you this girl is so tough! I am so proud of her. We are also thankful for Chelsea! our amazing nurse!