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Old 03-15-2011, 12:35 AM   #16
Perrinsmommy
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How he is doing today!!

Since the shunt malfuntion/surgery mistake, we have been slowly trying to rebuild what was broken down. We change neurosurgeons. We now have a FABULOUS neurosurgeon. At the advice of our neurologist, we went to see a neuropsychologist. We learned a lot of new things. He has been diagnosed with ADHD, dysgraphia and depression. We were advised for him to start seeing a counselor because he is very aware of his medical conditions and disabilities. They said he knows that his life will be very hard. I have sat him down and explained to him, while his life will most certainly be hard, it will be wonderful because he is our baby boy and we love him and will help him in any way possible. He is a happy boy most of the time and he now has an emotional support animal named Stella.


She is sooo precious and loves him so much. Just seeing her turns his mood around!! So that is our story. Its a long one, but he is worth every minute of the stress and worry I have been thru!!!
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Old 03-15-2011, 04:52 AM   #17
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Hey Susan! I'm so glad you started a PTR I will be following along!

Perrin has definitely been through so much. It is hard watching our children suffer with so many question marks on how to treat them successfully. Having the surgeon cause more brain damage is just heartbreaking!

My 10yo son (not the wish child) would be so jealous that you are going to go Star Wars weekend! I can't wait to see it through Perrin's eyes
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Old 03-15-2011, 09:39 AM   #18
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WELCOME! I can't read all of your sons story as it hits too close to home, but I wanted to say HI anyways. I am looking forward to hearing about your journey to get to Disney!! Can't wait to hear about your visit today with the MAW volunteers!
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Old 03-15-2011, 07:01 PM   #19
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Oh Wendy, I second that program! It did wonders for my David.

Thank you for sharing more of Perrin's journey! God Bless you both!
Judy!!! Thats great!! I am an IM trainer at duPont Hospital for Children in Wilmington, DE. Would you mind pm'ing me about what changes you saw in him!! Im so interested in hearing everyone's story with IM. It just makes so much sense, I dont know why anyone would not try it!!

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NO! We had not heard about that program! We have an appt with his neurologist and new neurosurgeon (more on that in the near future. Just have to type the rest of the story LOL) coming up very soon. I will be asking about that since he now has corpus colloseum damage. Thanks for sharing that information. He has Private PT and OT and does OT and Speech in school. He does know about the trip and has been telling all his friends!!
Ask his PT/OT about it, maybe they are certified IM trainers!!! That is so cool that he is excited about his trip!!! When will you know the dates for sure?
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Old 03-15-2011, 10:12 PM   #20
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Meeting with wish givers!!

We met with our wish givers tonight for 2 hrs. We completed all the paperwork and they were talking about sending us in May. We asked for other dates because Perrin doesn't get out of school until May 28th. That would cut into star wars time, LOL, so we asked to go the first weekend in June! So tentative 6/2-6/9! They are saying we will stay at GKTW, which we are excited about! They are going to throw him at send off party at his favorite restaurant!! Hopefully we will hear soon about everything.
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Old 03-15-2011, 10:31 PM   #21
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Wow. Thanks for sharing your story. He sounds like a special guy--I hope he gets his wish to be there for Star Wars Weekend!
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Old 03-15-2011, 10:42 PM   #22
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Wow. Thanks for sharing your story. He sounds like a special guy--I hope he gets his wish to be there for Star Wars Weekend!
Thanks. He definitely deserves this!
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Old 03-15-2011, 11:25 PM   #23
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Judy!!! Thats great!! I am an IM trainer at duPont Hospital for Children in Wilmington, DE. Would you mind pm'ing me about what changes you saw in him!! Im so interested in hearing everyone's story with IM. It just makes so much sense, I dont know why anyone would not try it!!
Wendy, I am getting ready to send you a long PM. I think EVERYBODY should use it, I wish I could afford it for all three of mine who haven't tried it and a boost for David! (Our insurance didn't want to pay for David's therapy, but there were ways ).


YEA for meeting with Wish Granters, that is so exciting! I hope all of the plans work out just as you are WISHING for them too!!!
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Old 03-17-2011, 04:25 PM   #24
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Only time for a Quick note ( I am cooking dinner). Stella is SO CUTE!!! I will be back.

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Old 03-17-2011, 04:43 PM   #25
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Only time for a Quick note ( I am cooking dinner). Stella is SO CUTE!!! I will be back.

Thanks!! Happy St. Patrick's Day to you too!
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Old 03-17-2011, 10:37 PM   #26
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I am so excited to see that you got your dates. Star Wars weekends are really neat as you can see I am from Texas also we are lucky and get to go every six months because my youngest daughter works for disney if I can hel you in any way let know I will be happy to answer any questions if I can if not I know someone who can.
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Old 03-18-2011, 10:13 AM   #27
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I am so excited to see that you got your dates. Star Wars weekends are really neat as you can see I am from Texas also we are lucky and get to go every six months because my youngest daughter works for disney if I can hel you in any way let know I will be happy to answer any questions if I can if not I know someone who can.
Sheri
Thanks! I haven't been to WDW since I was 9 (20 years ago) and my dh and kids have never been! I vaguely remember the park so I am planning like I never went! LOL. I heard a lot of things have changed.
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Old 03-18-2011, 12:33 PM   #28
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I just wanted to say hi! I'm glad Perrin is getting a wish, and you will have an AMAZING time at SWW. We went on my DD's wish trip last year during SWW, and the kids loved every minute of it. DHS and the Star Wars characters were their favorite part of it all.

Catherine has hydrocephalus and VP shunt like Perrin, although different circumstances surrounding at all. We've not had any complications with the shunt (knock on wood!), but have loads of other medical issues alongside the hydrocephalus.

Can't wait to follow along as you plan!
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Old 03-18-2011, 07:01 PM   #29
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I just wanted to say hi! I'm glad Perrin is getting a wish, and you will have an AMAZING time at SWW. We went on my DD's wish trip last year during SWW, and the kids loved every minute of it. DHS and the Star Wars characters were their favorite part of it all.

Catherine has hydrocephalus and VP shunt like Perrin, although different circumstances surrounding at all. We've not had any complications with the shunt (knock on wood!), but have loads of other medical issues alongside the hydrocephalus.

Can't wait to follow along as you plan!
Its always nice to connect with others with a shunt. Most people around us don't know what it is. I do believe he is the only one at his school with one. In dec 09 was his first malfunction. I hope Catherine is doing well. Perrin is doing well, just dealing with the fall out from the mistakes made during the revision surgery.
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Old 03-18-2011, 07:10 PM   #30
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WE HAVE DATES!!!! YAY!!! (no flight times yet!)

Got a call from our wish manager today! We have our dates!!! June 2-June 9. They gave us 2 choices for our trip. First choice: 3 intense days of Star Wars Weekend. Fly out thursday, stay in a hotel on property, Star Wars weekend Fri, Sat, Sun, Fly out Mon. Or Choice 2: Fly out Thurs, stay at GKTW, and have the regular package of 3 day park hopper disney tickets, 2 days at Universal, etc. (No brainer in my book) We chose choice 2. Longer trip for P, more to do. The 3 day choice is usually for older kids, as it is from morning til close. We are super excited. We will be flying out from San Antonio, so we will stay in a hotel the night before because we live 2 hrs from the San Antonio airport. We can't wait!!!
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