Clark Reservation State Park, Jamesville, N.Y.
Saturday October 16th
Registration starts @ 9:00am with a walk/climb @ 10:00am
$10/person or $25/family
A year has passed and Katlyn Fleury continues her climb to recovery. For anyone who has suffered a traumatic brain injury its effects can be life changing. The recovery process can take weeks, months or years and requires hours of physical and mental rehabilitation. This walk is symbolic of the TBI recovery process.
Last year’s walk drew 88 participants in support of Katlyn’s recovery. Please join us in a guided hike through Clark Reservation State Park which takes place at the height of the fall foliage season. Clark Reservation State Park is only 8 miles southeast of Syracuse. You will have your choice of two different hikes to take part in. The Mildred Faust Trail, which is an easy 3/4 mile walk through the forest or the Cliff Trail a more difficult hike down to a glacier formed lake followed by a 175 stair climb, approximately 1 1/4 miles long. A portion of the proceeds will go to benefit other TBI survivors.
Refreshments provided
COME SUPPORT TBI PATIENTS IN THEIR CHALLENGE TO RECOVER
They weren’t kidding when they all said a year ago “it’s a marathon, not a sprint”. Although, there are times when I feel like she isn’t recovering fast enough I am reminded of the progress she has made in just the last 8 months. She has been taking some steps with her left leg in the parallel bars but what is most impressive to me, is that what once took 3 people to do she can now accomplish with 1. After months of practice Katlyn finally has the strength to roll over on her side and push up to a sitting position.
We are fortunate enough to have a teacher who has been a valuable member of her rehabilitation. It had taken her just three weeks to get Katlyn a Dynavox communication device which is a computer used to help Katlyn express herself. It opens so many windows for Katlyn and although, she is in the beginning stages of learning how to navigate through the different screens we are hopeful that she will master it in no time, but I will still pray for the day that I can once again hear her voice.
Katlyn got to cash in on a promise this weekend. Uncle Mike promised Katlyn in those first few weeks after her accident that when she woke up and was able she could shave his head. It took him 2 1/2 years to grow it out and a 1/2 hour to chop it off. Way to go Kate!
Save the date: 2nd Annual Katlyn’s Climb on October 16th 9am at Clark Reservation State Park
When I look back just 6 months ago at what Katlyn was like when we first came home in January I am amazed at how far she’s come. Back then her Neurosurgeon told me “she’s exceeded our expectations” and for reasons you wouldn’t understand this comment was bittersweet because I KNEW Katlyn WOULD continue to progress. Katlyn has had periodic days of feeling down but recently it has lasted longer than usual and includes being more emotional and a unwillingness to work, which I believe is due to her being much more aware of her situation and being socially disconnected. Although she didn’t INITIALLY agree, I thought it only appropriate to take Katlyn to church for a “service of healing” and for many reasons, which turned out to be an emotional service for me and many of the parishioners. Katlyn also agreed to meet others who have been in her condition and can offer her additional support. I have already noticed a difference this week in her attitude and performance.
Although, we have been approved for therapies through the school we are still waiting for the school to get involved. We have been trying to challenge Katlyn with different therapeutic activities. The most challenging is when she has co-therapies with her physical and occupational therapists and they get her on her hands and knees and then have her pull herself up to a kneeling position, this wipes her out but is impressive to see. Her speech therapist has recently had her blowing out candles.
I am once again encouraging anyone that wants to visit Katlyn to PLEASE do so, tell her stories, read a book, play a game, watch a movie. I have Katlyn’s cell phone and will respond to your texts. These visits are therapeutic. It has been a year since the accident and know that many have moved on but I ask for you all to just take a minute out of your day to say a little prayer for her and others that continue to recover. Pray for her continued recovery and the strength to keep climbing.
Wants to thank absolutely EVERYONE in this past year who has made a difference big or small in all our lives. Thank you all so much for all the support and prayers, and all that you have contributed to Katlyn’s Climb to recovery. Whether it be helping out any number of Katlyn’s family with food, contributions, a helping hand, or just being a friend to help take our minds off things for a while. To all of our places of employment and those of you who have had to pick up the slack during our time of absence and to those of you who continue to visit Katlyn, thank you for putting her NEEDS above your own, I know it is difficult at times not to remember her as she once was. Thank you all so very much and to Katlyn you have brought so much to all of our lives, we love you so much and know that you will continue to climb.
P.S. In case you haven’t yet gotten a chance to listen to the new song on Katlyn’s website take a minute to listen. “What faith can do” by Kutless
http://www.youtube.com/watch?v=7elxC8LXfzE
I have been racking my brain to find the right words to express how Katlyn is coming along. She is a fast learner, when given new tasks to complete it only takes showing her a few times before she can do it independently. Katlyn’s days without therapy are soon to be over. We had a meeting at the school last week and they will be providing Katlyn with a teacher and therapists. Katlyn’s days will soon be filled with 4 hours of therapy, an hour each of PT, OT, speech and a teacher 5 days a week, which is 11 more hours a week than she gets now. I can’t wait to see the effects of how this will help in her recovery. This next year is key in her recovery as they say the first TWO years are the most important, that’s not to say she won’t continue to make progress after two years but studies show TBI survivors make the fastest/most recovery in the first two years.
