Pre Trip for Perrin: MAW WDW/GKTW for Star Wars Weekend!! June 2-9 2011!

[Perrinsmommy]

So I spoke to the neuro today and he is not sure what has happened. He wants us to watch him and make sure he is not alone at school, hm etc. If he continues to have spells of confusion to call back.

 

[billwendy]

So I spoke to the neuro today and he is not sure what has happened. He wants us to watch him and make sure he is not alone at school, hm etc. If he continues to have spells of confusion to call back.

Awww- I'll be praying for him - hope it was just one of those things and doesnt happen again!

 

[cajunfan]

Hi there!

I have finally had some time to read today, and caught up on Perrin's story!

Wow! What a great kiddo! I am glad you all found a home in Austin...I have never been but heard it is a great place to live.

Where are you from in NOLA? I grew up on the westbank (most of my family still lives there)...

I hope the latest incident is like Wendy said...just an isolated one of those things and it won't happen again.

Take care!

Lynn

 

[Corrine 1973]

I was on the DIS last night and thought of you guys. It was a thread that had tips for Star Wars Weekend. Here is the link if you want to check it out.
http://www.disboards.com/showthread.php?t=2652926
There is a lot of great information on there. Some of it will not pertain to you because of your special GAC card a button, but I don't know if that changes at all for the Actor autographs. I also read that there is a mad dash for JTA in the morning so maybe we can talk to them later on the first day and because he is on a wish trip they will be willing to sign him up for a spot on the next day.

I am going to PM you some other stuff

 

[Perrinsmommy]

Hi there!

I have finally had some time to read today, and caught up on Perrin's story!

Wow! What a great kiddo! I am glad you all found a home in Austin...I have never been but heard it is a great place to live.

Where are you from in NOLA? I grew up on the westbank (most of my family still lives there)...

I hope the latest incident is like Wendy said...just an isolated one of those things and it won't happen again.

Take care!

Lynn

Lynn,
We lived in Kenner. Of course we were between Lake Ponchatrain and the Mississippi River so we got water from both when Katrina overflowed it! Awesome. My mom still lives in Metairie. I don't think she will ever move. I hope so too. We are taking precautions where he is never by himself at school and making sure he gets plenty of sleep!

 

[Perrinsmommy]

I was on the DIS last night and thought of you guys. It was a thread that had tips for Star Wars Weekend. Here is the link if you want to check it out.
http://www.disboards.com/showthread.php?t=2652926
There is a lot of great information on there. Some of it will not pertain to you because of your special GAC card a button, but I don't know if that changes at all for the Actor autographs. I also read that there is a mad dash for JTA in the morning so maybe we can talk to them later on the first day and because he is on a wish trip they will be willing to sign him up for a spot on the next day.

I am going to PM you some other stuff

Thanks!! I keep trying to find the celebrity list. Thanks for asking about that!

 

[Corrine 1973]

There is a partial celeb list on the thread. Of course it is not official from Disney yet. They will not make if official until about the week before the first date on May 20th. I know that the voice of Akoosha and Obi Wan Kenobi for the CW are hosting the weekends so they will be there. I also hear that Ray Parks (Darth Mall) is going to be there the last two weekends which is the one we are going to be at.

 

[cajunfan]

Lynn,
We lived in Kenner. Of course we were between Lake Ponchatrain and the Mississippi River so we got water from both when Katrina overflowed it! Awesome. My mom still lives in Metairie. I don't think she will ever move. I hope so too. We are taking precautions where he is never by himself at school and making sure he gets plenty of sleep!

I know my family was lucky. They had damage, but all what we consider "normal" hurricane damage scared1...no rising water. As much as it impacted everyone, I noticed it mentally impacted my parents a lot...both are(were) still changed in a not so good way since then.

Star Wars weekend is interesting at WDW. You might want to also go to allearsnet.com. They usually have a lot of info. Also ask away on the main thread...I knw that there have been others that have been on Wish Trips during that time, and they may have insight on how/if the "magic card" will help with any of the SWW special events. Have you asked your MAW chapter about arrainging something special for him (like a meet & great)? Some chapters will try to do things like some won't...it doesn't hurt to ask nicely! If they don't, it might be worth a try to email WDW directly...

