Drew's Wish Comes True...

Hi!!! What a very touching story! God Bless Drew, he is too stinking cute!!! He looks like he has so much joy in his life!

I'm very excited for you all and Drew!!!! Can't wait to hear more of your plans and for you trip to be here. It will be before you know it.

Lynn :)
 
I just wanted you to know that I am subscribing to your trip report! :) I can't wait to hear more!! :)
 
Hi!!! What a very touching story! God Bless Drew, he is too stinking cute!!! He looks like he has so much joy in his life!

I'm very excited for you all and Drew!!!! Can't wait to hear more of your plans and for you trip to be here. It will be before you know it.

Lynn :)
Thank you so much Lynn. I am so blessed to be Drew's momma. He is one amazing boy (if I do say so myself :love: )

I just wanted you to know that I am subscribing to your trip report! :) I can't wait to hear more!! :)

Thanks :) We are so excited. I've loved reading about your trip too
 
I think our plans are set, at least for now. I know they will probaby change again but that's what happens when you have to be flexible.

Dec 17 - Arrive Orlando 10:30pm
Dec 18 - Universal Studios. GKTW Christmas Party
Dec 19 - Sea World. MVMCP @ MK dinner at Tony's
Dec 20 - MK breakfast at CP for traditional Drew & Pooh pic
Dec 21 - DHS watch Fantasmic and then Candyland Party @ GKTW
Dec 22 - AK/Epcot late lunch @ Garden Grill. Candlelight Processional @ 6:45
Dec 23 - Leave Orlando 11:10am
 

Im in for your PTR!! What a magical time to be getting to go to Florida- during the holidays..

Your plans sound great! Cant wait to hear more..
 
Just found your PTR! What a group of cuties you have!!! My oldest has epilepsy, but thankfully has been seizure free for just over 2 years now. Can't wait to get to know you all better!
 
I'm looking forward to reading all about your planning and trip in the coming months. Your family is so cute!! I hope you have a wonderful time!!
 
Im in for your PTR!! What a magical time to be getting to go to Florida- during the holidays..

Your plans sound great! Cant wait to hear more..
Thanks :) We are so very excited to be going at Christmas time. We've dreamed of a Disney Christmas for years

Just found your PTR! What a group of cuties you have!!! My oldest has epilepsy, but thankfully has been seizure free for just over 2 years now. Can't wait to get to know you all better!
Thank you. How cool to be seizure free. We pray that day comes for Drew.

I'm looking forward to reading all about your planning and trip in the coming months. Your family is so cute!! I hope you have a wonderful time!!

Thank you :)
 
I knew that MAW would grant Drew's wish but I never knew or even thought they would add in other things. Yesterday they sent us to see Circus of Dreams in Seattle. It's an Aerialist Circus, the most amazing show I've ever seen. The kids were all impressed and totally enjoyed the show.

We really needed this after our very sad week. Some wonderful friends and neighbors of ours, one of the most amazing families I know, lost their daughter last Monday to DIPG Cancer. It's so incredibly sad. Her funeral was Friday. We needed something fun to do as a family.

Here's pictures of our day. It was an absolutely beautiful day so after the circus we drove through downtown and along the waterfront.

Checking in and getting their "clappers" and gift bag of stuff from Children's Hospital
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Which were quicky turned into swords
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The kids really enjoyed the show
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After the show we got to go backstage and talk with the performers and have treats. The kids really enjoyed that.
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Madilynn was our Autograph Expert. She loved getting everyones autograph and was constantly on the hunt for a new one. It was so cute.
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Ryan especially liked the Pirate Girls
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The show was amazing. All the kids had fun. A much needed beautiful day.
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I received a PM on Thursday from a member of the Big Give group asking if they could include our family in their continued amazing service. I sat and cried and cried. It's very overwhelming to know so many thoughtful and caring people are willing to put so much time and effort into making all these children, and their families, feel so blessed - to make their trip so amazing.

I've spent the last couple of days looking at pictures of some truly amazing creations. So inspiring. I can only dream of being able to sew like that. Anyway, I came across a link with detailed instructions so Madilynn and I made these tonight. It was so fun. She was so excited. Now I just need to get clips to glue them too.
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And seeing as I was taking pictures of the bows Madilynn wanted me to share her new bracelet that she bought yesterday too :)
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What a beautiful family you have. Drew is a cutie. I can't imagine what it is like for the little guy to have to live with so many seizures. I hope the nerve stimulator has him seizure free soon. I'm sure your trip will be just amazing.
 
