Becca's Wish Trip........Update:September 2011.....Photo's....Sorta :)

[llurgy]

The soto of a trip report is a TR, but not the one with 1900 Park Fare, that one is the purple "Diser Sistas" button. But, you can read both if you want. The first one is only one page long.

I have read your sort of trip report and from then gotten dragged into reading of your babies in heaven

I have just started to read your Sista's TR and I am planning to read yours and Heathers at the same time.....LOL.....I am going to be Boz-eyed by the time I am done.

Thanks for the Dining info and link, I have them bookmarked now

Mandy

 

[llurgy]

Just found your PTR and I am loving it! Becca is an amazing girl! We will be at GKTW Jan 19 to 25, I have a 12 year old daughter too and I know that she would love to be Becca's friend! Maybe we will luck out and be there at the same time.

Oh goodie, another TR to read, I will get around to it honestly, I love reading TR's and I have been avidly devouring them since landing on these boards a few weeks ago.
The only trouble is with reading so many in such a short time is that I am starting to get mixed up with who is going when and whom belongs to which trip. My mind is a turmoil....LOL!

It would be neat if our girls managed to meet up, fingers crossed.
Becca is more excited about maybe meeting other kids at the village than she is about Disney I think and she is really excited about Disney!!!

Mandy

 

[HeatherSue]

You went and tricked me into reading your PTR by posting on MY TR!

You seem like such a nice family and I can't wait to read more about you guys!

Like my sister said, there's no such thing as too much information on your PTR! It's your TR and you get to write whatever you want!

I bet you can't wait to find out your dates!

 

[llurgy]

You went and tricked me into reading your PTR by posting on MY TR!

You seem like such a nice family and I can't wait to read more about you guys!

Like my sister said, there's no such thing as too much information on your PTR! It's your TR and you get to write whatever you want!

I bet you can't wait to find out your dates!

I'm sorry, I didnt mean to trick you.

I have been reading about your family for the past 72 hours and I feel like I have known you all forever.
Why are you posting on my thread and not updating yours?? Joking....lol....but really, time is a ticking away

Oh, I forgot to say on your trip report, my DH is not so much of a Disney lover either, he is not a hater like Henry but he prefers all of the baddie cartoonies and says Disney ones are all too goody two-shoes and blah.

I look in the mail everyday but no package yet, but then it has only been one week since we found out Becca qualified for a wish and only two weeks since I approached them initially. I will be patient.....I will be patient....I WILL be patient

Mandy

 

[teresajoy]

I have read your sort of trip report and from then gotten dragged into reading of your babies in heaven

I have just started to read your Sista's TR and I am planning to read yours and Heathers at the same time.....LOL.....I am going to be Boz-eyed by the time I am done.

Thanks for the Dining info and link, I have them bookmarked now

Mandy

I'm sorry, I didnt mean to trick you.

I have been reading about your family for the past 72 hours and I feel like I have known you all forever.
Why are you posting on my thread and not updating yours?? Joking....lol....but really, time is a ticking away

Oh, I forgot to say on your trip report, my DH is not so much of a Disney lover either, he is not a hater like Henry but he prefers all of the baddie cartoonies and says Disney ones are all too goody two-shoes and blah.

I look in the mail everyday but no package yet, but then it has only been one week since we found out Becca qualified for a wish and only two weeks since I approached them initially. I will be patient.....I will be patient....I WILL be patient

Mandy

Oh, what a sweet thing to say! Really though, it takes 72 hours to read our trip reports?

I can't wait for you to get your dates either!

 

[maroo]

Oh my gosh!! Another Wish Trip!! FUN! (How did I miss this?)... I think I need to get my nose out of our TR and read some others!!!

Ok...now I have to go back and actually READ this one...

**runs away to read**

 

[maroo]

Question:

Has anyone on a Make-A-Wish trip not gone to their destination via plane?

