Gloria Joy's premature (??) WDW MAW PTR

[Mom2mitokids]

Kris, I totally get this! We will not be extending our stay, but still cannot imagine spending this much on one dinner!

Yeah...I think of all the things we can do with $300. I know it'll be a memorable experience, but Wow!! We didn't do it last time and Korissa really doesn't want to do it anyways. She would rather spend all her time on the rides. I even asked her if she wanted to do the BBB, but said no. So while they are doing the fast rides...I will take Kylee and do it. I only have one more little one that is willing to do it. We already said...we are going to do 1 big thing for each of the kids. The 3 older girls wants to do the pick a pearl at Epcot..Japan. They can either pick out a ring or necklace to put the pearl in. Kylee is BBB( the middle package..we have someone making her a Cinderella dress for her) and Steven wants to do the Ridemakers. They all(will minus Kylee) understands that if we want to stay 3 extra days than we need to watch our money. I know how much extra spending money we had last time, but not sure if we will get the same.

 

[Glo's wish]

Yeah...I think of all the things we can do with $300. I know it'll be a memorable experience, but Wow!! We didn't do it last time and Korissa really doesn't want to do it anyways. She would rather spend all her time on the rides. I even asked her if she wanted to do the BBB, but said no. So while they are doing the fast rides...I will take Kylee and do it. I only have one more little one that is willing to do it. We already said...we are going to do 1 big thing for each of the kids. The 3 older girls wants to do the pick a pearl at Epcot..Japan. They can either pick out a ring or necklace to put the pearl in. Kylee is BBB( the middle package..we have someone making her a Cinderella dress for her) and Steven wants to do the Ridemakers. They all(will minus Kylee) understands that if we want to stay 3 extra days than we need to watch our money. I know how much extra spending money we had last time, but not sure if we will get the same.

Ya, any ADR's ect.. that I make is a leap of faith that the expense check will cover it. Either way it will be a week of fun that I could never give my kids on my own. It will be wonderful even if we eat PB&J the whole time.
That's great that you will be able to extend your stay and do something special with each kid. Pick a pearl sounds fun too!

 

[J'sMum]

Ya, any ADR's ect.. that I make is a leap of faith that the expense check will cover it. Either way it will be a week of fun that I could never give my kids on my own. It will be wonderful even if we eat PB&J the whole time.
That's great that you will be able to extend your stay and do something special with each kid. Pick a pearl sounds fun too!

Well said and I agree ! we have not set up any ADR's and i kno wmy kiddos will not feel as though they have missed out. like you there is no way at all we would have ever been able to consider a trip of this magnitude shoot even a trip 1 state away as a day trip is undoable LOL so we like you are very grateful for this opportunity

 

[hgpiglet]

You have very cute kids, although I'm sure your boys would not appreciate being called cute . I just noticed the Doxie in your other pictures. I'm a Doxie lover myself, had them the whole time I was growing up, and have desperatly wanted another since I've been married so when I was struggling with infertility for the second time we adopted a 1/2 doxie 1/2 mini pincher, his personality is all Doxie and he looks like a Doxie with just a bit longer legs.

 

[Glo's wish]

You have very cute kids, although I'm sure your boys would not appreciate being called cute . I just noticed the Doxie in your other pictures. I'm a Doxie lover myself, had them the whole time I was growing up, and have desperatly wanted another since I've been married so when I was struggling with infertility for the second time we adopted a 1/2 doxie 1/2 mini pincher, his personality is all Doxie and he looks like a Doxie with just a bit longer legs.

Thanks! We LOVE our dog!! She is new to us (July) and all though it's been a little trying (she was a "kennel" dog/baby making machine) before we got her and has never had a need to be house trained before now. I have to say she is the most affectionate ad timid dog I have ever met! She stole our hearts right away!
Thanks for stopping by!!

 

[visitingapril09]

Thank you for visiting my PTR!! I am over hear to read all about your trip. Subbing here!

 

[Glo's wish]

Thank you for visiting my PTR!! I am over hear to read all about your trip. Subbing here!

Thanks for stopping in Alison! Things have definately stalled on our end. We were told to expect a call last week to go over things but still haven't heard from anyone. This is a good exercise in patience!!! I am enjoying reading every one else's PTR's and TR's!

