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Old 10-23-2008, 11:12 AM   #31
teresajoy
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Originally Posted by llurgy View Post
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!!!
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Old 10-23-2008, 11:41 AM   #32
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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.
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Old 10-23-2008, 11:51 AM   #33
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YAY! on the big give, those ladies are AWESOME!! I can't wait to hear/see more. No word yet on dates?
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Old 10-23-2008, 12:44 PM   #34
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Quote:
Originally Posted by llurgy View Post
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!
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Old 10-23-2008, 06:14 PM   #35
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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)
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Old 10-23-2008, 09:47 PM   #36
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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
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Old 10-23-2008, 10:16 PM   #37
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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...
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Old 10-23-2008, 10:51 PM   #38
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Quote:
Originally Posted by maroo View Post
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
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Old 10-23-2008, 10:53 PM   #39
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Originally Posted by llurgy View Post
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.
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Old 10-24-2008, 07:52 AM   #40
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Quote:
Originally Posted by llurgy View Post
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?
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Old 10-24-2008, 11:51 AM   #41
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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!
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Old 10-24-2008, 07:30 PM   #42
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Quote:
Originally Posted by maroo View Post
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...
Quote:
Originally Posted by HeatherSue View Post
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
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Old 10-24-2008, 07:49 PM   #43
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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.
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Old 10-24-2008, 08:00 PM   #44
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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 )
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Old 10-24-2008, 08:20 PM   #45
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Originally Posted by HeatherSue View Post
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).
Quote:
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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
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