jojuvanlaanen
Mouseketeer
- Joined
- Mar 29, 2008
- Messages
- 117
Hello! In a few months our family will be joining the thousands (maybe millions?) of other "Wish families" as they are called, who have received the once in a lifetime opportunity to spend 7 days at the Happiest Place on Earth! Over the years, we have seen many positives come out of Jilly's tradgety, and this is one of them.
My daughter Jillianne was born with a brain malformation called Chiari Malformation. When she was just a little baby we noticed she had a very hard time going to sleep, sometimes staying up the ENTIRE night. Often she would bang her head against the wall or her crib. At 14 months she had her first seizure. Over the next 5 months she would have at least a dozen more. Finally at 20 months old her Neurologist ordered an MRI and that's when we saw the malformation. Her brain was too big for her skull, and it was being forced down into her spinal column which was blocking the flow of spinal fluid which caused hydrocephalus. At just 20 months old her ventricals were the size of an adults. She was scheduled for decompression surgery a little over a month later. On October 1, 2010 she went in for surgery. This was supposed to fix everything, but it didn't. As each day passed we kept waiting for her to recover. "She'll bounce back" the doctor said. "Give her one more day" he said. On October 5 a resident doctor came in to see if she has been able to walk. We put her on the ground....and she was limp. She couldn't stand. She couldn't sit. She couldn't walk. She was rushed into an emergency scan. The doctor said "I think it's either menengitis or a stroke." We said "well... it's obviously menengitis because kids don't have strokes." I was actually comforted by this because I knew menengitis could be treated. I felt ok.
The next thing I knew this world renowned surgeon, one of the best in the field of Chiari malformations, came RUNNING into our room to give us the devistating news. Our daughter has had a stroke. I froze. This amazing doctor was on his knees in our room filling out the consent form for emergency surgery. Within minutes she was in the operating room. We learned that she had a Bilateral Vertebral Artery Dissection. She had 2 clots in her vertebral arteries. If those clots had travelled just milimeters further, she would have had a brainstem stroke and would have died.
Fast forward 4 1/2 years later and here we are! For the rest of her life she will live with these clots. Day by day, week by week, year by year she pushes through. She is a survivor! The most brave, strong, loving, sweet, amazing little person I have ever met! She never complains about the many needles, doctors, machines or therapists. She takes it all with an attitude of thankfulness!
So this trip means the WORLD to her. To our family. Our 4 other children have been such troopers through all of this. They have tagged along to countless doctors visits, been there to love and support her, and have been selfless in their love for her. To have this time together and not have the stress of day to day life means so much.
Jillianne wishes to be transformed into a REAL princess and dine like a princess. Her WISH has been granted by the wonderful Make-A-Wish Wish granters!!!
My daughter Jillianne was born with a brain malformation called Chiari Malformation. When she was just a little baby we noticed she had a very hard time going to sleep, sometimes staying up the ENTIRE night. Often she would bang her head against the wall or her crib. At 14 months she had her first seizure. Over the next 5 months she would have at least a dozen more. Finally at 20 months old her Neurologist ordered an MRI and that's when we saw the malformation. Her brain was too big for her skull, and it was being forced down into her spinal column which was blocking the flow of spinal fluid which caused hydrocephalus. At just 20 months old her ventricals were the size of an adults. She was scheduled for decompression surgery a little over a month later. On October 1, 2010 she went in for surgery. This was supposed to fix everything, but it didn't. As each day passed we kept waiting for her to recover. "She'll bounce back" the doctor said. "Give her one more day" he said. On October 5 a resident doctor came in to see if she has been able to walk. We put her on the ground....and she was limp. She couldn't stand. She couldn't sit. She couldn't walk. She was rushed into an emergency scan. The doctor said "I think it's either menengitis or a stroke." We said "well... it's obviously menengitis because kids don't have strokes." I was actually comforted by this because I knew menengitis could be treated. I felt ok.
The next thing I knew this world renowned surgeon, one of the best in the field of Chiari malformations, came RUNNING into our room to give us the devistating news. Our daughter has had a stroke. I froze. This amazing doctor was on his knees in our room filling out the consent form for emergency surgery. Within minutes she was in the operating room. We learned that she had a Bilateral Vertebral Artery Dissection. She had 2 clots in her vertebral arteries. If those clots had travelled just milimeters further, she would have had a brainstem stroke and would have died.
Fast forward 4 1/2 years later and here we are! For the rest of her life she will live with these clots. Day by day, week by week, year by year she pushes through. She is a survivor! The most brave, strong, loving, sweet, amazing little person I have ever met! She never complains about the many needles, doctors, machines or therapists. She takes it all with an attitude of thankfulness!
So this trip means the WORLD to her. To our family. Our 4 other children have been such troopers through all of this. They have tagged along to countless doctors visits, been there to love and support her, and have been selfless in their love for her. To have this time together and not have the stress of day to day life means so much.
Jillianne wishes to be transformed into a REAL princess and dine like a princess. Her WISH has been granted by the wonderful Make-A-Wish Wish granters!!!
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Once we told her that she could pick something a little more fun... she immediately shouted DISNEY!!!! I have to admit I did ask(motivationally influence) 
if she would like to go to Hawaii, or on a cruise. Dad mentioned Paris, but brother and sister kept trying to keep Disney in her mind. In the end it was Ariel that made her decision. She loves all the princesses,
but especially Ariel so when she found out she could meet Ariel then that sold it! 
But they were good tears, so the headaches were worth it.
She also recieved a Wand making kit. Michael, Tyler, Kayla and Zoey all got gifts too. So awesome to include the whole family! 
I guess they needed her to actually say her wish, and be able to communicate it to them. Boy, am I glad she didn't say she wanted to go to the dentist again!!! 
WOO HOO! I was also told that we cannot really request certain airlines or flights. I requested Southwest. They said they do use Southwest a lot, but they can't make any guarantees. I am not a flyer, so I would really like to fly with an airline who has a great reputation like Southwest. Also, based on my research... they are the only, or one of very few, with a direct flight from Milwaukee to Orlando. Rockford and Madison have NO direct flights. So chances are good that we will get Southwest. 
77 days and counting!!!!!
We also received the 2015 Birnbaum Disney World Book. This really helped Jilly understand that we REALLY are going here. We've shown her videos and computer pics, but having a book for her to look at, and ask me at every page "are we going there? Are we doing that? Are we eating there?" and I can say YES, YES, YES!!! She get's so excited.