 

[Glo's wish]

Sorry I haven't updated much, 3 of the 4 kids are sick and it's been very hectic. Two of my boy have bronchitis with sinus infections that I was praying Gloria wouldn't get but it's not looking too hopeful. Gloria is still struggling with being overly tired and nauseated whenever we start her feeds. We thought it was yet another kidney infection-she's had 6 in 7 months!- but th tests came back clean. Next week she is scheduled for a battery of tests-blood work, urine culture, kidney/bladder ultrasound, and on Friday of next week she will get general sedation and have an MRI done of her brain, neck, and spine. Glo's nuerosurgeon thinks it's possible that the spinal cord surgery she had a year ago caused changes in her bladder resulting in the multiple kidney infections. Either that or we know she has a small cyst in her spinal column that he thinks may have grown and is now pressing more on her spinal cord causing changes in her bladder, as well as back and foot pain.
I'm praying that her cough and nasal congestion does not get any worse so that the sedation team will allow the MRI to happen!

I'd like to send a big thank you to Linda for the postcards!! The kids LOVED them! My 17 yr old told me out of the blue 2 nights ago that he thought the crocidile postcard was pretty cool! That's saying alot coming from someone sooo mature! I'll try to post pics after I tuck some kids in.

 

[Glo's wish]

 

[Glo's wish]

 

[Glo's wish]

I cant believe I almost forgot to say that our MAW volunteers will be here tomorrow night to get things started! Yay!!!

 

[wishin' on a star]

I'm so excited for you guys...can't wait to hear how the meeting with the wish granters goes!! I hope you get things straightened out with Glo...hope she isn't coming down with sinus junk, and hope you can figure out what is going on with her kidneys/bladder. My Catherine just had an MRI today under general anesthesia...ugh, the things these kids have to go through.

 

[Haybuggsmom]

I'm following along!!
Are they letting your son go.
My 20 year old went but he is older and DH in deployed!!
WAITING FOR NEWS and hoping everyone is feeling better!

 

[Glo's wish]

I'm following along!!
Are they letting your son go.
My 20 year old went but he is older and DH in deployed!!
WAITING FOR NEWS and hoping everyone is feeling better!

I may not have an answer to this for 6 + weeks. Our volunteers told me that our wish coordinator may not contact us until another 6 weeks. Apparently MI has a back log of wish kids and with our economy being in the toilet things are slow going. They were not optimistic that we could go before March (which might be too soon) otherwise we would need to skip hot months and wait until Sept or Oct.

I'm so excited for you guys...can't wait to hear how the meeting with the wish granters goes!! I hope you get things straightened out with Glo...hope she isn't coming down with sinus junk, and hope you can figure out what is going on with her kidneys/bladder. My Catherine just had an MRI today under general anesthesia...ugh, the things these kids have to go through.

Yes, these kids are definately troopers! I cant imagine being as spunky as Glo is if I had to endure 33 surgeries in 6 years! She puts me to shame if I even have a cold. The docs checked her urine again yesterday but it still looks ok. She has been getting incredibly nauseated and extremely tired anytime we start her feeds-even just Gatorade. He has been sleeping an average of 13 hrs a day. Yesterday she slept almost 16 hrs! She still is acting drained, not at all her usual perky self.

 

[Mom2mitokids]

So did your MAW volunteers come out yet?

 

[Glo's wish]

OOPS! I could have sworn I updated about the volunteers. Anyway, Glo officially made her wish. The wonderful volunteers said it shouldn't be a problem at all, but will take a while. Apparently Michigan has over 500 kids waiting for wishes?? Add to that the fact that we have only 3 wish coordinators and there is quite a back log. They said we MIGHT be able to go in March, if not Sept or Oct 2011 to avoid the hot months. Still no idea if my soon to be 18 yr old will be covered, but Glo's teacher emailed me saying one way or another the school will make sure he is covered! We have been blessed so many times by the wonderful people God has placed in our lives! We should hear from the coordinator in about 6 weeks as to who is covered and when we should be able to go. I'm trying to calm my excitement a bit or else it will be an eternity until nex Oct rolls around!

 

[Glo's wish]

So did your MAW volunteers come out yet?

Sorry I didn't realize I hadn't updated! With 3 sick kids my mind tends to wander!
We did meet with our wonderful volunteers. They were so great with Gloria and even brought her a BEAUTIFUL hand painted wish box to keep as a keepsake! Glo made her wish official and it went well considering she wasn't feeling well at all.
Thanks for checking in, I have been so caught up in others PTRs and cant wait until I can start making some real plans!!

 

[HeatherSue]

Hi! I'm just checking in with you to see if you have your dates yet and to see how things are going.

I didn't know Michigan had so many wish kids waiting. I live in Michigan, about 1 1/2 hours from you!

 

[blessedmom4]

Hi Jeanie, I am checking in to see how things are going...we had to postpone our trip as well and I am feeling a bit blue as the days seem to be far too full of medical stuff and not nearly enough fun! Please let us know how things are going when you have time.

 

[brookerene]

hope things are going well...