Gavin's Wish Comes True!! MAW

[Momofwishkid]

I have the most exciting news We have been chosen to be apart of the Big Give!! I am so exited and greatful. I just started crying when I opened the PM asking us to be a part of it. These people have such huge hearts and are so talented. Im so overwhelmed with all the support and kindness everyone has shown to us and Gavin's wish trip and now the Big give have been a huge part of helping me cope with everything that has happened in the past 6 months. As some of you may know Gavin's diagnosis of multiple rare brain tumors called cavernomas is pretty new and something we are still dealing with accepting. Im in that stage of accepting but being obsessive about finding info on this condition. Which hasnt been easy since not only is it rare but the way his has progressed so rapidly is extremly rare. Anyway Im rambling now, my point is having all this good stuff to think about and yes obsess about has given me a much needed break from thinking of the bad stuff. Im so thankful I found this board and hope any lurkers out there will join because it's not just a disney board it's a wonderful support system. Thank you Thank you to all involved in the Big Give and to my fellow Wish families for the support you have given.

 

[pipersmom]

Woohoo...I am so excited for you!! I was hoping you would be sharing that news The boards are great, aren't they?? I know exactly what you mean about having good things to think about for a change!

 

[cantwaittoseemickey]

Yayy for the BIG GIVE I can't wait to see all the neat things the wonderful people send to you all!

 

[scouthawkk]

Hi, Jennifer I'm a Jennifer, too. And my DH is also in HVAC (he is union, IUOE Local 99 here in Maryland). But his name is Ben, not Joe (but my middle name is Jo, does that count?). Found you through the Disbotique board. I lurke there (one of these days I may get the courage to actually post there, too, but my stuff isn't nearly as fantastic as theirs). But I linked here through their BigGive for your son. I actually did sign up for the give this time, my first.

I've been sewing for a couple of years now. Mostly for my own son, very excited about making stuff for others.

I look forward to the rest of your PTR, and hope to find a post trip report when you return. If I read correctly, it appears you may be at Sea World on what would have been my mom's 62nd birthday (March 4th). I acutally used to work at Sea World when the had a park in Ohio (didn't make much sense to me, either, but it paid ok for a college student on summer break). I've also been to the one in California with a Girl Scout trip. But haven't been to the one in Orlando. Maybe one day...

Best wishes and prayers for your family.

Jen

 

[pnutallergymom]

Hi Jennifer!!!

That is soooooo awesome about the BIG GIVE!!! Can't wait to see the pics of all the wonderful things you guys will receive!!!

I just adored the paper lanterns. What a great idea!!! I've got to get on some of this stuff!!!!

 

[Momofwishkid]

Woohoo...I am so excited for you!! I was hoping you would be sharing that news The boards are great, aren't they?? I know exactly what you mean about having good things to think about for a change!

Thanks Amanda, we are so excited. You should have seen the kids when I showed them some of the clothes that are designed. They were jumping around and couldnt believe someone is going to make stuff for Them!

Yayy for the BIG GIVE I can't wait to see all the neat things the wonderful people send to you all!

Thanks! We cant wait to see them either it's so exciting!

Hi, Jennifer I'm a Jennifer, too. And my DH is also in HVAC (he is union, IUOE Local 99 here in Maryland). But his name is Ben, not Joe (but my middle name is Jo, does that count?). Found you through the Disbotique board. I lurke there (one of these days I may get the courage to actually post there, too, but my stuff isn't nearly as fantastic as theirs). But I linked here through their BigGive for your son. I actually did sign up for the give this time, my first.

I've been sewing for a couple of years now. Mostly for my own son, very excited about making stuff for others.

I look forward to the rest of your PTR, and hope to find a post trip report when you return. If I read correctly, it appears you may be at Sea World on what would have been my mom's 62nd birthday (March 4th). I acutally used to work at Sea World when the had a park in Ohio (didn't make much sense to me, either, but it paid ok for a college student on summer break). I've also been to the one in California with a Girl Scout trip. But haven't been to the one in Orlando. Maybe one day...