Take care!
Lynn

 

[Perrinsmommy]

There is a partial celeb list on the thread. Of course it is not official from Disney yet. They will not make if official until about the week before the first date on May 20th. I know that the voice of Akoosha and Obi Wan Kenobi for the CW are hosting the weekends so they will be there. I also hear that Ray Parks (Darth Mall) is going to be there the last two weekends which is the one we are going to be at.

SWEET! Perrin loves Darth Maul! We are still hoping for they actor who played Jango Fett.

 

[Perrinsmommy]

I know my family was lucky. They had damage, but all what we consider "normal" hurricane damage scared1...no rising water. As much as it impacted everyone, I noticed it mentally impacted my parents a lot...both are(were) still changed in a not so good way since then.

Star Wars weekend is interesting at WDW. You might want to also go to allearsnet.com. They usually have a lot of info. Also ask away on the main thread...I knw that there have been others that have been on Wish Trips during that time, and they may have insight on how/if the "magic card" will help with any of the SWW special events. Have you asked your MAW chapter about arrainging something special for him (like a meet & great)? Some chapters will try to do things like some won't...it doesn't hurt to ask nicely! If they don't, it might be worth a try to email WDW directly...

Take care!
Lynn

Katrina unfortunately had a lasting emotional toll on a LOT of people. Perrin included. He just couldn't understand why we couldn't go home and why we kept moving. Luckily we had our 2 kitties with us so he was kinda ok. Part of Perrin's initial wish to our chapter is to meet Darth Vader and the Storm troopers, so we will see. Hopefully they can arrange something special!

 

[brookerene]

Hi Guys.... I sure hope that Perrin'swish with the star wars part comes true.... I bet that Katrina really affected him...that is frightening for anyone, let along a little guy! I also hope hy can get a reading on his seizures....

 

[Perrinsmommy]

Hi Guys.... I sure hope that Perrin'swish with the star wars part comes true.... I bet that Katrina really affected him...that is frightening for anyone, let along a little guy! I also hope hy can get a reading on his seizures....

I hope he can meet Vader or even let us sign up for the Jedi academy early so we don't have to run to beat the crowd. I REALLY hope that we can get around all the fastpass nonsense for the autographs.

 

[Perrinsmommy]

So we have our neurosurgeon appt. tomorrow. I am dreading this appt for many reasons. 1 reason is that I am fearing running into his old neuro that joined his practice. I may lose it. She did SOOOOOO much damage to him its crazy. 2nd is that I fear we are going to hear bad news. It seems like every time we go to a dr appt we hear bad news. Last time we went to the neurosurgeon we found out that Perrin has abnormal folding in the left rear side of his brain and periventricular leukomalacia. I really hope this is a routine appointment and his MRI is ok

 

[Corrine 1973]

I am sure that you will have a great time no matter what, and I will be there that first morning with my camera out taking tons of pictures thta I will share with you later.

 

[Perrinsmommy]

So we went to see our neurosurgeon today and got some good news. Although the old neurosurgeon is at his practice, she technically has no access to his records. If she tried to access his file there will be a record of it. Also he agreed that she messed up and he is going to take a closer look at his mri to see where she damaged his corpus colloseum. Good news is he didn't try to say that any of his new problems weren't from the mistake. He actually said that it is VERY likely that the blepharospasm was caused from the damage she created. He also said that when he started his practice 5 yrs ago when he moved here from NYC, he tried to get the old neurosurgeon to join his practice. He knew she was slipping. Once she messed up and made a mistake during OUR son's surgery, it gave him the ammo to "pull the trigger" His words. He know all about all of her other malpractice suits and everything. He basically made it clear that our coming to his practice helped him get her out of doing surgeries. Quoting him "I brought her to my practice to save Austin and to save other children from getting hurt like your son" I feel better that she is no longer practicing alone, but I keep thinking at what cost? At the cost of my child being severely injured? More brain damage being inflicted? On the other hand, his MRI looked great. Ventricles look great. He did a little test and it did show corpus damage.

