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

[jham]

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).

Hey! I was just going to say that! I'll bet you'll go in January or February. That is the only time of year I've ever been and we love it!

 

[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...

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?

LOL about you and Teresa fighting over Becca's Give

Becca cant have blood thinners for two reasons:
1: Her disease forms vascular malformations in the veins, the vein walls are made up of tissue that is not half as strong as artery wall tissue. But the malformation that form have arterial blood pressure not vein blood pressure. If they manage to get past a certain side they are prone to hemorrhage because of the pressure of the blood flowing through them and the tissue thinness.
So people with HHT are not allowed blood thinners.

2: Becca's complication with this disease is that her O2 saturations are very low, it isnt that her lungs dont work properly, its that her lungs are full of these malformations that direct the blood passing through them right back into the heart without being oxygenated or filtered. Kinda like she is having the same effect of having a really big hole in her heart and her blood bypasses the lungs.
Because her O2 sats are so low her bone marrow is working overtime making more red blood cells to try and carry more red blood into the bits of her lungs that has normal tissue. These bloods cells are in themselves really large too. They are like over blown up balloons and the doctors have real trouble now trying to test her count because they rupture very easily.
Her red blood count is now 20.3 and it is supposed to be around 13. An adult woman is only supposed to have in-between 16 and 17 and an adult man around 18.

If they thin it or do a phlebotomy (draw blood) it would be really detrimental to her O2 saturations. Her body is making the red bloods cells to give her more oxygen and if the cells get taken away she will most likely suffer greatly with nausea, headaches and even great fatigue than at present.


We went to see the neurologist today and he has prescribed some seizure medicine for her migraines. I think he said the dose for people suffering from seizures was 200mg 2 times per day, Becca is to take 25mg 2 times per day. We have to go back in January to see if the meds have made any difference to her migraines and the severity of them.

Tired now……We set off at 10.30am and have just got back through the door at 7.15pm. Just for a 45 minute consult….

Going to go and Veg out in front of the

Mandy

 

[mom2lilnick]

I am glad they are going to try something for her. Is it topamax by any chance? I am on that for migraines and take 50mg 2x day.

 

[llurgy]

I am glad they are going to try something for her. Is it topamax by any chance? I am on that for migraines and take 50mg 2x day.

Yes it is!! Clever you

She has to take 25mg once a day for 15 days and then 25mg twice a day.
Does it work?
(ignore the does it work question, I know different meds work differently on people, but I couldnt resist asking )

 

[llurgy]

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).

Hey! I was just going to say that! I'll bet you'll go in January or February. That is the only time of year I've ever been and we love it!

We are hoping to get there in January/February time. We are quite open to whatever dates MAW comes up with but feel that November wont give us time to prepare, December is pushing the envelope too. March, it starts getting a tad warm again so January or February would be good. February would be ideal if it meant we could meet up with some DISers and

Mandy

 

[llurgy]

Hey! I was just going to say that! I'll bet you'll go in January or February. That is the only time of year I've ever been and we love it!

Jeanne,
Just read your one day whirlwind trip report, it was brilliant and the photo's so good.
I hope you get Jaydens meds sorted and that Jack Skelly custom is awesome.

I love the customs.....I think my favorites so far are Teresa's Animal Kingdom twirly skirt outfit and your Skelly outfit.
I think loads of others are really cute but I am afraid I am like Becca in not really enjoying the Princess stuff so much.....Becca and I feel that Princesses are beautiful, they wear beautiful clothes but have no substance too them...dont shoot us but we think princesses are just MEH.

Now give us a Skelly or an Eyeore...... We luvs Eyeore

Mandy

 

[Donald is #1]

Hi! Just found your pre-trip report.

 

[llurgy]

Hi! Just found your pre-trip report.

Hi, Welcome,

Lucky you, you have 2 trips to report!! You must be on

I will have to go read them I luv Trip reports

Mandy

 

[teresajoy]

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...

