tag:blogger.com,1999:blog-52414990027766240742024-02-19T10:27:08.375-05:00Avery KayOur little MIRACLEShannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.comBlogger200125tag:blogger.com,1999:blog-5241499002776624074.post-57253628896244636492018-12-08T11:39:00.000-05:002018-12-08T16:33:17.942-05:00Make-A-Wish Trip 2018<div style="font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
<span style="font-size: 12pt;">Make-A-Trip 2018! </span><br />
<span style="font-size: 12pt;">Avery's wish was to go to Universal Studios and to get tucked in by the bunny at Give Kids The World Village.</span><br />
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<span style="font-size: 12pt;">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!</span><br />
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<span style="font-size: 12pt;">What a magical, amazing, fun, once in a lifetime experience! </span></div>
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<span style="font-size: 12pt;">This was a trip that is so difficult to explain..it 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!</span><br />
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<span style="font-size: 12pt;">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.</span><br />
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<span style="font-size: 12pt;">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!</span></div>
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<span style="font-size: 12pt;">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 part...it'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.</span></div>
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<span style="font-size: 12pt;">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)</span><span style="font-size: 12pt;">, 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!!</span></div>
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<span style="font-size: 12pt;">Day 2</span></div>
<span style="font-family: "helvetica";"><span style="font-size: 12pt;">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, </span>English<span style="font-size: 12pt;"> 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!</span></span><br />
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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!</div>
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Day 3</div>
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<span style="font-size: 16px;">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.</span></div>
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<span style="font-family: "helvetica";">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!</span><br />
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<span style="font-family: "helvetica";">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!!</span><br />
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<span style="font-family: "helvetica";">Day 4</span><br />
<span style="font-family: "helvetica";">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!</span><br />
<span style="font-family: "helvetica";">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!</span><br />
<span style="font-family: "helvetica";">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.</span><br />
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<span style="font-family: "helvetica";">Day 5</span><br />
<span style="font-family: "helvetica";">This would be our last park day we decided...so 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.</span><br />
<span style="font-family: "helvetica";">Hollywood studios was so adorable. </span><span style="font-family: "helvetica";">We saw The Little Mermaid show which I have a video of. </span><span style="font-family: "helvetica";">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! </span><br />
<span style="font-family: "helvetica";">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!</span><br />
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<span style="font-family: "helvetica";">Day 6</span><br />
<span style="font-family: "helvetica";">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. </span><br />
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<span style="font-family: "helvetica";">Day 7</span><br />
<span style="font-family: "helvetica";">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 World....it 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.</span><br />
<span style="font-family: "helvetica";">We finished up with a limo ride back home to freezing weather and lots of wonderful memories!</span><br />
<span style="font-family: "helvetica";">There are two links to pictures. Enjoy!</span><br />
<span style="font-family: "helvetica";"><a href="https://www.dropbox.com/sh/qul10kki7kedyz6/AADGP0Y2yxZUDIt9Rjdorguea?dl=0" target="_blank">https://www.dropbox.com/sh/qul10kki7kedyz6/AADGP0Y2yxZUDIt9Rjdorguea?dl=0</a></span><br />
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<a href="https://www.dropbox.com/sh/335ji6hxmrpw139/AAAdycmA4yq7SRsPFhK23PHHa?dl=0" target="_blank">https://www.dropbox.com/sh/335ji6hxmrpw139/AAAdycmA4yq7SRsPFhK23PHHa?dl=0</a><br />
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Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-27799038602206137822017-05-22T09:42:00.003-04:002017-05-22T09:42:44.194-04:00Pic line timeWith 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 5-4-15..so 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.<br />
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getting ready to go under</div>
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showing us where the line will be</div>
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after eating her purple popsicle</div>
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there it is! Purple means power!</div>
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<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-88786479855386489752017-05-22T09:40:00.002-04:002017-05-22T09:41:38.568-04:00Oncology...the start of it allOncology 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 worse...here we are sitting in the oncology waiting room and all three of us had no idea what we were about to go through.<br />
