Mattie's MAW PTR

[MelMel11]

Glad Mattie is getting her wish. Cant wait to hear more.

 

[lawblond7]

We just got back from GKTW last Thursday from my oldest son's MAW trip. One of my twins went on his wish there 9 years ago. All 3 of my boys also have a mitochondrial disease - www.caringbridge.org/visit/claytonandcole (although I have not updated in about 9 months - mainly due to Facebook and taking a break from some of the depressing medical stuff and living in the moment) (FYI the other twin has wished for a Mediterrian Cruise that was just granted and we will most likley go this summer)

As for the heat - that is why we went in January AND for the reason that there were no crowds (plus we had Monday and Tuesday off - and ended up with the Friday we left off too due to snow). The weather was ideal, the crowds small.

Also I do not know if your daughter has an adaptive stroller or wheelchair or if she can walk distances BUT we have found that our convaid cruiser was a must - PLUS we rented a scooter off site also as my older son could drive it.

I hope you get your dates soon.

 

[Shellyplus4]

Glad Mattie is getting her wish. Cant wait to hear more.

Thanks!! We are super excited!

We just got back from GKTW last Thursday from my oldest son's MAW trip. One of my twins went on his wish there 9 years ago. All 3 of my boys also have a mitochondrial disease - www.caringbridge.org/visit/claytonandcole (although I have not updated in about 9 months - mainly due to Facebook and taking a break from some of the depressing medical stuff and living in the moment) (FYI the other twin has wished for a Mediterrian Cruise that was just granted and we will most likley go this summer)

As for the heat - that is why we went in January AND for the reason that there were no crowds (plus we had Monday and Tuesday off - and ended up with the Friday we left off too due to snow). The weather was ideal, the crowds small.

Also I do not know if your daughter has an adaptive stroller or wheelchair or if she can walk distances BUT we have found that our convaid cruiser was a must - PLUS we rented a scooter off site also as my older son could drive it.

I hope you get your dates soon.

Sorry to hear you qualify for so many wishes.... I hope that things get a little better for you all soon. I know it can be frustrating when things just keep rolling in. I take medical update breaks too.. Sometimes you just have to step away for a bit.
Mattie is in and out of her wheelchair. We will bring one for sure. I am thinking about trying to find something that my youngest can sit on too. He is healthy...but only 9. I can see him tiring from walking pretty quickly.

 

[lawblond7]

Thanks!! We are super excited!



Sorry to hear you qualify for so many wishes.... I hope that things get a little better for you all soon. I know it can be frustrating when things just keep rolling in. I take medical update breaks too.. Sometimes you just have to step away for a bit.
Mattie is in and out of her wheelchair. We will bring one for sure. I am thinking about trying to find something that my youngest can sit on too. He is healthy...but only 9. I can see him tiring from walking pretty quickly.

Do not feel sorry that we qualify -- it is the cards I have been dealt - all 3 boys have mito - complex I and IV - and all affective differently - 2 have feeding tubes - with Clay having been tube fed since he was 18 months old and still is at almost 14 and my oldest - he had his placed at 13. Clay also has seizures, etc. Cole has severe migraines requiring preventive meds twice daily plus still breakthrus that require 400 to 600 mg of motrin and he is only 70 pounds.

Yes it was very tiring and this trip it really became clear that I will need to look into getting my oldest a scooter or power chair for distances as he really cannot walk very far.

 

[blessedmom4]

Just wanted to say HI!

 

[Shellyplus4]

We got a letter today with our Wish coordinator info!! Things are moving along. We should be hearing shortly if our doc said the trip was okay. Not a big update, but we are super excited!

 

[brookerene]

Yay....any info is good info!

 

[blessedmom4]

We got a letter today with our Wish coordinator info!! Things are moving along. We should be hearing shortly if our doc said the trip was okay. Not a big update, but we are super excited!

Any news yet???

 

[Shellyplus4]

Any news yet???

Nothing.... I am going stir crazy. I have been going back and forth trying to decide if I should call and check in with them. Hopefully we will hear something soon.

Thanks for checking in on us. I can't wait to have exciting news to post.

 

[tinytreasures]

Nothing.... I am going stir crazy. I have been going back and forth trying to decide if I should call and check in with them. Hopefully we will hear something soon.

Thanks for checking in on us. I can't wait to have exciting news to post.

Hope you hear something soon

 

[blessedmom4]

Nothing.... I am going stir crazy. I have been going back and forth trying to decide if I should call and check in with them. Hopefully we will hear something soon.

Thanks for checking in on us. I can't wait to have exciting news to post.

The start of a new week, I would call...things do get displaced...Just wanted you to know, I am here, waiting for good news when you have it.

 

[billwendy]

Hi! your kids are so cute!!

Have you heard any news YET!!!???!!!???

 

[tinytreasures]

Checking in too

 

[blessedmom4]

Looking for an

 

[blessedmom4]

Just letting you know I stopped by....

 

[Shellyplus4]

I thought I had posted an update earlier... .but I cannot find it! So if this is a duplicate I apologize. We got a call earlier this week and we got our final approval. We are going to Disney!!! We are so excited! They told us we could go as soon as next month. I do think we are going to hold off and try to go when it's cooler between Oct-Dec. I am open to any suggestions as to the best time to go. I went once when I was in elementary school.. so I am totally clueless.

 

[blessedmom4]

I thought I had posted an update earlier... .but I cannot find it! So if this is a duplicate I apologize. We got a call earlier this week and we got our final approval. We are going to Disney!!! We are so excited! They told us we could go as soon as next month. I do think we are going to hold off and try to go when it's cooler between Oct-Dec. I am open to any suggestions as to the best time to go. I went once when I was in elementary school.. so I am totally clueless.

I am SO EXCITED for you!!! My pick would be MAY!!! (We were originally supposed to go in May...). My next pick would be the week AFTER Thanksgiving (low crowds, decorated for Christmas, not too hot) if school calendars aren't a problem...Just my two cents...and

 

[tinytreasures]

 

[Shellyplus4]

Thanks guys! I am getting really excited. They told me we didn't need to pick our date until mid-summer if we are wanting to wait until fall. I am thinking that we will probably shoot for sometime around Thanksgiving.. I hear the week after is great. I am still open to suggestions.

Next week we are heading to Ohio to see a doc. I will be updating her caringbridge for anyone interested.

 

[tinytreasures]