New! 6/22! Autographs, Pixie Dust, and Bears, oh my! (A Teddy Bear's TR.)

[t_daniels]

Disclaimer: No, this trip report wasn't really written by a teddy bear. Parts of it may be cheesy, and downright silly at times. However , I wanted to try and keep most of my posts about Project Pixie Dust separate from my main TR, that way if people wanted to read about one, they wouldn't need to read about the other. Also, after the trip, I'm donating this Boozle Bear, and his autograph/picture book from the trip, to a family affected by hydrocephalus, so I wanted to make him a TR that people interested in winning the bear could read. Okay, you've been warned. Continue to the trip report!

Hi there!

My name is Boozle, and welcome to my trip report.

First though, let me tell you a little bit about me.

I was born this year, by several hard working volunteers. The rest of my biological family lives with the Hydrocephalus Association. You can read about them here. They're waiting to be adopted, like I was.


I was adopted by Tina and Matt Daniels.

They're taking me to Disney World with them! I can hardly wait.

I'm so excited to meet all the characters, and take lots of pictures!

As fun as going to Disney will be, the real magic starts when I get home!

You see... I was born with a brain condition called hydrocephalus. It's basically when the fluid around your brain and your spinal cord doesn't drain right, and the doctors have to go in, and do something to make it drain right.

It's not curable - but that's okay. I've been treated for it, and I have something my mom and dad call a shunt. That keeps everything working as it should. Sometimes I get headaches, and I might have to have a surgery again... but for now I'm okay.

After our trip, I get to do something very special. I'm going to leave my mom and dad, and go live with a little boy or a girl who has the very same brain condition I have!

Sometimes, having a condition you don't know much about is scary. So, it's going to be my job to help them not be afraid. I get to explain to them what the condition is - and I can even show them my shunt! (Surgeries on teddy bears are much more quick and painless than for little children - so I don't mind it!) I can even help explain to siblings, or teachers and friends at school. I can really help out, and make things less scary for everyone.

I'll also bring a scrapbook with me to my new family. I'll get to tell them all about my trip, and about all the characters I met, who wanted to say hello to them. Maybe someday my new family will take me back to Disney, and I'll get to introduce them to my old friends!

I can't wait to start working on the scrapbook. I'm not too crafty though, so Mom has to help me with that one. That, and well, our scissors are about as big as I am. And... the lack of thumbs is quite an issue!


I'm most looking forward to meeting Duffy the bear. I think we have a lot in common. Mom tells me that he was a good friend to Mickey Mouse! He kept Mickey from being lonely. It sounds a lot like what I'm going to be doing! I can't wait to meet him... maybe he'll have some pointers for me!

I've got to go finish packing now, but I'll be back later to post pictures and stories from the trip! I can't wait to fly in the plane, I hear it's so cool! (Though it terrifies Mom....)

ETA: My mom has hydrocephalus, too. That's why she understands so well how I can help other kids with it. She says that she wishes she'd had a friend like me when she was little...

 

[t_daniels]

Chapter 1 - Ohana!

 

[blessedmom4]

I am SO in! My youngest son has Intracranial Hypertension/Pseudotumor Cerebrii and while it isn't hydrocephalus, this tugs at my heart (I am also an RN). What a WONDERFUL IDEA!! I am often MIA in my signing in, but will catch up and follow along as I can. Boozie Bear is adorable.

 

[t_daniels]

I am SO in! My youngest son has Intracranial Hypertension/Pseudotumor Cerebrii and while it isn't hydrocephalus, this tugs at my heart (I am also an RN). What a WONDERFUL IDEA!! I am often MIA in my signing in, but will catch up and follow along as I can. Boozie Bear is adorable.

Aw!!

Thank you! I thought it was a good idea. I mean,I like having him, but he can help other kids much more. They're for sale, but not everyone has the money, or even know about them. I didn't until I started volunteering with the Hydrocephalus Association.

Glad to have you here.

How old is your son?

 

[blessedmom4]

Aw!!

Thank you! I thought it was a good idea. I mean,I like having him, but he can help other kids much more. They're for sale, but not everyone has the money, or even know about them. I didn't until I started volunteering with the Hydrocephalus Association.

Glad to have you here.

How old is your son?

David is 18. He GRADUATES High School May 18! (I have 4 children total: Christian 22, David 18, Rachel 14 and Lisa 10).And I am ONLY 29.

I am for anything that spreads awareness for illness and this is a FABULOUS idea!

 

[t_daniels]

David is 18. He GRADUATES High School May 18! (I have 4 children total: Christian 22, David 18, Rachel 14 and Lisa 10).And I am ONLY 29.

I am for anything that spreads awareness for illness and this is a FABULOUS idea!

Oh, cool! I was thinking of a little son , I'm not entirely sure why! I'm with you now.