I have read loads of trip reports and it seems that everyone has flown to their trip destination.
We have been told that to make sure that Becca can cope with the cabin pressure she would have to be tested in an anearobaric chamber first. We would also have to have oxygen on the plane and once we got there. Because of this we were going to drive and in fact driving is preferable so we dont have to think about what may happen.

So, has anyone driven the Make-A-Wish journey?
We live in Ohio so I am talking about around a 1000 miles.

Mandy

I drove the van on our trip from Jackson, MS. It was about an 11 hour drive for us. I think it would be longer for you, but I would bet that your MAW chapter would provide lodging on the way there and on the way back. So you could have THAT much LONGER to enjoy your trip!! And if you are homeschooling, then she won't miss anything!!

I am sorry to hear of all of your struggles. I will keep reading...have not gotten far...but that is my 10 cents for now.

 

[maroo]

I thought we had better introduce ourselves

This is my Darling Hubbie David (47 years old) and Myself (44 years old)

The is the Star of the show and our small family, Becca (12 years old)

Becca at Cabela's posing in a Davy Crockett hat

We have a Baby Jogger Stroller for walking on trails and such. Becca cant do a lot of walking and we were becoming really "un-fit" as a result of it so we invested in the stroller so we could enjoy the great outdoors once again. It enables Becca to do the bit of walking she can do and gives her somewhere to collapse when done...LOL.
Becca and Daddy

Becca pretending she had walked to the 4 mile post marker

Me not pretending

So thats our little family. We moved over to the States from England in 1999 so we haven't any family over here, consequently we are very close. This will be the first vacation we have been on since landing in the states all those years ago. The plan was to visit England every couple of years but because of Becca's illness we only managed to go back once in 2000. We miss family from home but are grateful that DH's Mum comes over once a year to visit.

Mandy

Ok...my last post of the night, I promise!! But I did this all out of order!!
Your family is simply beautiful! I can't wait to see when you guys end up going...

You guys will have a blast.

We got LOTS of advice from lots of folks (DISboards and others)...and one thing we learned was that we needed to things that we were interested in and not do stuff just because everyone else is doing it. If you are pretty sure Becca won't like something...or wants to do something different...then go with it.

And...the other thing I learned...is that you can't do everything. Even the magic button (bypasses most lines) may not allow you to do more because WISH kids tend to need to rest more, too.

anyway...enough from me!!!! I can't wait to read more!!

 

[llurgy]

Hi Maroo
Hi, nice to see you here, I haven't written much yet but I thought I should start the PTR as otherwise I would forget and start after everything had happened. This way I can write things as they actually happen.
So.....Not much news as yet but the most important news to us was that Becca DID qualify for a wish from the M-A-W foundation, all of the dates and planning are secondary to that miracle.

We know we will only be able to do very little in the parks but getting the magic button makes a big, big difference. In one visit it could be the difference between Becca going on 2 rides instead of waiting for 20 minutes and only having enough energy to go on only one ride. On a good day she could finish up going on lots of rides. It all depends on whether or not the dreaded headaches make an appearance. She gets ill with the headaches and we have to stop/drop and roll to somewhere where she can just have peace and quiet and rest.
These headaches can happen just on a visit to Wally's World or the Mall. Other times if she has the adrenaline going they can happen when the adrenaline stops, its like her body goes past its limits when excited and then crashes when the excitement has passed.
She has been known to get ill just visiting good friends whom we haven't seen for ages. She looks forward to it so much, then we get there and she get migraine and gets sick. A half a hour nap later and she is fine again.

The headaches are due to her low oxygen sats. They cant fix the problem that causes the low oxygen.
On Friday we are off on an introductory visit to Dublin Ohio (2 hours away) to have an initial visit with a Neurologist. It is going to be his job to try and treat her headaches without being able to treat the cause of the headaches (poor man, it is going to be a dilemma for him me thinks).

I have read your PTR I think, you're the one that had to take the wheelchair for your 'charge' in the van whilst everyone else flew on the plane aren't you?

