Prescott's Make a Wish Trip!!!

[nuts4wdw]

OK, so I have made a fantastic looking imaginary itinerary. It is imaginary because we don't know dates, but I cant help but plan. Prescott doesn't understand this waiting business. He grabbed my hand the other day and wanted to "go" when we were talking about disney and riding the airplane. I guess we are going to Universal and not Legoland. Prescott doesn't really care and his brothers voted 2 to 1 to go to Universal. So, now to read up on it. I am excited to see the Star Wars dates. We requested May 31st through June 9th (including our extension which was approved). So if we get our dates, it looks like it works with Star Wars weekend. Fun, Fun, Fun! As for reality, I spent all morning on the phone with insurance companies and doctors. We have a dr. appt marathon scheduled in a couple of weeks at our closest children's hospital (2 hours away). So, we will have more info then. We are starting to get the bills from Prescott's Mayo Clinic visit in October. So, far without insurance it is over 66K!!!! Hoping that insurance covers it, and covers it good! My mom was supposed to go with me to help to my appt. marathon, but her dad (my grandfather) just got out of the hospital, so I am hoping and praying that she is still able to go. Sometimes things get a little crazy and it is nice to remember what we get to go and do in June and forget all that medical stuff for a week.

 

[OhanaDreams]

OK, so I have made a fantastic looking imaginary itinerary. It is imaginary because we don't know dates, but I cant help but plan. Prescott doesn't understand this waiting business. He grabbed my hand the other day and wanted to "go" when we were talking about disney and riding the airplane. I guess we are going to Universal and not Legoland. Prescott doesn't really care and his brothers voted 2 to 1 to go to Universal. So, now to read up on it. I am excited to see the Star Wars dates. We requested May 31st through June 9th (including our extension which was approved). So if we get our dates, it looks like it works with Star Wars weekend. Fun, Fun, Fun! As for reality, I spent all morning on the phone with insurance companies and doctors. We have a dr. appt marathon scheduled in a couple of weeks at our closest children's hospital (2 hours away). So, we will have more info then. We are starting to get the bills from Prescott's Mayo Clinic visit in October. So, far without insurance it is over 66K!!!! Hoping that insurance covers it, and covers it good! My mom was supposed to go with me to help to my appt. marathon, but her dad (my grandfather) just got out of the hospital, so I am hoping and praying that she is still able to go. Sometimes things get a little crazy and it is nice to remember what we get to go and do in June and forget all that medical stuff for a week.

Woohoo for Universal. We are squeezing in as much as possible too.

Sorry about the Mayo bills. Bills bills bills. At least it was on last years taxes. Hopefully a nice big tax return should help out.

 

[nuts4wdw]

Woohoo for Universal. We are squeezing in as much as possible too.

Sorry about the Mayo bills. Bills bills bills. At least it was on last years taxes. Hopefully a nice big tax return should help out.

You are getting so close! How exciting!!!

 

[kellyw8863]

Congrats on Prescott's Wish from a mom to a former Wish Tripper I don't get on here that much any more, but just wanted to say hello, as my daughter seems to have many of the same issues as your little guy. Good luck with your planning - enjoy it all!

 

[angel's momma]

Glad your planning is going well, hope you get dates soon. Sorry about all of the bills, and having to deal with insurance - praying it all works out. Praying for the upcoming appt. marathon.

 

[nuts4wdw]

Congrats on Prescott's Wish from a mom to a former Wish Tripper I don't get on here that much any more, but just wanted to say hello, as my daughter seems to have many of the same issues as your little guy. Good luck with your planning - enjoy it all!

I just went and read your trip report, it was amazing! Love all the details and pics. Your little wish tripper looks A LOT like my little wish tripper. I agree, they do share a lot of the same issues. It is such a roller coaster at times. We have not received the "official" mito diagnosis yet, but all of his doctors are leaning towards it, and feel pretty confident that he does have it. We are currently in the middle of extensive testing through the Mayo. Hoping for some answers cause we need to know what the heck is going on. However, in the mean time, we can dream Disney! Prescott watches youtube videos of the Magic Kingdom train as he goes to sleep each night and Mickey Mouse Clubhouse plays on the TV all day.Thank you for stopping by.

 

[angel's momma]

Hope you can some answers soon.

 

[nuts4wdw]

As we sit here in a winter wonderland, I am so wanting to feel some Florida warmth. Prescott is still watching Mickey Mouse and trains with gusto. He has added a new "want" he wants to see Captain Hook. So, excited for him to see the characters. He loves the Disney character more than any of my other boys. I am thinking about an autograph book and what I want to do. I don't have much time between work, therapy, and dr. appts. I know he would love to bring the autographs back, perhaps with pictures, and look at them. We will see. Prescott has been doing OK, not super and not bad. We found out he will be going into the hospital in the next couple of months for a couple more procedures. Hopefully, they will be outpatient. We also have our appointment marathon scheduled for next Thursday and Friday. As I wrote on the Make a Wish thread, I am worrying about dates and a dr. appt. One of Prescott's dr.'s is super hard to get into, even for a recheck. She has scheduled Prescott for June 14th. However, we requested the dates 5/31-6/9 for our MAW trip. I don't know how close to the dates most families get. Just something to think about, I guess. Anyway, that is us. Just keep swimming, just keep swimming.....

