Ballerina Avery

Ballerina Avery

Saturday, December 8, 2018

Make-A-Wish Trip 2018

Make-A-Trip 2018! 
Avery's wish was to go to Universal Studios and to get tucked in by the bunny at Give Kids The World Village.

This is a few details about our trip. Believe me when I say there is no possible way to list ALL of the magical details! It was something that could only be felt at times and I really tried to focus on being in the moment and not be attached to my phone/camera. With that being said between all the park photos(which were included in our MAW package), village photos, Wade and I we have well over 500 pictures! This post will be all over the place and have grammar and spelling errors too! Just look past that and try to feel the magic!

What a magical, amazing, fun, once in a lifetime experience! 
This was a trip that is so difficult to was something that one would have to feel! You can’t explain the feelings you have seeing your family enjoy things that would otherwise be completely out of reach. It was Avery feeling included in everything. Avery feeling comfortable to get up and dance with others in wheelchairs! Sister loving every second of her handicapped sister getting spoiled along with herself!

Day 1 was an early rise with a limo ride to the airport. We flew Delta and they were amazing! They give so much to MAW families and we were treated amazing. They gave us food, drinks, wings, cockpit access and checked on us constantly.

Once we landed in FL we were greeted by a Give Kids the World volunteer. The volunteer was the sweetest person alive and had a bag of water and snacks for us. She filled us in on small details about our trip and took us to get our rental van. It was supplied by National. They instruct to not fill up the van upon return and were also so nice! So if you’ve ever rented a vehicle in Orlando you know there are vans, vans and more vans. Avery got to walk down the aisle of vans and pic the color! She chose white to be like Viv! After the van we were off to the resort!

Give Kids the World Village is the most magical place on earth! I mean that honestly. It is run mostly by volunteers that are genuinely fantastic. We were greeted with “welcome home” at the gate and pointed to check in. Our villa wasn’t quite ready when we got to the village so we went to have some lunch and came back for our orientation. Avery was given a bag with orientation items and a new doll, coloring book, crayons and a few other treats. They NEVER leave out the siblings so Mya got a new stuffed animal too. Orientation was a tad overwhelming with all the info on the village and all of our park options. After we got filled in our villa was ready so they took us there! Villa 104 would be our home for the next week. These villas are amazing. Full kitchen, washer and dryer, master for the kids and an extra bath for us. Its huge with a crib if needed and also a pull out couch. Best's handicapped accessible! Our biggest worry this week would be what are we gonna do? The village has activities and we have any park pass imaginable at our fingertips.

GKTW(Give Kids The World) has pools, a spray park, movie theater, an arcade, small rides, putt putt golf, slushies, ice cream, pizza, a cafeteria that offers some kind of food all day, playgrounds, snacks and treats every where you turn and so much more. Upon our arrival we decided this day would be to explore the village and take in what it had to offer. We went to Mayor Clayton's birthday party, went on the train a few times, explored the castle of miracles(where Avery's star will be forever) checked out the gift shop, got ice cream(which is available all day everyday) got a slushie (which is also available all day everyday), checked out the largest candy land playground ever and played some games in the arcade(air hockey, basketball, skee ball, remote control boats and moms fav...old arcade Pac Man) Awesome day!!

Day 2
GKTW has a breakfast cart that you call and they bring breakfast to your villa. What!? We called the first day and were amazed what could fit on a golf cart for options. They had donuts, English muffins, milk, juice, yogurt, coffee and much more. Neato! After breakfast Wade headed to horseback riding with the girls while I got ready for the day. Again, handicapped accessible horseback riding. They loved it and got cute little cowgirl hats!

Today was a Universal day! We spent the day getting treated like royalty literally escorted to the front of every line for rides, characters and anything else we wanted to do. Universal was Avery's wish so she was super excited! Avery's favorite thing about Universal was the Hulk coaster ride and Mya's favorite was Harry Potter land. Of course our favorite part was watching the joy and amazement on their faces! We stopped on the way home at a little local Mexican restaurant and then headed home to crash!