I didn't realize you had made a TR too. I will have to read it tomorrow. Early beddie-byes time tonight because I have to go to the dentist early tomorrow morning Me don't like dentist, me scared

Mandy

 

[llurgy]

I am a bit overwhelmed at the moment.
I found out yesterday but was so amazed about it and had questions that I am only just writing about it now after asking permission to make sure I was allowed to of course .

Yesterday we received a PM telling us that Becca was going to be part of the BIG GIVE

The so,so very kind and generous people over on the Dis-boutique part of the board are going to be making some custom clothes for our Becca to wear when she has her WISH trip to WDW!!! I mean, how awesome is that??
Not only is she getting her wish, but on top of that she is going to have some cool togs to wear too?

Overwhelmed is now a common word in our house. DH is stoked!
Becca still doesn't know, saving it for a little while until we can give the announcement of 'custom clothes' the proper amount of time and attention it deserves!

Thanks everyone from the Big Give

Mandy

 

[teresajoy]

I am a bit overwhelmed at the moment.
I found out yesterday but was so amazed about it and had questions that I am only just writing about it now after asking permission to make sure I was allowed to of course .

Yesterday we received a PM telling us that Becca was going to be part of the BIG GIVE

The so,so very kind and generous people over on the Dis-boutique part of the board are going to be making some custom clothes for our Becca to wear when she has her WISH trip to WDW!!! I mean, how awesome is that??
Not only is she getting her wish, but on top of that she is going to have some cool togs to wear too?

Overwhelmed is now a common word in our house. DH is stoked!
Becca still doesn't know, saving it for a little while until we can give the announcement of 'custom clothes' the proper amount of time and attention it deserves!

Thanks everyone from the Big Give

Mandy

You are so welcome Mandy!!!

 

[jham]

Yay for Becca's wish trip! My family loved Ohana and we went for dinner when there were no characters. My DD11 loves character meals and claims Chef Mickey's was her favorite meal of the trip. She is more of a girly-girl though. I have two TRs in my siggy if you want to see a DD10 and DD11 on her trips to Disneyworld and Disneyland.

 

[mom2lilnick]

YAY! on the big give, those ladies are AWESOME!! I can't wait to hear/see more. No word yet on dates?

 

[HeatherSue]

I am a bit overwhelmed at the moment.
I found out yesterday but was so amazed about it and had questions that I am only just writing about it now after asking permission to make sure I was allowed to of course .

Yesterday we received a PM telling us that Becca was going to be part of the BIG GIVE

The so,so very kind and generous people over on the Dis-boutique part of the board are going to be making some custom clothes for our Becca to wear when she has her WISH trip to WDW!!! I mean, how awesome is that??
Not only is she getting her wish, but on top of that she is going to have some cool togs to wear too?

Overwhelmed is now a common word in our house. DH is stoked!
Becca still doesn't know, saving it for a little while until we can give the announcement of 'custom clothes' the proper amount of time and attention it deserves!

Thanks everyone from the Big Give

Mandy

You're so sweet, and you're very welcome.

I think we get just as much out of it as the families do!

 

[llurgy]

It's great snt it??

Trip of a lifetime and new clothes to wear on it.
Becca is so excited!!
DH and I are quite excited too

No dates as yet, in fact we are still waiting to be assigned the people to come round and see us so Becca can officially say her wish and then things should get moving (Fingers crossed)

 

[llurgy]

We are off to see the Neurologist tomorrow.
This is a first vist.....fingers crossed that he can do something about Becca's headaches and subsequent nausea.
She suffers from sudden-onset migraines because her disease has given her polycythemia (lots and lots of red blood cells causing really thick blood).
Because of the thick blood she cant suffer heat very well and is at risk for thrombosis and bloot clots but at present the main complications of her high red blood cell count are these migranes that can develope from zero headache to full blown migraine in the space of a couple of minutes.