Mary, you are jus tso sweet!

Being booed, it's just what we call when someone sends you a little jackolantern smiley, it shows they like you! You can then put it in your siggy to show everyone just how popular you are!

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

I think you guys are sweet, and so far you've done nothign to prove me wrong! So there!

Yeah, I didn't want to lose you to anyone else!!!! I'm so selfish!

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

We went to see the neurologist today and he has prescribed some seizure medicine for her migraines. I think he said the dose for people suffering from seizures was 200mg 2 times per day, Becca is to take 25mg 2 times per day. We have to go back in January to see if the meds have made any difference to her migraines and the severity of them.

Tired now……We set off at 10.30am and have just got back through the door at 7.15pm. Just for a 45 minute consult….

Going to go and Veg out in front of the

Mandy

I hope the meds help Becca, and that you guys get your dates and coordinators soon! Are you picking out some outfits yet?? I am excited to see what Becca likes!

I love the customs.....I think my favorites so far are Teresa's Animal Kingdom twirly skirt outfit and your Skelly outfit.
I think loads of others are really cute but I am afraid I am like Becca in not really enjoying the Princess stuff so much.....Becca and I feel that Princesses are beautiful, they wear beautiful clothes but have no substance too them...dont shoot us but we think princesses are just MEH.

Now give us a Skelly or an Eyeore...... We luvs Eyeore

Mandy

I love Eeyore too!! He's my favorite character! We can work around the princess thing! But, the evil side of me does think it would be very funny to make Becca a princess outfit, just to see what she'd say!

Don't worry, I won't!

 

[llurgy]

Mary, you are jus tso sweet!


I hope the meds help Becca, and that you guys get your dates and coordinators soon! Are you picking out some outfits yet?? I am excited to see what Becca likes!

I love Eeyore too!! He's my favorite character! We can work around the princess thing! But, the evil side of me does think it would be very funny to make Becca a princess outfit, just to see what she'd say!

Don't worry, I won't!

I have sent you some pics of what Becca likes......I had to pare them down a tad seeing as she was copying almost the entire album

Becca says that if someone was to make her a Princess outfit she would still love it and wear it because someone had made it just for her.

In the same breath she also said that if someone was to make her a Princess outfit that she hopes it would be yellow/pink and lime green and not blue because she doesn't really like blue dresses

Love
Mandy

 

[maroo]

I have sent you some pics of what Becca likes......I had to pare them down a tad seeing as she was copying almost the entire album

Becca says that if someone was to make her a Princess outfit she would still love it and wear it because someone had made it just for her.

In the same breath she also said that if someone was to make her a Princess outfit that she hopes it would be yellow/pink and lime green and not blue because she doesn't really like blue dresses

Love
Mandy

Oh my gosh...she is SOOOO sweet!

And she sounds like Lauren...so appreciative...but has in her mind what something would look like.

Becca is going to have a great trip...and the Big Give will be a huge treat! Like icing on the cake... or maybe more like a whole separate PARTY! With cake AND ice cream! (in case you don't know...I really like ice cream!)

 

[llurgy]

Oh my gosh...she is SOOOO sweet!

And she sounds like Lauren...so appreciative...but has in her mind what something would look like.

Becca is going to have a great trip...and the Big Give will be a huge treat! Like icing on the cake... or maybe more like a whole separate PARTY! With cake AND ice cream! (in case you don't know...I really like ice cream!)

Becca is a sweetheart (even though I say so myself) She has gotten pressies for Christmas and Birthdays which I know for a fact she had no interest in before the event. After receiving them she has said thank you and then gone on to playing with/wearing them as if they are her favorite things.
The only things she has never gotten into are Dolls......she strips off their clothes and puts them on her cuddly toys. The dolls end up nekkid in her toy chest never to see the light of day again.
Her figuring is that SOME of the present is still being loved on

Mandy

 

[mom2lilnick]

Becca sounds like such a sweetheart! I am glad she is so excited about her wish and all the goodies that will come with it!