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waiting in the waiting room</div>
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psycho about gloves</div>
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read these and tell me you don't have a huge knot in your throat.</div>
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painting and passing time</div>
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dressing change time</div>
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no school letter</div>
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our protocol for the next few months</div>
Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-128496702710346142015-09-22T21:15:00.001-04:002015-09-22T21:15:33.049-04:00Eye and Pulmonary appts. 4-29-15Time 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.<br />
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!<br />
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med student checking her eyes</div>
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med student checking her eyes</div>
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stealing gloves...surprise</div>
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what gloves?</div>
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123 breathe....</div>
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what a trooper</div>
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<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-20474232835667994262015-09-22T21:04:00.001-04:002015-09-22T21:04:13.933-04:00Kindergarten Round up 4-20-15Here we go...here 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 :(<br />
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<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-25060676906280751782015-09-22T20:59:00.000-04:002015-09-22T20:59:10.536-04:00cardiology 4-17-15Avery 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.<br />
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posing with a perfect heart, attitude and her new stroller!</div>
<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-72026912278653207482015-09-22T20:53:00.001-04:002015-09-22T20:53:21.124-04:00new wheels 4-13-15new 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<br />
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delivery and adjustments</div>
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beautiful</div>
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getting in on her own</div>
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perfect</div>
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like a glove!!</div>
<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-85999989341119795042015-09-22T20:40:00.001-04:002015-09-22T21:00:37.913-04:00Chelsea's baby shower 4-11-15Avery's first home nurse, Chelsea had her baby shower on Saturday. We were all super excited to see Chelsea and we headed two hours north for the shower! It was a lovely shower and Chelsea looked amaz! We are so lucky to have met such an amazing person! Our current nurse, Cortney was there along with her son Hudson. After the shower we hit up #RL690...the old stomping grounds and ran into my dear friend Marcie. We followed lunch up with bring your own container slurpees:) and then a quick stop at my mom and dads. FUN DAY!<br />
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Avery, Chelsea(baby Hazel in her belly)Cortney and Mya</div>
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Avery and Hudson</div>
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Slurpees</div>
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Chillin and G and G Meyer's house</div>
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Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com1tag:blogger.com,1999:blog-5241499002776624074.post-24987430352625674822015-07-28T12:17:00.000-04:002015-07-28T12:17:22.773-04:00Easter 2015Easter was a great time like always! We have an Easter egg hunt at Grandma Donna and Grandpa Gene's with Lillian, Keaton, Mya and Avery. THEY LOVE IT! Avery had her casts on this year but that didn't stop her! She gathered so many eggs! It was freezing cold and we all had winter coats on..brrr.<br />
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Easter Bunny!</div>
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Sissy Mya so excited</div>
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Look what I got</div>
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Mya, Keaton, Lillian and Avery</div>
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Kay Kay finding eggs</div>
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this year she could open them on her own!</div>
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Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-68995028914755434682015-05-05T12:51:00.000-04:002015-05-05T12:51:00.907-04:00Genetics check up4-2-15 Time for a check-up with genetics. We are noticing some overall weakness with Avery. She will need to visit cardiology, pulmonology, and ophthalmology. Dr. Stockton also talked about her antibody levels. Her levels are at 102,000 and this is high for her. She is building antibodies towards the Lumizyme, the only drug avail. for treatment of Pompe disease. This is NOT good. Plan of action...Immunosuppression. This is the one thing we feared all along. Ok, she has pompe but was doing fine with the Myozyme and later Lumizyme so we just never thought it would come to this. Immunosuppression in this situation will consist of several drugs: Rituximab, Velcade, Methotrexate and IVIG. Each drug has a different job. Needless to say we were sick about this and had no idea what we were in for. A couple links to check out or google immunosuppression in pompe patients<br />
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<a href="http://quest.mda.org/news/immunosuppression-induces-tolerance-enzyme-treatment-pompe-disease" target="_blank">http://quest.mda.org/news/immunosuppression-induces-tolerance-enzyme-treatment-pompe-disease</a><br />
