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

[llurgy]

that is s cool you guys get to go together
still waiting for dates here

We were told on Oct 10th that Rebecca qualified for a wish (after our specialist confirmed our referral)
We were told it would take 2 to 4 weeks to be assigned volunteers. Our volunteers came out last Monday and we heard today that Disney World had been approved by MAW subject to Doctors approval and we got our dates at the same time so in all from being approved for a Wish to getting our dates it has been just over 4 weeks - from filling out the referral to present day has been 5 weeks.

Now we have the waiting.........

Mandy

 

[iu97alum]

YEA for the dates!!!!! Now for FULL PLANNING mode right?

 

[llurgy]

YEA for the dates!!!!! Now for FULL PLANNING mode right?

I wish!!!! I asked MAW yesterday when they told us our dates what we had to do and they said nothing!!! How am I ever going to get through a pre-vacation without knowing every detail of what is going on?
Will they plan for her O2 for all of the legs, will the O2 be at the village when we get there? What flights will we be on? What time? The list goes on

One thing we really have to do is get on YouTube and try and find some attraction videos to look at

 

[Khalana]

They'll probably answer some of your questions if you ask them. THey probably just don't want you to have to worry about it not understanding that you will worry until you know ALL the details. Have fun planning and checking out rides.

 

[mom2lilnick]

I would call and ask as well. We were told we would get a bunch of info on Jan 9th.. plane info and so on. That is only 10 days before our trip and that scares me not to know what is going on until then!

 

[jmskinner]

Glad you got your dates and will be able to go same time as others. I couldn't handle someone else doing the planning for me either.

Hope all goes well with the meds also. Hopefully you get it straight before your trip so she can have a great time with no headaches.

 

[maroo]

Becca and Kayla there at the same time...Look out World! How much fun is THAT!!!

I am so excited that you guys got dates!!

Our MAW really wanted us to not plan anything either..."just go and enjoy it"...but I couldn't...We had to plan stuff and I asked a lot of questions...I tried to spread them out, though!

You guys are going to have a blast!!!!!!

 

[llurgy]

Just a quick update:
Becca went to see the Neuro on Tuesday as a follow up after having to take her off the meds she was prescribed due to adverse side effects.
He was concerned that the optic nerves at the back of her eyes were swelling so he rushed us off the the optometrist in the same building to have her eyes dilated and looked at by the specialist. There was no swelling, what he thought was swelling was very congested and tortuous blood vessels. The blood vessels are tortuous because of her very high Red blood cell count, it is over 20 now plus her red blood cells themselves are rather large.
The neuro wanted to make sure as he thought she could have a brain abscess if she had have got a swollen optic nerve.
A brain abscess is very likely in Becca as a lot of her blood doesnt get filtered because it bypasses the lung capillaries...... Whew!!! All clear!!!
The Neuro does however want her to have a MRI and a MRA, I have managed to talk him into letting us get that done locally though....no fun traveling 100 miles when you dont have to.
We just have to wait whilst he consults with our HHT specialist in Yale before scheduling that.

Becca was throwing up last week, 3 morning she did it, we thought it was the meds as it was only first thing in the morning and no other time. We took her off the meds Friday and she stopped throwing up immediately. Until Yesterday. She woke up, threw up twice within 30 minutes and then stopped and was fine again.....fast forward to this morning and repeat.....weird.....she is fine afterwards but it is really puzzling us.
It is like she is pregnant and has morning sickness!!
Now maybe she still had meds in her body, but that wouldnt explain Sat,Sun and Mon being ok.
We dont think it is a bug because she is only nauseous just before she throws up and she is fine afterwards.
We think she is just about to start Puberty (body showing signs) so maybe her hormones are playing havoc.
We are giving it until tomorrow or Friday to see if it stops before taking her to our family doctor.

Now I am going to try to go to sleep.......I did it once tonight so I just know I can do it again

Mandy

 

[eyor44]

Bless your heart. Glad there wasn't a brain abscess (how scary) and here's hoping you will be able to do the tests locally.
And now having to deal with puberty on top of everything else? Poor thing. Well, we all have to go through it. Hopefully she will get over the sickness soon.

 

[mom2lilnick]

oh hugs! I hope she is feeling better soon.

 

[llurgy]

oh hugs! I hope she is feeling better soon.

It was a case of rinse and repeat again today so we are off to the Dr's this afternoon to try and find out what is going on.

One good thing about it is that she doesnt spend a lot of time feeling Pukey, just a few minutes before the actual event and a few minutes after. Of course the bad side of that is that we dont have any warning

Mandy

 

[iu97alum]

It was a case of rinse and repeat again today so we are off to the Dr's this afternoon to try and find out what is going on.

