kailatilear
Mouseketeer
- Joined
- Oct 25, 2010
- Messages
- 306
Let me first introduce our family. We have 3 wonderful children. Kaila 16, Tilear 14, and Abby 8 wish child as we call her our pins and needles child. Myself (Deena) and my wonderful husband and father Steve.
How Abby came to get a wish. Abby has a disease called Osteogenesis Imperfecta aka brittle bone disease. I have this disease too, however, Abby has it more severe than I ever did. When Abby was born I suspected that she had this, however, no doctor would test her until her first break. Her first break came when she was 18 months old. We were in a mall and her leg bumped a leg of a table and I instantly knew it was broke. Ten weeks later came her second break, same leg again. When Abby was about 2 ½ she was sitting on a stool and leaned back onto a wall and she let out the worst scream. I knew something was broke, but what? Well she fractured multiple vertebrae, she was in the hospital for a week and put in a back brace. I cannot recall all her breaks, however, there have been multiple. Most of them are in her spine and vertebrae area. She has broke multiple bones in her hands from just tapping it on the door. We have found out that this disease can affect her kidneys, adrenial glands, liver, respitory organs, heart, she can lose her hearing along with her vision. We also have found out that due to the breaks in her vertebrea that she may eventually need rods put in her back. She has a wheelchair now, due to the fact that walking for a period of time, she becomes worn out and very sore. She lives on iburpophen daily, which is also not good for her internal organs. Hopefully soon we can figure out what to put her on for the bone pain. Her latest break was her knee cap, 1 week before her brace coming off, she tripped and fell and broke her femur, this was 3 months ago. We also discovered that Abby ha ADHD and asthma (due to the respitory problems). So too much coughing and there goes a rib or another vertebrea. She is so energetic and very positive with everything she goes through. It breaks my heart when I watch her watching all the other kids playing tag or riding a bike and knowing she wishes she could but knowing she can't. She just puts on a brave face and says, don't worry mom, I am having fun watching them.
When I got the call from MAW that she was approved for a wish, I was in total shock. I instantly called Steve and told him. His words were things like this dont happen to us. He was very skeptical, as was I. The MAW volunteers came this past Monday 10/25 and Abby instantly decided on Disney. We have never been and she said This is my chance to go somewhere I have always wanted to go.
I am a full time student going back to school for special education
, I have lost numerous jobs due to Abbys medical condition and missing too much time from work. I figured I have always wanted to be a teacher, and that way I will eventually have the same hours and days as her. Steve is employed full time through a door company, so with just his income money is tight. Kaila is a typical 16 year old girl and Tilear is a typical 14 year old boy with ADHD. The two older kids have watched Abby go through so much and have said so many times, that they wish they had this disease just to give their sister a break. They are so good with her and so overprotective with her.
Abby cannot ride a bike, have a trampoline or go to many sleepovers due to her condition. So a trip to Disney is something that she can actually feel like a child with no worries.
Now we are just waiting to hear from MAW
Kaila, Abby (Wish Child), Tilear
Steve(Dad) and Abby
Pumpkin Patch, Kaila, Abby, Tilear
Me (Deena) and Abby
How Abby came to get a wish. Abby has a disease called Osteogenesis Imperfecta aka brittle bone disease. I have this disease too, however, Abby has it more severe than I ever did. When Abby was born I suspected that she had this, however, no doctor would test her until her first break. Her first break came when she was 18 months old. We were in a mall and her leg bumped a leg of a table and I instantly knew it was broke. Ten weeks later came her second break, same leg again. When Abby was about 2 ½ she was sitting on a stool and leaned back onto a wall and she let out the worst scream. I knew something was broke, but what? Well she fractured multiple vertebrae, she was in the hospital for a week and put in a back brace. I cannot recall all her breaks, however, there have been multiple. Most of them are in her spine and vertebrae area. She has broke multiple bones in her hands from just tapping it on the door. We have found out that this disease can affect her kidneys, adrenial glands, liver, respitory organs, heart, she can lose her hearing along with her vision. We also have found out that due to the breaks in her vertebrea that she may eventually need rods put in her back. She has a wheelchair now, due to the fact that walking for a period of time, she becomes worn out and very sore. She lives on iburpophen daily, which is also not good for her internal organs. Hopefully soon we can figure out what to put her on for the bone pain. Her latest break was her knee cap, 1 week before her brace coming off, she tripped and fell and broke her femur, this was 3 months ago. We also discovered that Abby ha ADHD and asthma (due to the respitory problems). So too much coughing and there goes a rib or another vertebrea. She is so energetic and very positive with everything she goes through. It breaks my heart when I watch her watching all the other kids playing tag or riding a bike and knowing she wishes she could but knowing she can't. She just puts on a brave face and says, don't worry mom, I am having fun watching them.
When I got the call from MAW that she was approved for a wish, I was in total shock. I instantly called Steve and told him. His words were things like this dont happen to us. He was very skeptical, as was I. The MAW volunteers came this past Monday 10/25 and Abby instantly decided on Disney. We have never been and she said This is my chance to go somewhere I have always wanted to go.
I am a full time student going back to school for special education
, I have lost numerous jobs due to Abbys medical condition and missing too much time from work. I figured I have always wanted to be a teacher, and that way I will eventually have the same hours and days as her. Steve is employed full time through a door company, so with just his income money is tight. Kaila is a typical 16 year old girl and Tilear is a typical 14 year old boy with ADHD. The two older kids have watched Abby go through so much and have said so many times, that they wish they had this disease just to give their sister a break. They are so good with her and so overprotective with her. Abby cannot ride a bike, have a trampoline or go to many sleepovers due to her condition. So a trip to Disney is something that she can actually feel like a child with no worries.
Now we are just waiting to hear from MAW
Kaila, Abby (Wish Child), Tilear
Steve(Dad) and Abby
Pumpkin Patch, Kaila, Abby, Tilear
Me (Deena) and Abby
So, this is our family and Abby's story. I will post updates about her MAW. Abby goes to a new doctor on Monday 11/8. UVA medical center. We finally found OI specialists for her in our area without traveling hours away.
. Anyone know how long it usually takes. She is most excited about going to see Mickey in person. She has never been on an airplane either. I think it is still not sinking into her that this is real 
. I just can't wait to know something. Thank you all so much.
On a good note, the nice neighbor lady brought Abby over a new coat and a new pair of jeggings
We do things our own way and are not your typical troop. But our kids are great! We take all kiddos- regardless of conditions. That's kinda the point of GS- to be around other girls who are not the same as you and meet new people. At least that's what I thought! 
We did it for Piper too.... dunno if you read her Wish trip report.... my kiddos are the best little card makers! lol. Something to think about for later.
I hate to see her in that much pain
!! Job hunting, my oldest daughter Kaila, hurt her finger last night and was on pain meds, so she was home today from school. I have a huge biology test tomorrow
I have a job interview Wed morning and Abby starts physical therapy Thursday morning hopefully I will make it in time for my class Thursday morning after her pt. I still haven't heard from MAW, I know it can take a while, however, I just want to hear something
