~Kylie Jo Gibbons~

~Happy Birthday Kylie!~


"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
you."
~Winnie the Pooh~









Get your own glitter and more at BlingyBlob.com




Welcome to Kylie's web page. Kylie was welcomed into the world on September 20th, 2004- her parent's 1 year wedding anniversery. 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. We had been told she was an excellant surgical candidate last year. However, after further testing, surgery is not an option at this time. We continue to pray for her miracle. She went from March 12, 2006 to Dec 2006 with out a seizure. She was weaned from a seizure med and the seizures came back, more intense than ever. In addition to her brain tubors, TS also effects her in other ways. She has many tiny white patches of skin on her tummy and back. She has epilepsy and is currently taking 4 seizure meds. She is a few months behind but receives OT, PT and Speech through the Roseville School District,in her pre-school class, private PT through Kids Abilities and private speech through Ace Speech and Language, and home OT. We were blessed with a Christmas miracle last year (2006)~ our girl started walking! This year, we are praying for speaking in full sentences. And of course, no seizure!Kylie has been diagnosed with von Willdebrands disease, a blood clotting disorder, and we have also discovered that she has a varient 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 has a port-a-cath implant in her chest 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 truely our angel on earth. Kylie's favorite things are Elmo, her baby doll (Anna), dancing to music, books, taking baths, Dora, playing on the computer and her family, especially Grandma Karen (nana), Grandpa (poppa), her aunties and uncles, Grandma Sue and her mom and dad! But the true love of her life is her little sister, Ava Grace, who will be 2 on 2~2~07. She asks for "Aunna" (Ava) the moment she wakes up in the morning, as soon as she gets into the car, if she gets hurt and asks for her at bedtime. Kylie lives w/ her mom, dad, sister, 3 dogs, 1 cat, fish (Dorothy) and a partridge in a pear tree. 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:


Jessi

Zoey

Sweet Jess

Mary

Drew & Muffin

Caroline

Katelyn

Reese




My Sweet Girls



Kylie's photoshoot by:
www.digital-ink-studio.com

"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"
~Elizabeth Stone~



~Our Summer 2008~

Journal

Tuesday, October 7, 2008 1:31 PM CDT

Happy rainy tuesday. We have been staying pretty busy around here. Kylie had her ERG yesterday, at the U of MN. It went pretty well, aside from her being beside herself when she woke from anesthesia. We won't have the results back for a few weeks, so for now, we wait. Things are pretty good on the seizure front- still a few here and there but nothing earth shattering. Ky is loving pre-k and has even made some new friends! She is staying busy with therapy 3 afternoons a week and will be starting dance in a few weeks. Her speech seems to be growing in leaps and bounds- consistently speaking in 3 word phrases and is adding 4 words and some short sentences! Some days are better than others but we are seeing more good days than bad ones.

Ava started dance yesterday and although she looked quite cute, it seems like she is the "naughty ringleader" of the group. If the kids are doing something they are not supposed to, she is usually the one leading them to it. We are working on her listening skills, which seem to be on track if it something that will benefit her. Sighhhhhhhh.

Grandma took Ky to the Children's Museum w/ HOPE KIDS last week and had a great time. I spent the weekend in Alexandria w/ my 7940 moms and as usual, had a great time. One more day would've been ideal. =) We had another ultrasound this morning to check on baby #3, as well as some blood tests but will not have any results until next week. He/she looks like an active one! Please continue to pray for the health of this baby.

We don't have a lot planned for the week, aside from the usual. Ky has a dermatology appt on friday, at the U of MN, which Neil will probably take her to. I'll keep you posted if anything pops up. Thanks for checking in!

Hospital Information:

Childrens Hospital- St Paul, Mn

Links:

E-mail Author: riau2@aol.com

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