And oh, I know the feeling. I go MIA sometimes, too. So, no worries.

 

[teekathepony]

I think this is a great idea so I'm in for Boozle's TR too.

 

[t_daniels]

I think this is a great idea so I'm in for Boozle's TR too.

Thank you! Hoping it works out great.

 

[PrincessInOz]

I think I need to follow along to make sure that Teddy Boozle has had a great trip as well (and isn't left to fend for himself in the resort room!!).

 

[t_daniels]

I think I need to follow along to make sure that Teddy Boozle has had a great trip as well (and isn't left to fend for himself in the resort room!!).

Boozle says thank you. It's appreciated!

 

[wiigirl]

In for your TR.

 

[t_daniels]

In for your TR.

Glad to have you!!

 

[Paula Sedley-Burke]

I'm in! Sorry to hear about your condition :-( Jambo!

 

[Rhody Red]

I've just gotta follow this! I was born with Hydrocephalus myself. I had a Shunt from 1 month old until just before my 23rd Birthday (1997). After 2 Revisions (2 Scary Shunt failures), they took it out and did a then-experimental procedure that (thankfully) worked. It's been 16 years now. I do get headaches from time to time, but so far, so good.

The March Of Dimes helped so much when I was an Infant and at 3, they asked my Parents if I could be their Poster Child.

I think what you're doing is wonderful!

 

[t_daniels]

I'm in! Sorry to hear about your condition :-( Jambo!

Glad to have you here This is my teddy bears TR, my link to mine, should be in my signature.

 

[t_daniels]

I've just gotta follow this! I was born with Hydrocephalus myself. I had a Shunt from 1 month old until just before my 23rd Birthday (1997). After 2 Revisions (2 Scary Shunt failures), they took it out and did a then-experimental procedure that (thankfully) worked. It's been 16 years now. I do get headaches from time to time, but so far, so good.

The March Of Dimes helped so much when I was an Infant and at 3, they asked my Parents if I could be their Poster Child.

I think what you're doing is wonderful!

Was it the ETV, or something else?
Fantastic they helped you so much!

 

[Rhody Red]

Was it the ETV, or something else?
Fantastic they helped you so much!

I believe it was. Honestly, that frame of time has always been very hazy. The only thing I remember was waking up in the Hospital room. My (now)ex-Husband found me on the Kitchen Floor, unconscious. I remember them saying something about "Establishing a Brain Cavity". So, I'm guessing that must be it. He was given the choice for them to do another Shunt or that Procedure. I'm glad he chose the Procedure. I just had really bad luck with Shunts.

 

[t_daniels]

I believe it was. Honestly, that frame of time has always been very hazy. The only thing I remember was waking up in the Hospital room. My (now)ex-Husband found me on the Kitchen Floor, unconscious. I remember them saying something about "Establishing a Brain Cavity". So, I'm guessing that must be it. He was given the choice for them to do another Shunt or that Procedure. I'm glad he chose the Procedure. I just had really bad luck with Shunts.

Yeah. Etvs are so much better, but there's so many areas of criteria you have to meet.

It's nice though, since there's no foreign material- infection can't happen!

They can however, heal closed. It isn't common, but it can still happen.
Far better treatment than a shunt, but I wish we had a cure. :/

 

[Rhody Red]

Yeah. Etvs are so much better, but there's so many areas of criteria you have to meet.

It's nice though, since there's no foreign material- infection can't happen!

They can however, heal closed. It isn't common, but it can still happen.
Far better treatment than a shunt, but I wish we had a cure. :/

Exactly. My Neurosurgeon is keeping an eye on it.

When I had my last MRI (I also have MS.. Lucky me!), my Neurologist noticed that one of the Ventricles was slightly enlarged. The Neurosurgeon said that if it comes down to it, she could go in and reopen it. I was really worried about having another Shunt, but she said that she doesn't think it'll be necessary.

Thought I'd share this. It's one of my favorite Pictures. It's me with my Mother (she also has MS), and Connecticut's Governor at the time, Ella Grasso.
http://flic.kr/p/efZMXL

 

[t_daniels]

Exactly. My Neurosurgeon is keeping an eye on it.

When I had my last MRI (I also have MS.. Lucky me!), my Neurologist noticed that one of the Ventricles was slightly enlarged. The Neurosurgeon said that if it comes down to it, she could go in and reopen it. I was really worried about having another Shunt, but she said that she doesn't think it'll be necessary.

That's good! That they won't have to go back, anyway.

And aw. Do you deal with it ok? My only other condition is strabismus. Turned in eye, finally cosmetically fixed. But no depth perception. Makes driving fun.

Sad though, I spent years trying to get Magic Eye books...only to find out I physically couldn't. Or see 3D movies. :/