Please Donate to Make A Wish East TN to Help Kids Like Our Daughter.
Our daughter, Katie, is getting her wish granted by Make A Wish East TN. Katie’s wish is to go to Disney World with her entire family. She would love to meet Spider Man, Pooh and maybe a Princess or two. Make A Wish East Tennessee is granting her wish. They can only do this through donations.
Would you consider helping Make A Wish East TN by donating and making a child’s dream come true?
Keep scrolling down and you can read more about our sweet Katie.
Katie was born in my heart not in my belly.
The first time we met her was not in a hospital room surrounded by family and friends welcoming her into the world.
It was in a foster home.
She was sitting in the floor making noises pushing a vacumn back and forth back and forth. The vacumn was her friend. When we tried taking it away from her she, she yelled.
The foster mom changed her diaper on the cold bathroom floor and got her ready to leave with a social worker.
We were going with the social worker to Chuck E Cheese with Katie, and her 3 silbings. After spending 2 hours with Katie, we knew she was a child that had potential that no one care to see. They had just labeled her and left her to herself.
“She is MR, you know.”, is the statement we heard the first time we saw her.
She needed someone to encourage her, teach her, and love on her.
She needed a MOMMY! She needed ME!
And honestly, I knew she was supposed to be mine. Read this post to find out how I knew.
Within 6 months, we adopted Katie and her siblings.
She wasn’t born from my belly but she is part of me.
Before adopting Katie, we knew she had several special needs.
She was born with Kleefstra Syndrome. This is a chromosomal deletion 9q.34.
She was also a Fetal Alcohol Syndrome baby. She had trouble walking, talking, and chewing her food.
Within 6 months of being in our home, she walked unassisted, could label over 1000 words, and her chewing skills had improved.
If you want to read more about Katie’s special challenges click here.
In 2011, Katie’s health started declining.
She started having seizures followed by needing a G-Tube and a MACE (Malone Antegrade Continence Enema) procedure in 2012.
We found out she is a Dysmotility patient. Her entire gut from her esophagus to her bottom is slower than normal. She also has CVS (Cyclic Vomiting Syndrome).
In 2013 , she needed a Ileostomy procedure done because she was in and out of the hospital every 6-9 weeks.
Her health improved slightly until July of 2014. She was diagnosed with Ulcerative Colitis (UC).
Shortly after, she got a rare disease related to the UC called Pyoderma Gangrenosum (PG).
The next photo is of Pyoderma Gangrenosum during a flare-up. If you are like me and do not like looking at open, deep, painful wounds scroll past the next pic fast.
As she is getting older and her body is growing, her health is slowly declining.
In 2015, she was diagnosed with Reactive Airway Disease, poor bone density and needed a pin placed in her hip. It was during this time, that her PCP realized that her body is just not able to keep up with her growth. Her major organs can not sustain her growing body.
In June 2015, we were told that she has 3-5 years to live.
Also, around this time, Katie’s Nana referred her to the Make A Wish Foundation. Her seizure disorder combined with her dysmotility condition are life threatening. Click here to read “The Day We Became a Make A Wish Family”
Currently, Katie is dealing with a flare-up of PG but we caught it in time and started her on Prednisone. Then, she started developing side effects of the Prednisone. She has been on bed rest for the last month.
Hopefully, next week she will be up moving around and getting ready for her Make A Wish Disney Trip at the end of the month.
If you are interested in watching Katie’s videos click here for our YouTube Channel.
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