 

[TwistofLemon]

Hi Mandy
Thanks for sharing your pre-TR! You and I share the same taste...I have a DD Rebecca, we call her Becky. But she's all grown up. Anyway, lucky you having the Disboutiquers choosing Becca for a Give! I lurk over there all the time, so much talent. I've subscribed to your report, I don't want to miss your updates!

 

[llurgy]

Hi Mandy
Thanks for sharing your pre-TR! You and I share the same taste...I have a DD Rebecca, we call her Becky. But she's all grown up. Anyway, lucky you having the Disboutiquers choosing Becca for a Give! I lurk over there all the time, so much talent. I've subscribed to your report, I don't want to miss your updates!

Welcome TwistofLemon,

I know arent they talented? I have been on the Disboutiquers thread (before Becca getting chosen for a Big Give, not now) They make some really awesome stuff!!
All this MAW and the Big Give really give my family the warm fuzzies inside.
Most of the time in our lives we dont see that there are a whole lot of kind and generous people out there just waiting to be nice to someone and in most cases actively searching those someones out.
My family feels so privileged to be a part of this, it is really just like a dream come true! Dreams coming true generally happen to other lucky people, not to us
Yes, Becca is sick and she misses out on a lot of things (as I am sure all of the other MAW kids do) but she would still be sick and missing out without a WISH on the horizon.
For Becca, DREAMS DO COME TRUE
Her dream is coming true purely because of the generosity of other people, people who dont even know us but are happy to GIVE to us
Thanks MAW.
Thanks especially to the Disboutiquers whom all do this just because of who they are......Beautiful on the inside and outside.

Whoops, sorry!!
As you may be able to tell I still havent gotten over the fact that people whom we dont know want to do such wonderful things for people whom they dont know.......It still chokes me up

Mandy

 

[llurgy]

We received our initial correspondence from MAW today and this evening one of our MAW volunteers phoned to arrange a time to come and see Becca for the first time!!
They are coming on Monday at 8am

We are not early birds as far as getting out of bed in a morning but we will make an exception for this special event

The evenings were booked up for over a week and hubby can go into work late on Monday so 8am it is

We have been told that Becca has to have 3 wishes on hand for if the first wish is not possible.....so......her wishes are.....

Walt Disney World Florida
DisneyLand California
Disneyland Paris


Me thinks she wants to go to Disney

Roll on Monday!!!!!

Mandy

 

[tinytreasures]

Found your pre trip report today

we had the wish granters come out last week it was so much fun the kids loved it
if we get the same dates as you my 9 yr old dd would love a new friend

 

[jham]

We received our initial correspondence from MAW today and this evening one of our MAW volunteers phoned to arrange a time to come and see Becca for the first time!!
They are coming on Monday at 8am

We are not early birds as far as getting out of bed in a morning but we will make an exception for this special event

The evenings were booked up for over a week and hubby can go into work late on Monday so 8am it is

We have been told that Becca has to have 3 wishes on hand for if the first wish is not possible.....so......her wishes are.....

Walt Disney World Florida
DisneyLand California
Disneyland Paris


Me thinks she wants to go to Disney

Roll on Monday!!!!!

Mandy

Love those wishes! She is a girl after my own heart...except for the princess thing

 

[llurgy]

Found your pre trip report today

we had the wish granters come out last week it was so much fun the kids loved it
if we get the same dates as you my 9 yr old dd would love a new friend

What dates are you planning?
We are too late for 2008 now so ours is going to be sometime in the New Year (I hope), January or February hopefully

Mandy

 

[llurgy]

Love those wishes! She is a girl after my own heart...except for the princess thing

LOL .....Well there is no accounting for taste

Her other alternate wish is for a "horse complete with stable and food and a groomer because(***) mummy cant groom it seeing as she is 'llergic"