Ty-bugs MAW pre-trip to ride Jaws and go to Disney! July 10-16 2010

[cantwaittoseemickey]

Dh and I were sitting on the couch today talking since they were working on our electric. We had no electric for 5 hours He looks at me and says "NOW i'm getting excited about Disney" I told him it's about time lol.

Then yesterday I was on the phone asking about our ressies for Garden Grill to make sure we had the right time (yep) and they have me on hold and Ty looks at me with this hilarious face. "I HEAR DISNEY MUSIC!" He made sure to tell me that we are taking his cooling vest. Although I need to ask on the Wish trippers thread about packing that

 

[kellyw8863]

Yay for the Big Give! They are an amazing group of people. I'm hoping to get involved myself once I get my TR all done. As for the cooling vest, Ali's mito doc told us not to bother with her. They really only work if there is little to no humidity, as they rely on evaporation in order to cool. Instead, we put ice in her enteral bags and bought misting fans at the Wal-Mart down the street from GKTW ($7 as opposed to $20 in the parks). And other than that, we just resigned ourselves to the fact that we would not be spending any afternoons in the parks. It all worked out, as the girls LOVED being at GKTW.

 

[cantwaittoseemickey]

Yay for the Big Give! They are an amazing group of people. I'm hoping to get involved myself once I get my TR all done. As for the cooling vest, Ali's mito doc told us not to bother with her. They really only work if there is little to no humidity, as they rely on evaporation in order to cool. Instead, we put ice in her enteral bags and bought misting fans at the Wal-Mart down the street from GKTW ($7 as opposed to $20 in the parks). And other than that, we just resigned ourselves to the fact that we would not be spending any afternoons in the parks. It all worked out, as the girls LOVED being at GKTW.

We have the one that that uses evaporation but we also have the "sta cool" vest. It actually has these little icepack things in it. There are 2 in the front and 2 in the back. He loves this one and wears it anytime it is warm outside. He has already asked for us to take it with us. I was wondering how to pack the icepacks that go with it but I think I just figured it out. As of right now we will have to take some meds that must be frozen until use. So I could use those as the icepaks to keep to keep his meds cold. I am assuming I can carry on his meds in that cooler back and they shouldn't count against our carry ons.

 

[yinyanggirls]

Wow, you've had so much great news lately. I'm so happy for you guys!!!

 

[cantwaittoseemickey]

Wow, you've had so much great news lately. I'm so happy for you guys!!!

Thank you We are so greatful for things looking up!

Ok so a little more good news today! The DME guy called today and he is coming to the house this week to take a look at Ty's wheelchair to see if we can swap his handles and seat from his old wheelchair and put it on his new one. His old one just will not fold as the frame is messed up and his seat has his name on it and supports him alot better when he needs it. Granted he is not in it full time but when he is a little better support can certainly help. But we just arent sure they are compatable. He is driving a LONG way and we are so greatful.

Also after a bit of persistance we can have Ty's sleep study done close to home. That saves us from having to get a hotel room for the night which really helps. They wanted it done at the main hospital b/c of his gtube. But it all worked out. It is scheduled in June.

We hope to hear about our flights very soon. I'm getting a bit nervous about flying again. Im just not a great flyer at all but I know I can do this for my Ty. (I might need a bit of encouragement from my dis family)

 

[cantwaittoseemickey]

Found Ty some sandals to go over his afo's so he wont have to wear tennis shoes through the airport

 

[kdzbear]

Found Ty some sandals to go over his afo's so he wont have to wear tennis shoes through the airport

This is so exciting! Where did you find them? I am always on the look out for new shoes to go over Tyler's AFOs. I found the Hatchbacks website, but the shoes for boys are quite ugly while they have cute ones for girls!

 

[cantwaittoseemickey]

The ones I found are actually mens sandals.I like them much better then ones I have seen lately.

Here is a pic from this morning he was worn out and slept pretty much till it was time to catch the bus. He worked hard with daddy yesterday.

 

[kdzbear]

The ones I found are actually mens sandals.I like them much better then ones I have seen lately.

Here is a pic from this morning he was worn out and slept pretty much till it was time to catch the bus. He worked hard with daddy yesterday.

Those look comfy. My Tyler still wears a 7T, which is the same size his 2 year old sister wears. It is so hard to find such tiny shoes! However, I had not given much thought to sandals. I think I will look into that.

 

[cantwaittoseemickey]

Sandals are so much easier in the summer. Easy on and easy off and they allow some air to get to Ty's feet. I might be able to get him in a 6boys but those are so hard to find. Im still on the lookout for another pair. I hope you find something. Ty has a big foot. I miss the kids sizes with both of my kids. Sierra wears my shoes. She grabs mine instead of hers

 

[yinyanggirls]

This is so exciting! Where did you find them? I am always on the look out for new shoes to go over Tyler's AFOs. I found the Hatchbacks website, but the shoes for boys are quite ugly while they have cute ones for girls!

I love Hatchbacks, but I agree the boys aren't that cute. I have never bought the tennis shoe looking shoes from them because I don't care for the look. It's so fun to have patent leather MJ's for her to wear with the AFos though.

Love the sandals! I am so lazy and hardly ever put her AFOs on in the summer, but now that she has a walker, I probably will have to.

 

[cantwaittoseemickey]

I definately give Ty breaks out of them. Especially when he has so many bruises we give them time to heal. They aren't from the braces but rather from any little bump due to his Von Willibrands so if I start noticing alot he gets a break. He also gets a break on Gym days too. He was in Big Shots for a while (the bigger version of sure steps) and those were so much easier. I wish they would have worked out.

I tried to get him some hatchbacks a few years ago and they didn't come in his size. We have been getting Keeping Pace (they are getting ready to redo their line so keep an eye out next year) and tried the Answer2 but those didnt seem to hold up as well as KP. I hope KP has a few more kid friendly styles in the future.

 

[cantwaittoseemickey]

The kids recieved thier first BIG GIVEpackage today!!

Thank you so much to the Laxton family! I'm so sorry I do not know your DIS name. Both Ty and Sierra both got a Disney gift card for $50 each!!!

Here they are after they just opened them

Then Ty realises what they are

Thank you so much! The kids are already trying to decide what they want to buy with them. I hurried and tucked them away in the suitcase already

 

[cantwaittoseemickey]

I just realised the paint showed up on the wall in one of the pictures. Instead of just painting a small strip of a "possible" paint color dh decides to put a huge strip of it on the wall lol

 

[wishin' on a star]

Yippee for your first Big Give package! I'm sure your kids can find somewhere to spend that money!!

 

[llaxton]

I am glad they liked them! I thought they might enjoy picking something that is special to them there. I hope you guys have an awesome time!

 

[Mtopher4]

AWESOME Big give ;-)

 

[kdzbear]

Great Big Give gift! I am sure the kids are planning lots of possibilities now!

 

[cantwaittoseemickey]

Thank you! They were both sitting on the couch last night after we got home from Sierra's band concert "discussing" thier plans

 

[rcq925]

Congrats on the Big Give!!

And already got your first present, woo hoo!!!

I am really enjoying reading your PTR!!