 

[Corrine 1973]

So we went to see our neurosurgeon today and got some good news. Although the old neurosurgeon is at his practice, she technically has no access to his records. If she tried to access his file there will be a record of it. Also he agreed that she messed up and he is going to take a closer look at his mri to see where she damaged his corpus colloseum. Good news is he didn't try to say that any of his new problems weren't from the mistake. He actually said that it is VERY likely that the blepharospasm was caused from the damage she created. He also said that when he started his practice 5 yrs ago when he moved here from NYC, he tried to get the old neurosurgeon to join his practice. He knew she was slipping. Once she messed up and made a mistake during OUR son's surgery, it gave him the ammo to "pull the trigger" His words. He know all about all of her other malpractice suits and everything. He basically made it clear that our coming to his practice helped him get her out of doing surgeries. Quoting him "I brought her to my practice to save Austin and to save other children from getting hurt like your son" I feel better that she is no longer practicing alone, but I keep thinking at what cost? At the cost of my child being severely injured? More brain damage being inflicted? On the other hand, his MRI looked great. Ventricles look great. He did a little test and it did show corpus damage.

I am very glad to here that she will have no access to your sons case. If I was in your shoes I don't think I would even want to be see her. I guess it makes sense that the doctor pulled her in and that she isn't out there doing surguries anymore, but it realy sucks that it is at the expense of poor Perrin.

I am glad that the MRI came out so well, sad to here about the corpus damage.

 

[Perrinsmommy]

I am very glad to here that she will have no access to your sons case. If I was in your shoes I don't think I would even want to be see her. I guess it makes sense that the doctor pulled her in and that she isn't out there doing surguries anymore, but it realy sucks that it is at the expense of poor Perrin.

I am glad that the MRI came out so well, sad to here about the corpus damage.

Thanks Corrine! I love to sign in and see your words of encouragement! We can't wait to go to Disney and even my dh is getting in the spirit now.

 

[Corrine 1973]

Thanks Corrine! I love to sign in and see your words of encouragement! We can't wait to go to Disney and even my dh is getting in the spirit now.

No problem, us mommies got to stick together.

So glad you DH is getting into the spirit. You're going to have a blast.

 

[Perrinsmommy]

So, I am starting to think of things to put together for the trip. Me and my dd have been looking at pictures on the internet to do iron on transfers for our trip and we came across some twirl skirts that she fell in LOVE with! Unfortunately, Mommy only has a handheld "machine" that I use for hemming, light repairs. So, I am trying to decide whether I want to undertake this project with my little machine/hand sewing. Also tried to fire up the printer and it refuses to print. Everything is crapping out on me! AWESOME! LOL. Isn't that how things go?

 

[Perrinsmommy]

Ok, I haven't fallen off the face of the earth! Busy busy week!!! Perrin and Julianna (if you hear me call her juju that is her nickname, sometimes just easier to type that! ) had their 2nd annual spring fling this past weekend and Perrin had his miracle league game. This time they did kickball instead of the regular tball game. It was super cute. I could not believe how well he kicked that ball! He was awesome! We were unfortunately late to the kickball game because P wanted to dunk one of his teachers in the dunk tank at spring fling. Lol. Last year it was the PE coach, this year it was one of his reading group teachers! So we had to wait for her turn. They had fun in the inflatable houses, although Perrin had some trouble with the rock climbing wall part because he just couldn't get his legs to work the wall. At least he had about 4 of his friends trying to help! They are so sweet. : Then we had to check the teacher auctions because Perrin had bid of some free time with the teachers. He won 2 out of the 3 auctions he bid on. Now he needs to schedule some time with 2 teachers for an ice cream sundae after school and he gets to bring a friend! He is so excited! I do think that my dh was exhausted after all that and he still had to work night shift. He had just gotten home at about 4 am, got up at 12, and back to work for 6. Unfortunately the other night shift leader called off so he was there from 6 pm saturday until 7:30 am on sunday. Ugh he was so tired!