~Kylie Jo Gibbons~
~Our birthday girl!~
"If you spend your whole life waiting for the storm, you'll never enjoy the sunshine."
~ Morris West
If you live to be a hundred,
I want to live to be hundred
minus one day,
so I never have to live without
~Winnie the Pooh~
Welcome to Kylie's web page. Kylie was welcomed into the world on September 20th, 2004- her parent's 1 year wedding anniversary. Kylie was diagnosed with Tuberous Sclerosis on 2-21-05. Our main problem with TS has been the multiple (26) tubors in her brain, which have caused her to have numerous seizures. Because her seizures do not correlate w/ where the tubors are located in her brain, she is not currently a surgical candidate. We continue to pray for her miracle. We also found out in February 2008 that she has a brain tumor, located in the left ventricle of her brain. Is is currently stable but she needs annual MRIs to monitor it's growth. In addition to her brain involvement, TS also effects her in other ways. She has many tiny white patches of skin on her tummy and back, as well as a white patch of hair. Luckily, she is a blond! She has epilepsy and is currently taking 4 seizure medications. Vigabatrin, one of her medications, can cause peripheral vision loss. She goes to the U of MN every 6 months, for a sedated test, that can determine if any damage is occurring to her eye. Since starting the medication in early 2008, our lives have completely changed and we are enjoying all of the advances Kylie has made, as well as the most stable time of her life. Her development is behind but she receives OT, PT and Speech through private therapy at Kids Abilities, in Shoreview. Kylie has been diagnosed with Von Willebrands Disease, a blood clotting disorder, and we have also discovered that she has a variant of the cystic fibrosis gene. She has chronic anemia and had received iron infusions, but is currently stable. She has been battling numerous sinus infections and has had 3 sinus surgeries but continues to get infections. She also has had 3 sets of ear tubes, yet still gets infections. She her port-a-cath implant removed from her chest this past spring, due to a massive infection. This was used for IV antibiotics, lab draws and IV fluids. Despite all of the challenges in her life, she ALWAYS has a smile on her face! She is a wonderful, happy, easy going little girl and our family is so thankful to have been blessed with her. She is truly our angel on earth. Kylie's favorite things are reading books, coloring, working on puzzles, playing on her ipad, watching the Disney Princesses, and getting into trouble with her best friend and little sister Ava. I have never seen two little girls more in love with each other. She also adores her little brother, Sheamus, (perhaps a little too much at times!) Kylie lives w/ her mom, dad, sister, and brother. Thank you all for your continued prayers. This site will keep you updated on her condition.
"We are each of us angels with only
one wing. And we can only fly
embracing each other."
~Luciano De Creschenzo~
Please keep our special friends in your prayers. Here are their websites:
Drew & Muffin
My Sweet Girls
Kylie's photoshoot by:
"Making the decision to have a child is momentous....
It is to decide forever to have your heart go walking around
the outside of your body"
~Our Summer 2008~
Sunday, January 8, 2012 11:49 PM CST
Hi all! Not sure if anyone ever checks in here anymore but since Ky has been stable for so long, I don't plan on updating this site anymore, unless something drastic were to happen. If you still want to ckeep in touch, we moved on to a blog~
Read Journal History
See you there!
Childrens Hospital- St Paul, Mn
http://www.mnepilepsy.org Kylie's neurologist
http://www.tsalliance.org info on Kylie's disease
http://www.journeyforjess.com fundraiser for Ky's angel