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

[Perrinsmommy]

I am very sorry that you have to deal with that, but you are right about putting your foot down about not buying him the toy. I got in the bad habit of buying Liam a toy everytime he had to go see the doctor. He than expected it. When I was pointing out the $1 hot wheel, he would be pointing at the $20 dollar track. And than his brother and sister would get mad when I came home with nothing for them.

I am really excited about meeting you guys on Friday for Star Wars Weekend. Liam and I will have to put our heads together about something special for Perrin to remember us. He likes the Fetts huh?

I'll PM you closer to our trips about where we can meet and maybe #'s.

Yeah, it started with potty training. The only thing that helped him was a new transformers for 1 week of no accidents. Then it was the many surgeries. Then it was cause my dh felt bad about everything that was happening. Now it wants one every time we go to the store. We had just gone to target the day before and all the kids each a toy. I just couldn't in good conscious let her buy him that toy. Lol. We are excited too! We are going to try to get him and his sister up there for the jedi experience! He loves the fetts. I went to get him the boba fett shoes from stride rite before they were in the stores. LOL. They had to order them and ship them to my house. He wants to see all the bounty hunters at SWW tho. Hopefully they have more than jango and boba.

 

[Corrine 1973]

Yeah, it started with potty training. The only thing that helped him was a new transformers for 1 week of no accidents. Then it was the many surgeries. Then it was cause my dh felt bad about everything that was happening. Now it wants one every time we go to the store. We had just gone to target the day before and all the kids each a toy. I just couldn't in good conscious let her buy him that toy. Lol. We are excited too! We are going to try to get him and his sister up there for the jedi experience! He loves the fetts. I went to get him the boba fett shoes from stride rite before they were in the stores. LOL. They had to order them and ship them to my house. He wants to see all the bounty hunters at SWW tho. Hopefully they have more than jango and boba.

Go to the stage next to the star Tours ride when you first get there and sign up for the Jedi Training Academy. Maybe since you are going to be there for more than one day they will let you sign up for the JTA a day early. Make sure to let them know that you are on a Wish trip and how much he loves Star Wars. Liam did it in 2009 and loved it, but they picked the kids diffrently then. Then they picked from the audience, now the kids sign up at the beginning of the day. There is a great pic of Liam battling Darth Vadar on our PTR if you want to check it out.

There are lots of Bounty Hunter's there. Check out Youtube and see alot of Star Wars Weekends video. Some are real funny. Also take a look at the special show that went on last year when they closed down Star Tours. It is called Raiders of the Lost Jedi Temple of Doom. It is very funny. Also check out the Dance party that closes the Star Wars activities.

 

[sheridee32]

It is pretty neat be prepared the adult guest come dressed too it is very intresting my daughter told me there is a girl that has legally changed her name to princess leigh she is there and at star weekend disney has characters there that arent there normally it is pretty neat if you are a star wars lover

 

[Perrinsmommy]

Go to the stage next to the star Tours ride when you first get there and sign up for the Jedi Training Academy. Maybe since you are going to be there for more than one day they will let you sign up for the JTA a day early. Make sure to let them know that you are on a Wish trip and how much he loves Star Wars. Liam did it in 2009 and loved it, but they picked the kids diffrently then. Then they picked from the audience, now the kids sign up at the beginning of the day. There is a great pic of Liam battling Darth Vadar on our PTR if you want to check it out.

There are lots of Bounty Hunter's there. Check out Youtube and see alot of Star Wars Weekends video. Some are real funny. Also take a look at the special show that went on last year when they closed down Star Tours. It is called Raiders of the Lost Jedi Temple of Doom. It is very funny. Also check out the Dance party that closes the Star Wars activities.

That pic is AWESOME! I think I saw a pic of your daughter on another board talking to Belle? She is beautiful!!

 

[Perrinsmommy]

In about a week and a half we have our next appt with our new neurosurgeon. We went yesterday to get his MRI done, which was done surprisingly fast. He was ok as long as his favorite star wars toy was "watching" him from outside the window. The problem is that we got a letter in the mail recently that stated that the neurosurgeon that screwed up his surgery and caused most of the new problems he has now, as well as the new brain damage, has joined our NEW neurosurgeon's practice!!!! I want to scream!!! HOW could this happen to us?? I want to find out if she will be in ANY way connected to the care of my child. We are still looking into a lawsuit against her and I am wondering how this will affect his care with our new neurosurgeon. I feel like I in a nightmare I can not wake up from. How can she do this? We had filed a complaint with the hospital where the surgery took place shortly after the surgery. Our neurosurgeon KNOWS who she is and WHAT she did. I just don't know what I am going to do now.