Day 3
Dad got up with the girls and they headed to breakfast. Everything is cafeteria style which they all LOVED. Tons of sponsors are involved in the food. Perkins restaurants, Boston Market, Jimmy Dean, Krispy Kreme, Coke and Minute Maid, and the list goes on. They also had Disney characters at breakfast which the kids loved. I have to add that every single day there are village fairies that come to your villa and leave things for the kids. All donated from amazing companies. The kids got Disney items. Hasbro games, Universal pins, GKTW items and more! Magical and so sweet.

We were off to Magic Kingdom today! You all know how magical MK is! Well, when you have a blue MAW shirt on its intensified by a thousand! I mean every single character waved at Avery during the parade and she got called a princess hundreds of times! They are serious about the reason you are there and that is evident! Avery's favorite part was Big Thunder Mountain roller coaster and Mya's was meeting her one and only...Stitch!

We followed MK up with a Christmas Party at the village. Santa, toys, meet and greets with characters.The highlight was Avery meeting a real unicorn named Spirit. After the Christmas Party there was a holiday parade followed by a dance party in the street! SOOOO FUN!!

Day 4
Again, Wade took the girls to breakfast while I got ready for the day. We were headed to Animal Kingdom today! I was super excited for this! AK was so cool. We really enjoyed it! Lots of fun rides and shows! We saw Nemo and Lion King shows and they were awesome!  We went on the safari ride and got stuck in a "girraffic jam" which the kids got a complete kick out of!. Micky bought us our snacks that day because of our magical MAW shirts. We all loved the Avatar "ride" which had a 210 minute wait for most riders...but again...we had a short wait! Magical!
We left AK and headed to Giordano's for some pizza and then back to the village for the Mermaid and Pirate party. Wade took Avery to this party because Mya and Mom were toast!
Avery and Dad rushed back because tonight was the Mayor Clatyon(the bunny) tuck in! This was another part of Avery's wish. It was awesome...and there are some video clips of this as well. Avery's favorite part was The Lion King musical live and Mya's favorite part was Expedition Everest a roller coaster.

Day 5
This would be our last park day we we wanted to check out Hollywood Studios and go back to Universal to hit up some rides that we missed on our first visit. HS was AMAZ! This is where Toy Story land is and so many characters. We met a HS manager named Mandy and she escorted us through all of the character lines and to Toy Story Land. She was the sweetest person ever and I wish I would have thought to get some contact info.
Hollywood studios was so adorable. We saw The Little Mermaid show which I have a video of. Hollywood Studios was the first coaster the girls went on that goes upside down!! AHHHH! They loved it! Avery's favorite part of HS was Rock 'n' Roller Coaster and Mya's favorite was the same one...and the Tower of Terror! 
Back to Universal to ride some missed rides, to do the Harry Potter train again and catch the parade. The parade was awesome and we had front row views! We had dinner at an awesome Mexican Restaurant outside of the at the City Walk. Delish!

Day 6
This was a village day! We went Ms. Merry's tea party early. We did some art at the castle then the pool was next followed by a dinner out and a live version of Candyland at night. Finally, we went to Twinkle Hope's Rockin Spa where the kids got temporary tattoos, Avery got a cool hair do and Mya got her nails and her face painted. There were treats at the Candyland party, candy trivia, games and dancing. A few tears from mom on this night watching Avery love on Ms. Merry and realizing this was our last night at this magical place. 

Day 7
Travel day. Time to leave this magical, amazing place. Lots of tears from Avery which was gut wrenching. This place meant the world to her...and you could tell with every single tear she shed. We can go back and visit but can't stay there again. Our goal is to positively go back asap! Wade and I will for sure volunteer there at some point in our lives and we will donate funds whenever possible. I can't say enough about Make-A-Wish and Give Kids The changed our lives. These places made us realize that there are people like us...that live this life...that only the ones that live it can relate to it. We were all in the same boat and there is something to be said about that. Upon departure we received a disc with photos from GKTW and the events there, a list of GKTW participants, Avery got another star to keep at home and we got a GKTW passport good for free admission into awesome places all over the US and Canada. Overall both girls say that the whole trip was their favorite part and our favorite part is being lucky enough to have a sweet wish kid and sissy to experience this trip with.
We finished up with a limo ride back home to freezing weather and lots of wonderful memories!
There are two links to pictures. Enjoy!