Best wishes and prayers for your family.

Jen

Hi Jen and Welcome! It seems we have some things in common My hubby isnt with the union although is lookig into applying for a job with a union company. The one he's with now isnt doing to well and is asking everybody to take a pay cut. Thank you so much for signing up for the Big Give! I am so touched and cant wait to see the awesome things the kids receive and you should definetley post on the disboutiqers board. They all seem like kind amazing helpful woman and Im sure they would be welcoming.
Yes,we will be at Sea World on the 4th of March and cant wait. We are all big time sea life freaks around here so it's bound to be one of our favorites! Your mom will be in my thoughts while were there.

Hi Jennifer!!!

That is soooooo awesome about the BIG GIVE!!! Can't wait to see the pics of all the wonderful things you guys will receive!!!

I just adored the paper lanterns. What a great idea!!! I've got to get on some of this stuff!!!!

Hi, I will definetley be posting tons of pics of the Big Give items I cant wait to show them off. You have got to start doing DFN's they are so much fun and you can make it as simple and stress free or as creative as you want. I've learned the kids could care less as log as their having fun!

 

[kellyw8863]

Congrats on the Big Give!

I love reading about your DFN and looking at the pictures. I can't wait until we have dates so we can do more of that stuff without feeling like we're jumping the gun. I already feel that way having started a PTR. I hear you on having something else to focus your energy on. My husband teases me for spending so much time here and for making Disney plans when things aren't even written in stone yet, but he doesn't understand as the family's chief researcher, that it is so nice to research and obsess over something that isn't followed by the word "disease." Unless, of course, you count Disney fever.

Thanks for posting all the pictures. I look forward to following along!

 

[pnutallergymom]

Hi Jennifer,

I was reading on Mattys TR that you guys will be at US for Mardi Gras!! We were there last year....Pat Benatar was the concert.

We actually had my mother stay in with the kids and we got a Night Out!! The parade was AMAZING!!! So was the concert...

I will just add that it is CRAZY. I think you will love it, but just wanted to forewarn you that there are a TON of adults drinking... They throw beads out at the crowd and people (adults) literally seemed to be killing each other over getting these beads!!!!

The park was beyond crowded and I think that I would have to think twice about bringing my little ones if we were ever there during Mardi Gras again. Bryan and I had a blast!!!......but I can see where it could even get a little dangerous for the kids.

You would have the GKTW button, so wouldn't have a problem getting on rides, but we never got on a single ride the entire night we were there...that is how busy it is. The lines for drinks, snacks etc......worst I have EVER seen it.

So, good luck with what ever you decide!!!! Just wanted to give you a heads up!!!

 

[kdzbear]

Congrats on being chosen for the Big Give! Your family deserves it!

 

[Momofwishkid]

Congrats on the Big Give!

I love reading about your DFN and looking at the pictures. I can't wait until we have dates so we can do more of that stuff without feeling like we're jumping the gun. I already feel that way having started a PTR. I hear you on having something else to focus your energy on. My husband teases me for spending so much time here and for making Disney plans when things aren't even written in stone yet, but he doesn't understand as the family's chief researcher, that it is so nice to research and obsess over something that isn't followed by the word "disease." Unless, of course, you count Disney fever.

Thanks for posting all the pictures. I look forward to following along!

Hi Kelly, Thanks. I cant wait for you to get your dates also. I started my PTR before our dates and remember how hard it was during that waiting.

Hi Jennifer,

I was reading on Mattys TR that you guys will be at US for Mardi Gras!! We were there last year....Pat Benatar was the concert.

We actually had my mother stay in with the kids and we got a Night Out!! The parade was AMAZING!!! So was the concert...

