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:)

Disney or bust!! 2014

Thanksgiving 2014 we spent on a plane....to FLORIDA!! YES! It was time for Disney! We had amazing, once in a lifetime time! Grandma and Grandpa Nagelkirk and the 4 of us rented a house about 15 minutes from the park and a huge suburban so we along with the wheelchair would fit. The girls were great and Avery was a trooper. We borrowed Avery's wheelchair from school and took it with us. We tried to plan events for every other day so Avery  could rest. We went to Sea World the day after we arrived.  The next day we went to Downtown Disney. The following day went to Magic Kingdom in the later afternoon so we could stay later and see the fireworks. The next day was a pool day. Then the next morning we went back to Magic Kingdom and the next day we would leave. I probably missed something in there. We have so many great pictures and memories! A very special thank you to G and G Nagelkirk for this amazing time that we will never forget. Here is the link to almost 500 of the pics from our trip...some are duplicates, some are horrible and some are great! https://www.flickr.com/photos/124015053@N03/sets/72157650839517899/