We are thinking that the only option the neurologist has is to put her on some daily medication.
We are just hoping that he can do ANYTHING just to improve the quality of her life just a little bit. Any improvement would be better than what she has now.
Wish us luck
Mandy

 

[maroo]

yeah!!!!!! the Big Give!!!!!!!!!!! this was one of the best parts of our whole wish experience!!!! and they let me join! So NOW I get to help!! sweet!!

The coolest Big Give ever! No dates yet and already Big Gived...that should be like being "booed"... what IS that anyway??? Being Boo-ed...? or Boo'd? or whatever? I digress!!

I am so excited for you guys.

And I will pray for Becca's neuro appt. I hope they can help her.

Make sure you guys pick really "cool" temperature dates if she gets overheated easily...

 

[llurgy]

yeah!!!!!! the Big Give!!!!!!!!!!! this was one of the best parts of our whole wish experience!!!! and they let me join! So NOW I get to help!! sweet!!

The coolest Big Give ever! No dates yet and already Big Gived...that should be like being "booed"... what IS that anyway??? Being Boo-ed...? or Boo'd? or whatever? I digress!!

I am so excited for you guys.

And I will pray for Becca's neuro appt. I hope they can help her.

Make sure you guys pick really "cool" temperature dates if she gets overheated easily...

Yeah, we have been Big Give-d without even having a Coordinator....LOL....I cant even fill the form in properly because we dont have the MAW coordinator phone number yet.

LOL....TeresaJoy jumped in first because she wanted to host my big give.....She doesnt know what she has let herself in for, she may regret it

(I had to find the devil from an outside source, couldn't find a devil in the DISboard - DISboard must be too nice to host Devil smilies )



I dunno what boo-ed is either, I did read someone explaining it on another thread but I still didn't understand and now I cant find the thread again to give you the link

When I did talk to the MAW person 2 weeks ago I did mention that we were hoping to go this coming winter because Becca doesn't do at all well in the sun and heat. MAW said that we should be okay with that timeline but it probably wouldnt happen before Christmas. So we have fingers crossed for after the New Year, we would hate to have to wait until next winter (2009 - 2010) as Becca gets more fatigued and less exercise tolerant every passing year.

But.....Becca IS going to DISNEY sometime and that is all that matters

Mandy

 

[mom2lilnick]

We are off to see the Neurologist tomorrow.


We are thinking that the only option the neurologist has is to put her on some daily medication.
We are just hoping that he can do ANYTHING just to improve the quality of her life just a little bit. Any improvement would be better than what she has now.
Wish us luck
Mandy

Good luck at the neuro tomorrow. Kayla (also 12) has epilepsy and severe migraines. She was on daily meds for a few years but has been weaned off them. Hers are so sudden as well that at one time the neuro wanted her to try O2 to see if they helped. He said she had cluster headaches which were not common in females at all, let alone young ones. Thankfully they are better but she still has rescue meds for the bad ones.

Update when you can.

 

[HeatherSue]

Yeah, we have been Big Give-d without even having a Coordinator....LOL....I cant even fill the form in properly because we dont have the MAW coordinator phone number yet.

LOL....TeresaJoy jumped in first because she wanted to host my big give.....She doesnt know what she has let herself in for, she may regret it

(I had to find the devil from an outside source, couldn't find a devil in the DISboard - DISboard must be too nice to host Devil smilies )



I dunno what boo-ed is either, I did read someone explaining it on another thread but I still didn't understand and now I cant find the thread again to give you the link

When I did talk to the MAW person 2 weeks ago I did mention that we were hoping to go this coming winter because Becca doesn't do at all well in the sun and heat. MAW said that we should be okay with that timeline but it probably wouldnt happen before Christmas. So we have fingers crossed for after the New Year, we would hate to have to wait until next winter (2009 - 2010) as Becca gets more fatigued and less exercise tolerant every passing year.

But.....Becca IS going to DISNEY sometime and that is all that matters

Mandy

Teresa was afraid I'd try and take your big give, I think!

I'm hoping you go in February! A bunch of disboutiquers will be there on February 8! (I'll be there from Feb. 3-10).

Are they considering putting Becca on blood thinners?