Diagnosis day 2013

Two years, and look how much Avery has changed. This day two years ago our lives were turned upside down. I remember it like it was yesterday. Around 11am Wade called me with the news and I was devastated....Avery had/has Pompe and there was/is treatment but no cure. We had no idea what to expect and what to do. Now two years later our life is go, go, go and GO! We are so busy all the time. Avery now has infusions every other week at our home. We have an amazing nurse, Chelsea who comes and gives her this amazing, life saving drug. She wears leg braces to help her walk and WALKS! Two years ago she didn't do that. She has school therapy and in the summer does private therapy at Kids in Motion. We go to speech, occupational and physical M-Th.in the summer. She is currently in a drug trial for the drug Lumizyme so that adds extra to our schedule. We have to do blood draws once a month and overnight them to Genzyme(who does the study) and every six months she is evaluated at Detroit Children's Hospital. She gets an echo, and ekg, a full physical therapy exam, blood work and urine work. She is also examined by her genetic doctor, Doctor Stockton. He is a genius and we are thankful for him. 

Everyday I am thankful for medicine, the amazing family and friends we have that support us through this roller coaster life, and all the doctors and nurses that give, give and give. We have gained an amazing circle of "Pompe friends" through this journey and I don't know where I would be without them. I can ask them anything and they have an answer or a shoulder to lean on. My outlook on life has changed DRAMATICALLY! So many things that used to "matter" no longer do. I know now what does matter, and it is keeping Avery strong and healthy and staying close to the ones that support us and help us through. My number one priority is keeping my family happy and healthy. I have learned that it is ok to say no and that I can't always do everything. I am a giver and a do-er and want to give 110% all the time but I sometimes don't have the energy and that is ok. My mind is always on Avery and her well being. I try really hard to keep every thing else in balance especially with Big Sister Mya. I never want her to feel left out or neglected because I give so much to Avery. I'm hoping that Mya will realize with time it is what needs to be done and that I love her just as much. It makes me cry thinking about this :( I know that Pompe has changed our lives and I understand it..I am just not sure that Mya understands that it has changed her life too. I hope she understands one day. I do know that Mya loves Avery more than anything!

new braces

Edgar casting Avery for her new braces!

Avery getting her new braces on. She is getting so big and wanting to do it on her own. I am learning to be patient ..but it is difficult :) She chose purple and butterflies and really likes them!

We call this THERAPY

Avery reaching above her head to get a leaf is considered therapy in my book. Our goal is to get her to reach above her head as much as possible!

Infusion # 50, April 11, 2013,/ #51, April 25, 2013,/ #52, May 8, 2013

Wow, I'm behind. 3 more infusions under our belts...I say that like there is an end in sight..but I  know there is not. :( Hoping every single day there will be. Avery has been doing amazing. Especially on #52, barely any tears and such a big girl. I am mom of the year and let her eat whatever she wants and she chooses junk of course! She has been taking nice long naps during the infusions and it is really nice. I sometimes get a little snooze in too. For whatever reason, infusion days suck the life right out of me. I still can't figure out why. They go really smooth and they are pretty low stress. I guess it is the whole situation..I don't know. When I do figure it out you will be the first to know.