Monday, May 22, 2017

Pic line time

With the news of Immunosuppression starting we needed to do something fast for all these treatments coming up. We decided a PIC line was the way to go. Avery was getting all meds through IV up until now... we are starting with Oncology on in 3 days. She would have to be put under for placement of the line and like always that stresses us out. Avery was a champ and did fantastic and we are all set to go in 3 days! There are negative and positives with a pic line instead of a port(which at some point she will have)A pic line can't get wet, needs to have weekly dressing changes and needs to be flushed daily which we would be in charge of. Heading into summer our biggest worry was keeping it dry(no swimming etc. ) We became nurses overnight and caught on rather quickly. The dressing changes however did not go smoothly so we insisted on a nursing company to come to our house and change it weekly.
getting ready to go under

showing us where the line will be

after eating her purple popsicle

there it is! Purple means power!

Oncology...the start of it all

Oncology was a whole new world for us. I never dreamed we would be seeing the walls of the Oncology floor along with the several others that we already see. Oncology because of the drugs that go along with the suppression. Dr. Stockton is not familiar with these and Oncology uses these often. After all this immunosuppression is basically Chemotherapy just a different protocol than normal cancer chemo. Ours would be drawn out for several month but mainly the same drugs used during chemo. She would be getting Velcade, Methotrexate, Rituximab and IVIG this along with her bi-weekly infusion of Lumizyme. Starting chemo meant no more school and no more dance because of germs and here weakened immune system. She would be put on a running antibiotic of Bactrim( every M,W,F for the duration)This all was sickening for us! OMG Just when I thought things couldn't get we are sitting in the oncology waiting room and all three of us had no idea what we were about to go through.
waiting in the waiting room

psycho about gloves

read these and tell me you don't have a huge knot in your throat.

painting and passing time

dressing change time

no school letter

our protocol for the next few months

Tuesday, September 22, 2015

Eye and Pulmonary appts. 4-29-15

Time for more check-ups...and why not do two at once to save a trip. First up eyes with Dr. Roarty. He is amazing with her! She is maintaining and has a little near nearsightedness in her right? eye but nothing he is worried about. She will possibly need glasses once school becomes more demanding...but for now all is healthy and well.
Pulmonology checked out great too. They checked her breathing and Dr. Abdulhamid..also amazing..noticed right away that she has slight scoliosis which I thought was so amazing. These doctors are brilliant and are just special people! We are so fortunate! Breathing is fine and no worries there. Both appts scheduled in about a year!
med student checking her eyes

med student checking her eyes

stealing gloves...surprise

what gloves?

123 breathe....

what a trooper

Kindergarten Round up 4-20-15

Here we comes Kindergarten! WHAT and WHEN did this happen?!?!?! She was as big and brave as ever! Wade and I took her and she went with someone to get evaluated and she did great! Smarty pants! She is beyond ready....and Mommy is not :(

cardiology 4-17-15

Avery had her follow up yearly visit with the cardiologist(a new one). EKG and Echo were done and both are NORMAL! Her heart was enlarged with the original diagnosis..with treatment it is back to normal and maintaining! Doc said there is no evidence she even has Pompe by looking at her heart. Speaking of hearts..mine hit the floor when I heard that news! Amazing!  It is always a little nerve racking sitting there wondering and hoping everything is ok.
posing with a perfect heart, attitude and her new stroller!

new wheels 4-13-15

new wheels just arrived! LIFE CHANGER!! It's red, big and beautiful....the Kimba Kruze by Ottobok. This stroller was covered by insurance and took forever to get but it was worth every single second of waiting. It's equipped with things to even secure it in a bus if we needed to and will grow with her for several years. I do want to get a sun shade to go with it but that will come with time! .....and it fits like a glove into the back on the mini

delivery and adjustments


getting in on her own


like a glove!!