Made it over from the Big Give board and I'm subscribing. How magical...a wish trip at Xmas!!!! :banana:
 
What a beautiful family you have. Drew is a cutie. I can't imagine what it is like for the little guy to have to live with so many seizures. I hope the nerve stimulator has him seizure free soon. I'm sure your trip will be just amazing.
Thank you so much. This month has brought us many trials and hard days. With some good friends of ours daughter passing on from DIPG Cancer, we've also been learning to be thankful for each day, good or bad.

Made it over from the Big Give board and I'm subscribing. How magical...a wish trip at Xmas!!!! :banana:
Welcome :) Thanks for joining us on our journey. Every time I tell people about the Big Give or read about it, it brings tears to my eyes. You all are so very kind and giving.

I am so very excited about going at Christmas. It's been a dream of mine for many years. When our Oct & Nov dates were turned down (GKTW was already full), I cried that we would actually go in Dec.

How are things going? Hope all is well.

Thank You. It's been a rough few weeks. But we are doing SO much better now :)
 
October has been a very busy month. I can't believe it's already over. Thankfully we got the kids to the pumpkin patch/corn maze on the one weekend Drew was feeling well.
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And I'm adding this one to show what a terd Meagan can be. Getting a good picture of 5 kids is quite a chore. More often than not she shuts her eyes on purpose (or sticks out her tongue or makes a funny face) just as I click the picture. So here's my payback :)
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Drew caught a cough somewhere and that brought on a major increase in his seizure activity. Because of the increased seizures I was using his magnet more (it turns on his VNS). My mom had agreed to watch the boys for me while a ran to pick Meagan up from the college. Before I could get back mom had called to say Drew was having pain in his neck. This is the complaint he had back in May when his lead went bad (the lead goes from the pulse generator and hooks to his Vagus Nerve). I decided to bring him home and watch him. I could tell him implant was still going off but as his seizures increased and his pain intensified I became more concerned. I called the Nurse Line and we were quickly on our way out the door for the hour+ drive to Seattle Children's. Our Dr (who we love and cherish) would wait for us in clinic to make sure he was seen. Thank heavens his lead & generator were fine.

The cough was causing more seizures so I used the magnet more, using the magnet more irritated the Vagus Nerve, irritation of the Vagus Nerve brought on pain and discomfort, pain and discomfort brought on more seizures. It was a rough few days until we got that nasty cough under control.

The next weekend Drew was chosen to be the MAW "Lucky DAWG" at the University of WA football game. It was such an awesome experience. He carried the football they gave him around for days. It even went to school the next week, in his backpack, so he could share it with his classes. Watching him tossing the ball with the Husky Mascot was so overwhelming. It was definitely one of the highlights of his day. Two of my sisters, one BIL, one niece and two nephews got tickets to the game to support Drew. MAW gave us tickets for Drew, Steve, Zander and I. My mom was all too happy to stay home with the little ones. The highlight for me, besides tossing the ball, was to be on the field with a flag that big while our national anthem was sung. I have never seen a flag that big before and as the color guard started the flag rippling as they sang O say, does that star-spangled banner yet wave I couldn't help but cry. Then the National Guard did a fly by. Very cool. A day forever etched in my heart.

Here's pictures I took
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And the pictures MAW took and sent to us on CD
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We also attended a balloon release at my kids school for our sweet friend Mara, who lost her 11 mo battle with DIPG Brain Tumor. She is one of the most amazing little girls. Her family's some of the most wonderful, christ-like people I know. I've learned so much from this family and am very honored to have them as friends/neighbors. Here's my girls just before the launch (the boys were with their classes) and a picture of the sea of purple pearls in the sky
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And one last picture, that still brings tears to my eyes. It's taken hours and hours of practice and an amazing amount of determination.
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This is my Ryan. We've been counting down the time to Drew's trip by family milestones. Ryan's 6th birthday passing means we are one step closer. Just Halloween, Madilynn's 5th Birthday & Thanksgiving left :cool1:

So here's my sweet baby boy from birth -6
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you guys have been busy!

Love ALL the pictures!!
 








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