bone scan

Avery has been limping and dragging her left leg since we got back from Dominican. We have no idea why!? We've seen her Physical Med. Dr. http://www.childrensdmc.org/edwarddabrowski several times, had X-rays done and a bone scan and all tests are negative. Her bone scan was quite an ordeal as she had to be put under anesthesia for it. It was scary for us especially knowing what we know and what we have heard about Pompe, heart conditions and anesthesia. All went well though and she was a champ! It helped me when they told us her results from her last echo(that was 2 weeks earlier) and she had a "normal" heart. Phew! The nurse that was going to be assisting with the bone scan said the IV would be the most difficult part..well I knew that wouldn't be a big deal for A because they had numbing cream. Not even a flinch from her and the nurse couldn't believe it! I was a wreck when I was watching her fall asleep though.... holy smokes that was hard but I knew she was in good hands and the nurses were and always are AMAZING!! We are gonna wait it out a couple more weeks to see how the limping goes. It has improved and is better when she is wearing her braces. We will keep you posted on this!

modeling her gown

keeping her entertained

coming out of anesthesia 

inhaling a blue Popsicle 

finally going home!

6 month check up for drug study

We are supposed to get a check up every 6 month for the Genzyme, Lumizyme study that Avery is a part of. Well, we were a few months behind our normal 6m schedule but we got it done. She gets an Echo cardiogram, and EKG, blood work, has to give a urine sample and gets a full physical therapy evaluation. It is always a smooth process but takes several hours. We were super pleased with her PT eval...she has grown leaps and bounds since her last check up almost 8 months ago. She can do several of the things she couldn't do then! Way to go!

Getting her EKG done..and yes she is always this still! She is amazing!

Taking a break from the therapy

pt eval

tuckered out after a long day of testing

Gus

We love our Elf on the Shelf, Gus! He arrives right after Thanksgiving and leaves Christmas eve. It is the most magical thing ever! The girls cannot get enough and listening to them tell other people about Gus makes it all worth while!

His parachute got stuck in the light

He brought trees to decorate for their rooms

Avery's tree

Mya's tree

Getting into the candy jar

His first night back..spelled their names with froot loops

Hanging from the decoration he made

Making snowmen

Riding the train under the tree

zip lining across the living room

Going to the chapel and "Chelsea" is getting married!

Our fabulous nurse Chelsea got married on December 28, 2013! She was a beautiful bride of course and the reception was magical. Avery thought Chelsea was a princess and loved being able to go to the reception! Avery danced like crazy and was such a good girl!

Chelsea, Avery, Wade and Mommy

Chelsea's cutting cake made by yours truly 

This is how amazing Chelsea and Adam are!

Chelsea and Avery

Christmas 2013

Christmas '13, what an amazing one! Both girls were overly thrilled and couldn't even wait for Santa to arrive! We had an amazing holiday season! Avery took quite a bit longer than Mya to open all her gifts but she did it!!! ALL ON HER OWN! WOOT WOOT!

Our cookies for Santa

Santa!

Avery opening!

Both girls on Christmas morning

Avery and Santa at her school Christmas party

New braces

December 9, 2013...New braces for Avery.
She picked a ladybug/flower all over pattern and this is what we got. I didn't throw a fit because she likes them!

Infusions: #65, Nov. 7 and #66, Nov. 22, 2013, # 67, Dec. 6 and #68, Dec. 23, 2013, #69, Jan. 8, #70, Jan.16, and #71 Jan. 31, 2014

Infusions are going so smooth now that we have the magic cream!  Chelsea has been getting here earlier in the morning and getting started which is nice. This makes it nice for her too because she has a 2 hr drive home.

Nov. 7, 2013 just finished!

Dec. 23, 2013

Our little sleeping beauty. This is perfection my friends! We are so lucky!!!