I will just add that it is CRAZY. I think you will love it, but just wanted to forewarn you that there are a TON of adults drinking... They throw beads out at the crowd and people (adults) literally seemed to be killing each other over getting these beads!!!!

The park was beyond crowded and I think that I would have to think twice about bringing my little ones if we were ever there during Mardi Gras again. Bryan and I had a blast!!!......but I can see where it could even get a little dangerous for the kids.

You would have the GKTW button, so wouldn't have a problem getting on rides, but we never got on a single ride the entire night we were there...that is how busy it is. The lines for drinks, snacks etc......worst I have EVER seen it.

So, good luck with what ever you decide!!!! Just wanted to give you a heads up!!!

Thank you thank you for this info. I had been wondering how it would be for the kids. I think were going to pass on it this trip. It appears to only be on Saturdays and as much as I would love to see it. It dosent sound like the rght enviornment for the kids. I really appreciate the info.

Congrats on being chosen for the Big Give! Your family deserves it!

Thank you! I am loving your TR and all the photpass pics. Good job!

 

[cantwaittoseemickey]

The dates are getting CLOSER!! It's almost crunch time

The whole Mardi Gra thing has me a bit concerned. I keep forgetting about it being the week we are there. I need to look that up again.

 

[teresajoy]

I have the most exciting news We have been chosen to be apart of the Big Give!! I am so exited and greatful. I just started crying when I opened the PM asking us to be a part of it. These people have such huge hearts and are so talented. Im so overwhelmed with all the support and kindness everyone has shown to us and Gavin's wish trip and now the Big give have been a huge part of helping me cope with everything that has happened in the past 6 months. As some of you may know Gavin's diagnosis of multiple rare brain tumors called cavernomas is pretty new and something we are still dealing with accepting. Im in that stage of accepting but being obsessive about finding info on this condition. Which hasnt been easy since not only is it rare but the way his has progressed so rapidly is extremly rare. Anyway Im rambling now, my point is having all this good stuff to think about and yes obsess about has given me a much needed break from thinking of the bad stuff. Im so thankful I found this board and hope any lurkers out there will join because it's not just a disney board it's a wonderful support system. Thank you Thank you to all involved in the Big Give and to my fellow Wish families for the support you have given.

Jennifer, thank YOU! I'm so happy you are excited and that the Give can help take your mind off some of the bad stuff you've been dealing with. We are all excited that you wanted to participate! And, I agree, this board is sooo much more than just about Disney! There are so many wonderful people on here.

 

[yinyanggirls]

WOOHOO for the Big Give! It's going to add so much excitement to your pre-trip planning.

 

[Momofwishkid]

The dates are getting CLOSER!! It's almost crunch time

Yes they are we have 1 month 3 weeks left!! It's going by so fast I almost want it to slow down. (almost)

The whole Mardi Gra thing has me a bit concerned. I keep forgetting about it being the week we are there. I need to look that up again.

Im pretty sure we've decided not to do it this trip. Not that were likely to go back but it just dosent sound like a good friendly family time.

Jennifer, thank YOU! I'm so happy you are excited and that the Give can help take your mind off some of the bad stuff you've been dealing with. We are all excited that you wanted to participate! And, I agree, this board is sooo much more than just about Disney! There are so many wonderful people on here.

Theresa, Again Thank you. You are soo sweet. I am getting very anxious about the Big Give and really am hoping to be able to do something for another family when we get back.

WOOHOO for the Big Give! It's going to add so much excitement to your pre-trip planning.

Thanks Melissa. Isnt it soo exciting! It really does add to the excitment, we cant wait.

 

[Momofwishkid]

In trying to get back on schedule. It's time for another DFN this week was
Monsters Inc!!

We decided to let the kids eat while watching the movie this week. It was already getting late. Nothing special with the menu but I can sure name things. We have Sully spaghetti and Boo bread

Then we played a little game I found on the Disney thread board. You roll a die and have to draw that many body parts to make your monster (ie: 4 heads 3 eyes and so on)

Then we were supposed to decorate our cookies like Mike and Sully but the kids just put on some candy and called it good.