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<a href="http://www.cell.com/ajhg/abstract/S0002-9297(07)63878-6?cc=y=" target="_blank">http://www.cell.com/ajhg/abstract/S0002-9297(07)63878-6?cc=y=</a>Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-68890665512620949872015-05-05T12:22:00.002-04:002015-05-05T12:31:38.258-04:00more Botox and more serial casts4-2-15, More Botox injections needed to try and get more flexibility in her ankles and feet and to try to get her right foot to stop turning in so much. IT WAS BRUTAL THIS TIME! OMG! She screamed and was fighting. It was 8 injections and some hurt worse than others. I was holding her head and hugging her, Wade was holding her middle, the assistant was holding her legs/feet and the doc was injecting. Something I will never forget and I'm sure she won't either:(<br />
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4-3-15 First round of casts. There is a hope for about 6 casts depending on correction and speed of correction. Each foot will be measured and casted as needed.<br />
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taking her mind of the botox</div>
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letting her casts dry for 30 minutes..on grandpa's lap</div>
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Mya aka Sissy signing her cast</div>
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Cortney signing</div>
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<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-53769022277264834912015-05-05T11:58:00.002-04:002015-05-05T12:20:14.090-04:00Orthopedic Appt.3-25-15 Orthopedic appointment with Dr. Yassir at Children's Hospital. Dr. Dabroski(Physical Med Dr.) thought after reading the latest xrays that she needed to see Ortho. The person that read the xrays measured Avery's spine curve at 15 degrees. This was a big jump from the previous years. So bottom line we had this appointment and Dr. Yassir measured only 8 degrees, anyway he measured it. We are going to keep monitoring the curve and see Ortho yearly or as otherwise needed.Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-5080321007171975282015-05-05T11:50:00.000-04:002015-05-05T11:50:04.852-04:00Infusion 101, 3-23-15, Infusion 102, 4-6-15, Infusion 103, 4-21-15These 3 infusions have been a little tough. Avery is fighting the poke more and is starting to even fight the premeds. We have managed the headaches and she has been getting nausea the last couple times along with red cheeks and middle of the chest pain(not heart related) We are monitoring this and if it continues we will change things up again. We are giving Tylenol and Benadryl as premeds and still giving Ibuprofen 30 minutes into infusions for headaches.Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-13868565829678762302015-03-22T10:04:00.002-04:002015-03-22T10:06:25.490-04:00Time 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!<br />
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<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-46456032250107775882015-03-22T09:50:00.001-04:002015-03-22T09:50:38.734-04:00Spirit week 2015Spirit week at school ....and she was totally into it!<br />
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crazy sock day</div>
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crazy hair day</div>
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mismatched day</div>
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professional day...what do you want to be when you grow up? Avery wants to be a doctor of course</div>
<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-74176273813220586362015-03-22T09:45:00.001-04:002015-03-22T09:45:21.229-04:00Mya turns 7Mya'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.<br />
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<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-67917937838687983452015-03-22T09:37:00.002-04:002015-03-22T09:37:20.524-04:00Children'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<br />
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<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-81352821808390841602015-03-22T09:27:00.000-04:002015-03-22T09:27:58.373-04:00Christmas 2014Christmas...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.<br />
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!<br />
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Gus with Mickey ears</div>
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Gus built a book castle</div>
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breakfast with Gus</div>
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Avery the red nosed reindeer</div>
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Christmas Eve G and G Nagelkirk's</div>
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Cookie decorating with Anne, Jason, Marlow and Knox</div>
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Gift time</div>
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Trying on Marlow's clothes</div>
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Santa came</div>
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Christmas morning 2014</div>
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Rose her doll, she has Pompe</div>
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Christmas Day and G and G Meyer's</div>
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Gift time and G and G Meyer's</div>
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Painting with Marlow and Knox</div>
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Anne and Knox</div>
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Jason and Marlow</div>
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Miss A doing art</div>
<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-12645207144452138812015-03-22T08:59:00.000-04:002015-03-22T08:59:33.770-04:00INFUSION 100!!! 3-12-15A 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!<br />
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same picture every week....sleeping beauty</div>
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all her goodies including her clothes:)</div>
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Mya and Avery...excited for 100!!</div>