One good thing about it is that she doesnt spend a lot of time feeling Pukey, just a few minutes before the actual event and a few minutes after. Of course the bad side of that is that we dont have any warning

Mandy

Awww... poor thing. Poor you with no warning. That is THE worst

 

[Khalana]

That's no fun! I hope she starts feeling better soon and that you find out what it is. Lydia had a weird bug last winter where she would throw up once or twice a day for a week, but she had no "good" days in between. And I remember throwing up a bit before getting my period, but not that much... Hope you get it all figured out.

 

[llurgy]

It isnt THAT bad, she has enough warning to get to the bathroom as long as we are near the bathroom.

I am one of those terrible mothers that cant stand the sight of anyone throwing-up. I see-I join....I hear-I join.....

Becca, bless her has got so used to me, she knows I am useless until after the fact and shouts to me to get out of the house quick *** she is gonna blow

After she has done she lets me know and thats when I stroke her brow and love her better. I know , I dont feel good about it, but thats the way it is.

Mandy

 

[llurgy]

That's no fun! I hope she starts feeling better soon and that you find out what it is. Lydia had a weird bug last winter where she would throw up once or twice a day for a week, but she had no "good" days in between. And I remember throwing up a bit before getting my period, but not that much... Hope you get it all figured out.

I really think that it is a puberty issue, we keep telling her she has morning sickness
Her blood chemistry is so out of whack because of her Oxygen dificiency that it just wouldnt surprise me in the slightest. Her blood is too thick, she has too much of it, it is very sluggish and her heart always has to pump hard. Her kidneys work overtime because they have to clear out more dead red blood cells (she makes more so more die), she is hypoglycemic......
She doesnt however have high blood pressure or hypertension

 

[maroo]

Bless her heart!! And yours!!

It does sound so strange. Lauren does that sometimes, but it is usually when she got up too early or one of us made her eat breakfast too early in the AM. (shame on us!)

It isnt THAT bad, she has enough warning to get to the bathroom as long as we are near the bathroom.

I am one of those terrible mothers that cant stand the sight of anyone throwing-up. I see-I join....I hear-I join.....

Becca, bless her has got so used to me, she knows I am useless until after the fact and shouts to me to get out of the house quick *** she is gonna blow

After she has done she lets me know and thats when I stroke her brow and love her better. I know , I dont feel good about it, but thats the way it is.

Mandy

"I see - I join...I hear - I join..." now that was FUNNY...I mean, it's not funny that it happens...but how you shared it with us...very funny!

And Becca seems to have such a great attitude!!

Bless her heart...

And yours!!

 

[eyor44]

I am one of those terrible mothers that cant stand the sight of anyone throwing-up. I see-I join....I hear-I join.....
After she has done she lets me know and thats when I stroke her brow and love her better. I know , I dont feel good about it, but thats the way it is.
Mandy

Don't feel bad. I can't stand the sight or smell of blood. I can't even be in the same room when blood is drawn. or I am hitting the bathroom. When DS needed stiches I had to leave the room. Thankfully DH was there also. At least it made DS smile thinking of Mom out in the hallway trying very hard not to be sick.

 

[llurgy]

We went to see the doctor and she suggested to get her to eat just before going to sleep at night and to wake her up early or middle of the night to drink some apple/orange juice to kick up her blood sugar levels as she feels that it may be a really low blood sugar level doing the damage.

Alternatively, she would have to sleep with Oxygen on because it may be that she is in such a deep sleep she is not taking in enough Oxygen.

We are to try the Snacks/drinks for blood sugar levels first.

Fingers crossed that one of these works

 

[mom2lilnick]

oh.. poor thing. Kayla got really weird about 6 to 8 months before her period started. Very naseous, shakey and lol.. moody. We took her to the dr and he said blood sugar and we tested and tested for two weeks.. all was normal. Took her back to the dr and he said.. well, guess it is hormones. That was way back in Jan.. she didn't start her period until Aug. I thought I was going to go insane with all the freaky things she was doing.

Hugs!

oh.. I posted a pic of Kayla over on our PTR. Just for Becca!

 

[llurgy]

Awwwww!! That brought tears to my eyes! Kayla will have just turned 13 on the 17th of Jan so she is thinking of this as a bday trip along with Nick's MAW. We will have to plan something really special. Kayla is really shy and quiet and has never had more than a friend or two over for her bday's. Maybe we can plan a pizza night or something for the two of them at GKTW!

Give Becca a big hug from us!

Becca is not so quiet, she can talk the hind leg off a donkey AND an Elephant probably
She is however very close to the few friends she does have - which is very few because we live very rural, she is an only child and she is home-schooled. She tends to give her friends lots of attention, maybe too much sometimes. Tell Kayla that she may find Becca a little immature, but very friendly She is a little immature from not having any competition or input which children get from their peers and siblings.

I wrote on your PTR but I will thank you again for posting a Picture of Kayla so Becca will be able to recognize her when we get to the village.

It's the Christmas Party at the village the day after we arrive so if we dont manage to meet up before then I am sure we will see each other for Christmas

Mandy