~Kylie Jo Gibbons~

~ I love being a big sister!!~

"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 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. One of her medications, Vigabatrin, is not FDA approved, as it can cause retinal damage. She does to the U of MN every 6 months, for a sedated test, that can determine if any damage is occurring. 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 and attends a special education pre-school in the Roseville School district, where she also receives therapy. In the summer, she attends a conductive education program at PLUS Inc in Burnsville. This fall(2008), she also started regular pre-school at St. Bernards in St Paul, where her mom, aunt and uncles all went for high school. She loves it! Her development has skyrocketed this year and she is now speaking in short sentences, which we never thought would happen! 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 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 truly our angel on earth. Kylie's favorite things are reading books, coloring, working on puzzles, playing on the computer, watching Dora, and getting into trouble with her best friend and little sister Ava (or Auna, as Ky calls her). I have never seen two little girls more in love with each other. Kylie lives w/ her mom, dad, sister, 3 dogs & 1 cat. She is also going to be a big sister again in April, as we are eagerly anticipating the arrival of baby #3. 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

Wednesday, June 24, 2009 2:49 PM CDT

Where to begin? We continue to stay super busy and I continue to try and keep up! I have a few minutes, so I will give a quick overview~

KYLIE- She continues to do awesome on the seizure front. Still having them here and here but overall, great. Her behavior, on the other hand, has taken a complete nosedive. The past week or two, she has been whiny, really rough with her brother (hitting, pinching, shaking.....) and extra mean to her very patient sister- hitting, pulling hair and even gouged Ava's cheek last night. She likes to "tap" her friends on the head and then look to us for a reaction, then give a devilish grin when we get upset. My first thought is that the "little green monster" has finally come out and she is expressing jealousy over the new baby. She is definitely not getting as much attention as she once was but she was probably overindulged at one point too. It has really gotten bad since school has ended, so she could be bored too. She was used to constantly being on the go,go, go and now just gets to therapy a few days a week. It also could be where she is at developmentally or it could be that her tumor has grown. Who knows at this point. She starts her summer session at school next week, so that will help to keep her busy. She also started t-ball on Mondays with her therapy group and started yesterday at the rec center, playing w/ Ava. Her MRI is set up for Aug 3rd, so hoping that will give us good news and give us a little peace of mind. She is literately running where ever she goes and put together 6 words the other day, (granted, she needs a little help in the "making sense" department but I understood what she meant, "May I have read book please?" She is working hard on her manors, asking for what she wants using longer sentences and appropriately answering yes/no questions, "Is that a cat? A dog" A car?" etc. We are doing it at home, as well as working on it in therapy. She has grown a lot lately and the swim suit I bought her this spring is already too small!

AVA- She is definitely catching up to her big sister in size. they are wearing the same sizes clothes, for the most part, and are now in the same size shoe as well! Ava, although sassy as hell and loves to put up a good fight, is my "little mother" and helper. She adores being a big sister to Shea, loves holding and snuggling with him and just loves to have him around. I dropped him off at my friend Jody's house yesterday, so we could go to tball and she had a complete meltdown, thinking we were giving him away. =) She is so patient and loving to her big sister, no matter what Kylie does to her. Although she drives me nuts sometimes with her constant chatter, big ideas and dreaming up naughty things to do, I would be lost without her. She keeps me grounded and is letting me experience parenthood in ways I never though possible.

SHEA- He is also growing in leaps and bounds! He is well over 15 lbs and won't be 3 mo until next week! He has settled down into a pretty good routine- usually takes an hr morning nap and a 3-4 hr afternoon nap. He is crazy on his tummy, "army crawling" around. He is doing this new thing where his tummy is on the ground but he is almost standing on his feet and scoots his self forward. He is smiling more and loves to "talk" to us. He definitely has reflux and we can tell he is in a good amount of pain if we miss a dose of his reflux medication. His colic is getting better slowly and we are enjoying more happy moments than crabby ones. He still gets up a few times at night to eat but usually is quick and falls right back to sleep.

We took advantage on this MN heat and set the girls pool up on the deck. They LOVED splashing in there all day on Monday and will probably do it again this weekend. Neil is golfing all day on Saturday, so I need to find ways to keep them entertained. We have a few parties to go to this weekend as well, so that will help keep them busy. Next weekend, I am going to take the kids to Duluth with my parents, brother, Laura and Brooke. Neil has to work, so he will have to miss out on the fun. We are staying at the water park, which I know the girls will love. The girls both have a dentist appt on Friday and I am praying for no cavities, since they are less than stellar on letting me brush their teeth. It usually includes me pinning them down! I return back to work in a few weeks, which will be a huge transition around here but will be a much needed break for me! I still only work part-time at the hospital, so hopefully it won't be too hard on them, (or for Neil, for that matter!)

The kids are getting up from their naps, so I better go. Have a great week!
************************************************************
Now that the walk is over, we are starting to prepare for the golf tournament. Due to the lovely economy, we decreased the rates this year, with the hope more people could make it. The event will again be held at Como Park Golf Course on Sat, August 15th. Registration begins at 10 and t-time is 11am. Dinner and the raffle will take place at 430pm, at Joe Sensors, in Roseville. It is a super fun event and we would love to have you come out! Please email me for more info. Also, we are looking for prizes for the raffle. Please let me know if you would like to donate anything!


PS We are making Ky's caringbridge entries into a book, a new feature caringbridge offers. Although I know many do not sign the guestbook, we would love for you to say hi, so that when she gets older, she can see who all of her supporters were!

Read Journal History

Hospital Information:

Childrens Hospital- St Paul, Mn

Links:

E-mail Author: riau2@aol.com

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