 

[billwendy]

UGH!!!!!! That is just terrible!!!! How can she still be in practice!!! GRRRRRR!!!!!!!!! Im so sorry!!!

 

[Perrinsmommy]

UGH!!!!!! That is just terrible!!!! How can she still be in practice!!! GRRRRRR!!!!!!!!! Im so sorry!!!

Thanks. What is even more disheartening is that upon some further research on the internet, she settled a lawsuit in 2006 for more than $360,000. I don't know what to do. I don't knwo what I'm going to do if I see her when we go to the office.

 

[sheridee32]

Thanks. What is even more disheartening is that upon some further research on the internet, she settled a lawsuit in 2006 for more than $360,000. I don't know what to do. I don't knwo what I'm going to do if I see her when we go to the office.

Do yall use Scott and White are a Dr. out of Austin you can tell them you do not want her to see him but if something happens and she is the on call dr you may not have a choice but if you use scott and white they are great about making sure you dont see a dr that you dont want to. We use scott and white and have for over 25 years and I love them they did my kidney surgery and were great and they have an awsome pediatrics they are changing one of the hospitals in temple to a childrens hospital when my youngest grandaughter was born she was put back in nicu at 5 days old and they were awsome. I know they take chips and medicad which perrin should qualify for one of them. That would help some with meds and things I know we are retired state employees and that is the one thing I am worried about with this legislative session is what are they going to cut or go up on
Hope its a good weekend hope to be in your neck of the woods next weekend or sometime soon time for round wock doughnuts my mouth is watering we do craft shows at dell diamond havent done any this year.
Sheri

 

[Perrinsmommy]

Do yall use Scott and White are a Dr. out of Austin you can tell them you do not want her to see him but if something happens and she is the on call dr you may not have a choice but if you use scott and white they are great about making sure you dont see a dr that you dont want to. We use scott and white and have for over 25 years and I love them they did my kidney surgery and were great and they have an awsome pediatrics they are changing one of the hospitals in temple to a childrens hospital when my youngest grandaughter was born she was put back in nicu at 5 days old and they were awsome. I know they take chips and medicad which perrin should qualify for one of them. That would help some with meds and things I know we are retired state employees and that is the one thing I am worried about with this legislative session is what are they going to cut or go up on
Hope its a good weekend hope to be in your neck of the woods next weekend or sometime soon time for round wock doughnuts my mouth is watering we do craft shows at dell diamond havent done any this year.
Sheri

Perrin is on disability medicaid and SSI. She was an independent dr but most of our specialists are through Dell Childrens. She closed down her office and transfered to Dell. I am very disappointed that she was allowed to go to Dell after we made a formal complaint and they did an investigation. I will be telling the dr that I do NOT want her to even have ACCESS to his medical records. Isn't that part of HIPAA or can she look at them whenever she wants simply because she is a dr in the same office?

 

[Corrine 1973]

I am so sorry that you are going through this. I am plesent to the dr who told me that my son didn't have CF (wrong!!) but of course your case in much more severe.

I would definatly go in and talk to them ASAP. Explain to them the situation and that you in no case want this Dr to see or have any access to your son. Hopefully they will work with you. As for HIPA, I am not sure if it is the same everywhere but in Illinois the law states that only those who need to know should have access to his information. So if you don't want her to ever treat your son, than she should not have access to this information. Plus if there is a leagal case pending she definatly should not have any access to his files. You might want to tell your lawyer about the turn of events and they can help you on that level.

 

[billwendy]

Thanks. What is even more disheartening is that upon some further research on the internet, she settled a lawsuit in 2006 for more than $360,000. I don't know what to do. I don't knwo what I'm going to do if I see her when we go to the office.

Ugh - I pray you NEVER cross paths!!!!!!