My cookie that's supposed to be Mike but it looks more like Plankton from Spongebob

I just love that little Boo, she's soo cute! Do they have Boo at the parks or just Mike and Sully??

I have some good news. Gavin rode his bike today!! The first time since his surgery and his muscles have been so weak. Poor boy his birthday was 5 days before he went in the hospital and we had gotten him a new bike. He never got to ride it and that was the first thing he wanted to do when we came home but he tried and just was to weak and had no control over his hand to steer. Well today he did awesome. He only made it about a block if that and just got to tired but he rode it and I was so happy!!

 

[StefaniLyn]

Love Monster's Inc Movie Night! That game looks like a lot of fun, we'll have to try it sometime. And that cookie really does bear a strong resemblance to Plankton!

It is heartwarming to see the photos of Gavin riding his bike. He must have been so disappointed not being able to ride it right away! What a special day!

 

[yinyanggirls]

Hurray for movie night! I love Monsters Inc. I wonder if Tessa would like that one. Her daily request is Monsters vs Aliens, so maybe the whole monster connection would draw her in? I think we just might eat in front of the tv every time because it worked really well last time. Not only does it compact the time, it gave Tessa something to do while the movie gets going and she's not interested yet. I usually annoy my husband and make my family eat at the dining table so they should love the break from the routine. Your kids certainly didn't seem to mind! (oh, and good job on naming the food!) Loved your creations too!

 

[Momofwishkid]

Love Monster's Inc Movie Night! That game looks like a lot of fun, we'll have to try it sometime. And that cookie really does bear a strong resemblance to Plankton!

It is heartwarming to see the photos of Gavin riding his bike. He must have been so disappointed not being able to ride it right away! What a special day!

thanks Stephanie, you really should try the game. The kids loved it and you come out with some pretty funny monsters.
Gavin riding his bike was really special, it just proved that he's getting back some of the functions that were lost and we didnt know if he'd ever get back.

Hurray for movie night! I love Monsters Inc. I wonder if Tessa would like that one. Her daily request is Monsters vs Aliens, so maybe the whole monster connection would draw her in? I think we just might eat in front of the tv every time because it worked really well last time. Not only does it compact the time, it gave Tessa something to do while the movie gets going and she's not interested yet. I usually annoy my husband and make my family eat at the dining table so they should love the break from the routine. Your kids certainly didn't seem to mind! (oh, and good job on naming the food!) Loved your creations too!

I think she would like it if she's into monsters that are cute and cuddly! I would definetley try it.

 

[cantwaittoseemickey]

The Monsters game sounds really neat. Way to go Gavin riding your bike

 

[scouthawkk]

LOL Matty hates the noise that accompanies the fireworks too and that makes it really hard to go and enjoy them without feeling like we are traumatizing him. He is better than he used to be....................he used to scream and cry. Kind of made me wonder if it were actually 'louder' for him and perhaps caused some sort of discomfort his reaction was so severe. He doesn't cry now but still holds his ears and winces. Maybe we should consider ear plugs in the future as well.

Pamela

Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607

Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

I wanted to comment on the noise and earplug thing. For DS, we used (and sometimes still do) the Mack's brand silicone ones (http://www.macksearplugs.com/pillow_soft_silicone_earplugs.htm). At first it was to keep water out of his ears because of his tubes, but then he started not liking loud noises, fireworks in particular! That was right after he had the tubes inserted, and it dawned on us that he was finally hearing properly for the first time (at 16 months). So we started using the silicone plugs for fireworks, hockey games, or anything else he was afraid of being too loud. Blocked out enough of the loud noises for him to be comfortable, but still allowed him to hear enough to listen to directions or be able to have a regular conversation. He never liked the kind that go into the ear, so these worked great!

Jen