Time to start thinking ......Kindergarten!

From day 1 we knew our kids would go to Academy..no question. It is a perfect fit for our family. With that being said..Academy isn't set up like a public school and they don't have the funding like public schools either especially when it comes to special needs. Until this year..for some reason..I didn't label Avery as special needs. I didn't label her at all..she was just in the leap program and that said enough. Well..this year she was mainstreamed so to speak. She is in young 5's with "normal kids" with the most amazing teacher in the world. This has made me fall in love with her current school so the decision to send her to another school next year is a difficult one. We met with Academy a few weeks ago to make sure they could meet Avery's needs. It was a lengthy meeting with us talking about her disability and her needs and introducing them to the Pompe world. I think they were all shocked a little with what she needs and what she goes through but none the less....Academy is ready for Avery. They need to do a few things to get ready for her: build a wheelchair ramp, hire a physical therapist and a few other things. I wasn't sure they would take this task on but they are willing to. We are going to Kindergarten at Academy...ALL IN! Wade and I both agree if this isn't the perfect fit for Avery we will reconsider our options for 1st grade. We hope to have the support of everyone around us..including the staff at her current school. Kindergarten round up is April 20, 2015!

Spirit week 2015

Spirit week at school ....and she was totally into it!

crazy sock day

crazy hair day

mismatched day

professional day...what do you want to be when you grow up? Avery wants to be a doctor of course

Mya turns 7

Mya's birthday this year was celebrated at Soaring Eagle Water Park. They loved it. It was a lot of work for Avery and by day 2 she couldn't walk...literally. She was in pain and exhausted. We had to hold her when the big waterfall happened so she wouldn't get knocked over by the water. She was a trooper though and wants to go there for her next birthday.

Children's museum

We thought the Flint Children's Museum would be fun to do while Marlow and Knox were here! Avery loves it too! We had lunch at Sagebrush after

Christmas 2014

Christmas...Christmas..Christmas! So fun but so exhausting for Avery. It a lot of "on the go" activity which makes for a tired kiddo. Last year at Christmas she got sick from exhaustion and again this summer after Michigan's Adventure. We try to do what we can to make the running minimal but it is difficult especially when family is here from out of town. We also have a less than ideal house for entertaining so we really can't have everyone here either.
We are so fortunate to have all the family and friends that we do and that love to celebrate with us! My kids are ridiculously spoiled and I love every second of it! Christmas is still so magical at our house and with our Elf Gus..it makes it even better. This year Wade's sister Anne and her family came to MI for the holidays...we were lucky to have them here! And of course at my mom and dads it is complete chaos and I love it!

Gus with Mickey ears

Gus built a book castle

breakfast with Gus

Avery the red nosed reindeer

Christmas Eve G and G Nagelkirk's

Cookie decorating with Anne, Jason, Marlow and Knox

Gift time

Trying on Marlow's clothes

Santa came

Christmas morning 2014

Rose her doll, she has Pompe

Christmas Day and G and G Meyer's

Gift time and G and G Meyer's

Painting with Marlow and Knox

Anne and Knox

Jason and Marlow

Miss A doing art

INFUSION 100!!! 3-12-15

A day to celebrate! 100 infusions! WOW! That means over 100 pokes, hundreds of hours hooked up with an IV, so many tears, hours and hours on the road traveling to her first infusions and so much more. AND all I can think about is how thankful we are that we have had 100 infusions! Without this amazing drug Avery would not be with us. This road has been a nightmare to say the least but I do not hesitate when I say I would do every second over again just for our perfect little girl. I'm hoping the infusions are starting to get easier for Avery as she understands more. This time there were less tears and fighting. Grandma and Grandpa came to visit and brought some goodies to celebrate!

same picture every week....sleeping beauty

all her goodies including her clothes:)

Mya and Avery...excited for 100!!

Infusion 92, 11-18-14, Infusion 93, 12-5-14, Infusion 94, 12-17-14, Infusion 95, 12-30-14, Infusion 96, 1-12-15, Infusion 97, 1-30-15, Infusion 98, 2-9-15, Infusion 99, 2-25-15

92 was a normal infusion but was going to be Chelsea's last one:( OMG! Time has just flown by and we are on to new adventures with a new nurse. Chelsea is becoming a nurse practitioner and will be having a baby in May 2015. She introduced us to one of her friends, Cortney and she will be taking over. Infusion 93 Chelsea came part of the time to show Cortney the "ropes." Infusion 94 and 95 were pretty uneventful and we were just getting to know Miss Cortney. Infusion 96 the headaches started. At first we didn't know it was a reaction to her meds but they continued. Infusion 97, another headache..this time with vomiting. Now we were really starting to worry but thought...well..maybe it's a coincidence? Infusion 98 another headache and a call to genetics because this was positively a reaction. Talked to Dr. Stockton and there is a protocol to follow when this happens, a long list of things to try and do. We wanted to start simple, obviously to keep things as normal as possible for everyone involved. We decided to start by just giving her Ibuprofen 30 minutes into the infusion and increasing the amount of Benadryl we give her(we give Benadryl and Tylenol before every infusion, always have)and THIS WORKED! No headache! Phew!!! Avery has been starting to fight the infusions a little more, more crying, more resisting, more questions and the list goes on. We think it is a combination of things starting with her age, her school friends asking questions, a new nurse etc. So we are going infusion by infusion and doing our best to make her understand.

Chelsea's last day. She gave Avery a beautiful necklace! She is one AMAZING person!

during infuion

bribing her with Doritos..no shame!

after one of her headaches

she was dreading her infusion, she has numbing cream on here

Miss Cortney playing with Avery. We were blessed with Cortney as well!

infusion 99...checking her heart:)