 

[Perrinsmommy]

thanks everyone. We go there on the 11th and my dh and I are going to sit down this week and prepare what we want to say to our dr. I just hope she hasn't had the chance to delete anything in his file. I just find it suspicious that she chose Perrin's dr's practice to join out of ALL the dr's in Austin. Maybe I'm just being paranoid. I hope she isn't that underhanded and sneaky. I mean she already screwed up enough.

 

[angeque143]

Finally was able to read the whole story...Goodness Perrin has been through the wringer.....Funny that you mention the corpus colloseum. Eva just had an MRI and it showed thinning of it....I am curious how old was Perrin before they diagnosed him with CP...They are sticking with the diagnosis of "global dev. delays" I have my opinion on that diagnosis!!!

I am so sorry about your experience with the doctor..I have been down this road too! Our neonatologist dropped a bomb when Eva was at her most critical..."I think I overdosed her on the phenobarb"...She was in a coma from it for 3 days!! I wanted to transfer her out to a childrens hospital but was told if I did she would die....So I listened...I so blame myself for that choice especially since there were no specialists. WOULD HAVE COULD HAVE SHOULD HAVE....

NICU babies are fighters from the get go and the best thing about them is that they are the happiest kids ever. I am sure you would agree that you would not trade them for the world!

I cant wait to see what a great time Perrin is going to have in Disney!!

 

[Perrinsmommy]

Finally was able to read the whole story...Goodness Perrin has been through the wringer.....Funny that you mention the corpus colloseum. Eva just had an MRI and it showed thinning of it....I am curious how old was Perrin before they diagnosed him with CP...They are sticking with the diagnosis of "global dev. delays" I have my opinion on that diagnosis!!!

I am so sorry about your experience with the doctor..I have been down this road too! Our neonatologist dropped a bomb when Eva was at her most critical..."I think I overdosed her on the phenobarb"...She was in a coma from it for 3 days!! I wanted to transfer her out to a childrens hospital but was told if I did she would die....So I listened...I so blame myself for that choice especially since there were no specialists. WOULD HAVE COULD HAVE SHOULD HAVE....

NICU babies are fighters from the get go and the best thing about them is that they are the happiest kids ever. I am sure you would agree that you would not trade them for the world!

I cant wait to see what a great time Perrin is going to have in Disney!!

Thanks for reading! Yes he has been through a lot, but he is and always has been a fighter! Our neurologist in New Orleans refused to diagnose him with anything until he turned 3. They pointed out the damaged part of his brain that caused the CP and diagnosed based on that and his motor skills and muscle control. I can't believe that dr said that to you! Unfortunately us special needs moms have to deal with crazy drs. I too wish I sent him to a different hospital. I beat myself up all the time about the what ifs. What if he saw a different neuro from the start. What if I sent him to Children's instead of Tulane. And you are 1 million percent correct I would not trade him for the UNIVERSE!!! LOL I hope you find out more about Eva. Some drs are just SUPER slow on diagnosis for fear of lawsuits. I am blessed to have the BEST neurologist in the world!

 

[Corrine 1973]

I deffinatly have soft spot in my heart for NICU babies (ours was called ISCU but it's the same thing. Is it strange that I still have that number in my speed dial.) It is amazing to me that they have to come into this world fighting for their lives. My son spent more time in the hospital in his short life than all my times in the hospital combined.

I was on another thread with a man who has CP and his wife in an old thread showed the symptoms of CP. I am a little worried that the baby seems to be showing some of those signs. The neurologist doesn't seem to be to concerned but is scheduling a MRI for some time soon. (Very sweet man, wore a bow tie)

I hope that I am just being an overprotective mom (after all didn't I go through two magnisium treatments to prevent this) but I guess I'll just have to wait and pray.

But then again this is your thread, so sorry about the rant.

 

[Perrinsmommy]

I deffinatly have soft spot in my heart for NICU babies (ours was called ISCU but it's the same thing. Is it strange that I still have that number in my speed dial.) It is amazing to me that they have to come into this world fighting for their lives. My son spent more time in the hospital in his short life than all my times in the hospital combined.