 

[angel's momma]

I hope he gets to see Capt. Hook. An easy way to do an autograph book is to get the larger index cards (can even get colors) for the characters to sign (will need a small clip board for them to sign on), and then use a small photo album to put the autographed card next to the photo of Prescott with that character, then he can look through them easily.

Glad Prescott has been ok, but hoping you'll be able to say he's doing super. Praying for the upcoming procedures & appts. I hope everything works out with your dates & getting the Dr. approval.

 

[nuts4wdw]

No new news as far as our trip. It has been sooooo cold here that I can't wait to go and be HOT! Prescott is doing well. He is looking at another surgery/procedure in the next month. But otherwise just waiting. He started playing with Star Wars action figures, which made me terribly excited to go to Star Wars weekend. We dvr'ed the Christmas day parade and he loves watching it and pointing to all of his favorite characters. The little nut loves Daisy duck, cracks me up. Anyway, I bought a photo album that hold two photos per page and have decided that since Prescott loves the characters so much I will take pics of him getting autographs and that picture will go into the album on top of the autograph. That way when we get home, we can take it with us to all of our appointments and he will have something to look at. Right now, I am in love with the Disign page and want to print them all, LOL. I can't wait for Prescott to have the time of his life. So, I think I will go crank the heat up in the meantime.

 

[angel's momma]

It's cold here too. Glad he's doing well. Have fun working on his autograph book.

 

[nuts4wdw]

As I sit in the hospital with Prescott. I am feeling especially blessed to hold my little boy and look forward to the fun times ahead. Many people think that MAW trips are only a week long, but they are so much more than that. Two days ago when Prescott was waking up from anesthesia hurting and scared. I was able to whisper in his ear about going to see Mickey and riding the train. He stopped crying because he had something to look forward to and to think about. It didn't alleviate the fear or pain, but momentarily, he was able to focus on something else. That is the power of a wish! I just wanted to share cause I think that that is such a important message. So, now on my end, I am ready to be discharged as we had to stay longer than what was expected due to some complications. So, wish us luck and some dates!

 

[Rx774]

Good morning.
I am happy that Prescott was finally approved for MAW. Sometimes the process can be quite an ordeal, depending upon the relative health of your child. When i read stories like yours, meaning the initial intro do the boards, i wonder you do it. I wonder how any of us do it. Dealing with so many medical obstacles that concern your children.

But anyway, i am happy for your family, and i know you guys can't wait till June. We just got word back that our 2nd MAW child (long story) trip was booked. So she is looking forward to that.

 

[angel's momma]

As I sit in the hospital with Prescott. I am feeling especially blessed to hold my little boy and look forward to the fun times ahead. Many people think that MAW trips are only a week long, but they are so much more than that. Two days ago when Prescott was waking up from anesthesia hurting and scared. I was able to whisper in his ear about going to see Mickey and riding the train. He stopped crying because he had something to look forward to and to think about. It didn't alleviate the fear or pain, but momentarily, he was able to focus on something else. That is the power of a wish! I just wanted to share cause I think that that is such a important message. So, now on my end, I am ready to be discharged as we had to stay longer than what was expected due to some complications. So, wish us luck and some dates!

Sorry there were complications. Praying for Prescott, and hoping you are home very soon & get your dates too.

 

[nuts4wdw]

Well, I called our wish granters to check progress for dates. We are trying to set up appointments for out of town and the doctors are booked 6 to 8 months out and one of our appointments has been scheduled for June 14th. So, I am panicking that we may have to reschedule if we don't get the first week of June. I know others have already gotten their dates for the 1st part of June. So the granters said that they would call me this week with dates. Hopefully, I will have some fantastic news this week! How does it work? Do they just call with dates or do they say, "we have these dates for you, will that work" or.... Holy cow, I am excited!!!!!

 

[Somer]

Hi, your boys are all so handsome! I think they'll like universal much more than legoland. Congratulations on the wish, it is a heartwarming experience.
My daughter also has selective IgA deficiency so I understand the difficulty of the chronic infections!
I'm subscribing. Hope u get your dates soon!

 

[angel's momma]

Hope you get the dates you want, and that you find out very soon

 

[nuts4wdw]

We got our dates!!! It is so real! Our dates will be 5/31-6/6 at GKTW and then we are extending and flying home 6/9. I can't wait for Prescott to have one week full of fun and family time where we are all together. Now let the serious planning commence!

 

[angel's momma]

Yay for the dates!

Are you home?

 

[Lilfoot93]

Yay for dates!!

Jackie