<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-1737455490661582882015-03-09T10:39:00.002-04:002015-03-22T08:46:37.040-04:00Infusion 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, 2-25-1592 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.<br />
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Chelsea's last day. She gave Avery a beautiful necklace! She is one AMAZING person!</div>
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during infuion</div>
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bribing her with Doritos..no shame!</div>
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after one of her headaches</div>
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she was dreading her infusion, she has numbing cream on here</div>
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Miss Cortney playing with Avery. We were blessed with Cortney as well!</div>
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infusion 99...checking her heart:)</div>
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Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-1669695377254880332015-03-09T09:58:00.003-04:002015-03-09T09:58:41.853-04:00Disney 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! <a href="https://www.flickr.com/photos/124015053@N03/sets/72157650839517899/" target="_blank">https://www.flickr.com/photos/124015053@N03/sets/72157650839517899/</a><br />
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<br />Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-24206378997877977462015-02-25T12:02:00.000-05:002015-02-25T12:02:09.635-05:00Thanksgiving FeastAvery had a Thanksgiving celebration at school. They gather the young 5's and kindergartners in the lunchroom and all the classes bring things to share. It's neat! They make cute hats and place mats and it's adorable! Mya got to come to this along with me because she had a half day! <br />
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Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-79553025181112130272015-02-25T11:45:00.000-05:002015-02-25T11:45:05.171-05:0011-13-14 Dabrowski aptAvery's foot/ankle is still not where the doc would like it so we will have to do more botox injections and another casting. Yes she just got the casts off but we didn't get the stretch we needed to get to have her foot/ankle bend the way it should when walking. The problem...insurance will only approve these injections after a certain amount of time and we won't be eligible until Dec 20...which we all decided we would wait til after the holidays. At this time we didn't know that our Dr. would be having knee surgery and would be off of work for several weeks. Here we are now ..end of Feb and he is still not back. Avery's braces have had several adjustments but still are causing her pain because of the growth of her foot. The brace is basically molded to the exact shape of her foot at that time and last about 6 months(or until she grows) So she was having really horrible discomfort with them. Her teacher was having to remove them in the afternoon and give Avery a break from the pain:( We are finally at a point that she goes the school day without pain. Phew, for now! The Dr. also ordered hip and back x-rays as regular maintenance. We got x-rays within the next couple of days and I got a peek at the new ones and my jaw dropped. It is one of those times that you will never forget. I could see the curve in her spine. I've always been so worried because I have severe scoliosis and scoliosis is common in Pompe patients mostly from the muscle weakness. About a year and a half ago her curve was only 5 degrees...and I knew what I was looking at was not 5 degrees. We would get the results at our next appt. with doc or I could email him for results. I emailed dr(and he responded but needed more info etc so I sent what he needed and he didn't get back with me, which is odd for him and I lost track and here we are late Feb) I just talked to his office and got the info..her curve is up to 18 degrees..NOT GOOD! OMG freaking out here! She said they usually don't do much til it is at 20 degrees. But from 2013 to late 2014 it changed from 5 to 18 degrees.<br />
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ready to get x-rays! such a champ.</div>
Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-32614458322387473052015-02-25T11:08:00.000-05:002015-02-25T11:08:17.766-05:0011-5-14 new bracesTime for new braces! Casts came off and her new braces are in....purple butterflies! It is always great to have nice, new and great fitting braces. This pic was a fitting between casts. She would have another cast after this and then start therapy. Physical therapy is needed to get her strength back after having a cast on and not really using that leg.<br />
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Trying to strengthen the left foot</div>
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face plant</div>
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where's Avery</div>
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Mary is stretching Avery so we are entertaining her with HI HO CherryO</div>
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Shannonhttp://www.blogger.com/profile/10784347711135527805noreply@blogger.com0tag:blogger.com,1999:blog-5241499002776624074.post-10468597765497510552015-02-25T10:53:00.001-05:002015-02-25T13:58:58.643-05:00Trick- or- Treat Halloween 2014Halloween 2014, my favorite time of the year! We have a tradition every year that Mandy brings her kids to Holly and we go Trick-or-Treating around town. I LOVE THIS TRADITION!!! Avery was a butterfly this year and was in love with this idea. She had a school party and got to dress up and do a parade around school and big sister Mya got to come too....and I got to be there of course;) Needless to say the wings are destroyed now from the evening. We had to put her in a stroller and carry her up to most doors..so all the in and out ruined them. Avery was such a trooper though! And super Daddy carried her up to most doors...so hard! I carried up to like 2 doors and was done! My back was killing me!<br />
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