I was on another thread with a man who has CP and his wife in an old thread showed the symptoms of CP. I am a little worried that the baby seems to be showing some of those signs. The neurologist doesn't seem to be to concerned but is scheduling a MRI for some time soon. (Very sweet man, wore a bow tie)

I hope that I am just being an overprotective mom (after all didn't I go through two magnisium treatments to prevent this) but I guess I'll just have to wait and pray.

But then again this is your thread, so sorry about the rant.

Don't be sorry! Rant away! I feel like some days the only thing I can do is rant on the computer because it only starts a fight with dh as he has heard all this many times before! I know how you feel about being overprotective. Perrin is in Miracle League baseball (special needs tball) and my dh keeps pushing me to "mainstream" him for baseball. To have him play with "normal" kids. I refuse on the basis of what other children have said. There is a little punk kid 2 doors down that told our neighbor's kid "I don't want to play with Perrin. He's SPECIAL NEEDS." Like he had some contagious disease or was the scum of the earth. But when Perrin started to get out his HUGE power wheel jeep, he wanted to be Perrin's best friend and drive the jeep. Our neighborhood SUCKS! I can't wait to move. My poor P has no friends in the neighborhood, except for our neighbor. All his friends live right around the school. UGH. Now I have to apologize for the rant. LOL. Sometimes I can't stop myself.

 

[Corrine 1973]

Don't be sorry! Rant away! I feel like some days the only thing I can do is rant on the computer because it only starts a fight with dh as he has heard all this many times before! I know how you feel about being overprotective. Perrin is in Miracle League baseball (special needs tball) and my dh keeps pushing me to "mainstream" him for baseball. To have him play with "normal" kids. I refuse on the basis of what other children have said. There is a little punk kid 2 doors down that told our neighbor's kid "I don't want to play with Perrin. He's SPECIAL NEEDS." Like he had some contagious disease or was the scum of the earth. But when Perrin started to get out his HUGE power wheel jeep, he wanted to be Perrin's best friend and drive the jeep. Our neighborhood SUCKS! I can't wait to move. My poor P has no friends in the neighborhood, except for our neighbor. All his friends live right around the school. UGH. Now I have to apologize for the rant. LOL. Sometimes I can't stop myself.

Some people can be so ignorant and unfortunatly is usually starts in the home with some very ignorant parents. I actually had to pull my DD grammy aside to have a talk with her when my DD told my son (has CF) that he was going to die. I told her to please let me talk to my kids about CF.

for both you and Perrin. We can't wait to see you guys in June.

 

[billwendy]

Ugh - uneducated kid with uneducated parents - what a totall bummer that he said that!!

I work super hard at having kids accept any person for who they are. I bring a bunch of teens from my church with me to Camp Promise in MT. Its a camp for kids/adults with various special needs. At first, the teens were kinda scared to come - but now for some of them its their 7th year coming!! And, 3 of them have made decisions to become special education teachers. They have learned that special education or special needs doesnt me dumb! It just means a bit different. My nephew Matt, who is now 17 (came with us to camp when he was just 11) gets in and really has a good time with the campers - he tackles the Kids with Down Syndrome and wrestles with the guys too!!!

People are just different, we need to be accepting!!!!!!

 

[Perrinsmommy]

Some people can be so ignorant and unfortunatly is usually starts in the home with some very ignorant parents. I actually had to pull my DD grammy aside to have a talk with her when my DD told my son (has CF) that he was going to die. I told her to please let me talk to my kids about CF.

for both you and Perrin. We can't wait to see you guys in June.

I am soooo sorry she did that! That is uncalled for, family or not. We are excited to meet you and Liam too.

 

[Perrinsmommy]

Ugh - uneducated kid with uneducated parents - what a totall bummer that he said that!!

I work super hard at having kids accept any person for who they are. I bring a bunch of teens from my church with me to Camp Promise in MT. Its a camp for kids/adults with various special needs. At first, the teens were kinda scared to come - but now for some of them its their 7th year coming!! And, 3 of them have made decisions to become special education teachers. They have learned that special education or special needs doesnt me dumb! It just means a bit different. My nephew Matt, who is now 17 (came with us to camp when he was just 11) gets in and really has a good time with the campers - he tackles the Kids with Down Syndrome and wrestles with the guys too!!!

People are just different, we need to be accepting!!!!!!

That's why I LOVE Miracle League. All of the buddies are high school kids from the area and are soooooo sweet!