Katlyn is doing really well, she is still non-verbal but she has become much quicker and more accurate in her responses. Although, she still has no control over the right side of her body, at times her therapists feel her muscles contract or see some voluntary movement in her arm or leg.
I very much love seeing her personality come through when she goofs around. For instance, when her Occupational Therapist was trying to get her to pick up rings from the left side of her body and stack them on a post on the right side of her body, which help with eye-hand coordination and range of motion, with a great big smile she ever so carefully balanced them on top of her stomach. It’s times like this that we’re reminded she is a 16 year old teenager with a mind of her own. She has been able to enjoy some of the things that use to bring her such joy like going to the mall, going out for ice cream, pixie sticks and most recently going to spend a couple hours at her dads house. What a smile we got when we asked how it was to FINALLY see her dogs.
P.S. For those of you who visit the actual website, you can receive posts via e-mail by entering your e-mail address in the “subscribe to feed” to the right of the website.
Hope everyone had a great Easter weekend, it was great to spend it at home with family. It was a much needed visit for Kate who overtime becomes depressed and ready to give up. Luckily, this is usually short lived and she snaps out of it relatively quickly. I was reminded of how far she HAS come in the last 4 months. I saw more of her personality this weekend than I have in months. It was great to see the playful side of her and since her visit with family her spirits are up and she has done an incredible job in her therapies.
What’s new with Kate you ask?
- She is becoming more interactive with the people around her and able to participate in games such as UNO.
- After weeks of researching and looking for a van accessible for Katlyn, we finally found one suitable for her that’s already all pimped out with tinted windows and pinstriping .
- Electrical stimulation to help strengthen the muscle in her right leg. It is great to see that leg in motion. Kate thought it was pretty funny when her therapist hooked me up to the unit so I could experience how it feels (not good), hours later it still felt as though I’d pumped iron, I think they both had a little fun with me.
- 7 months later, she’s cashing in on her 16th birthday present. I promised her she could have a massage for her 16th birthday when she woke up and was feeling up to it, so we are bringing the Spa to her. Today we are having our first annual Spa Day 2010.
- She hasn’t been able to vocalize on command in quite some time but she is learning that in doing so she certainly gets your attention, so I hope she keeps it up.
To Bailey: In answer to your question, is Katlyn still in a coma? This is a difficult question to answer due to not having anyone specially trained to test her on a weekly basis in months. My best guess is NO. Katlyn consistently is able to move the left side of her body to command, recognizes objects placed in front of her and is able to reach for and grab them, she can apply lip balm, bring the toothbrush to her mouth, independently drink from a cup and/or feed herself, sadly she can only answer yes and no to questions at this time via a button but at least it is a consistent means of communication and through all this she stays awake no longer falling asleep. Katlyn still has so many hurdles to overcome but she has made great strides.
Top of the mornin to ya, Happy St. Patrick’s Day! Well we tried but the stars just weren’t aligned, we were unable to get Kate admitted to a rehab. We were discharged Monday night and all our previous services are now in place and she has already received physical and speech therapies. She still battles headaches on a daily basis but appear to be better controlled but she doesn’t seem to be as sleepy. Thanks for all your continued thoughts and prayers.
Surgery went well! Katlyn is still dealing with a lot of headaches but we hope it is just related to the surgery and will soon be a thing of the past. We have seen more of Kate shine through today, smiling and showing us her sense of humor. We are still here at the Golisano Children’s Hospital awaiting a consult from 2N rehab. As much as we have had enough of hospitals and rehabs in the past 9 1/2 months we believe it is best to try to get them to restore as much function as they possibly can while we have a diagnosis that could have affected how she recovered.
To Katlyn’s many supporters: We are all still attempting to get a routine down here at home and FINALLY receiving some outside help. Katlyn continues to progress slowly but consistently and appears to be making progress despite the diagnosis of hydrocephalus. She continues to push forward in spite of consistent headaches and increasing drowsiness. She is doing very well and answers questions appropriately with her “yes” ‘no” buttons. Her speech therapist has been working on picture and word identification. She absolutely LOVES anything involving having to show what a bad a$& she is (ie. arm wrestling, thumb wrestling and sparring with her step-dad, Jimmy). Hugs are her specialty and BOY do they feel good and most recently telling people “I love you” with her hand via sign language. Katlyn will be undergoing, what we hope will be her last surgery on Thursday for a VP shunt to drain the extra fluid in her brain. It is our hope and belief from her doctors and therapists that relieving this pressure will speed her therapy along further.
We also want to wish Taylor Farewell and GOOD LUCK in the next few months as you embark on a new chapter of your life, may this last year have given you the strength to get through it. Make us proud and I stand by my promise to Kate if you ever make your way to NYC for “fleet week” we’ll be there.
No, we have not stopped giving updates! I am trying my best to get a routine down and just when I think I got one, something changes and throws everything out of whack. Kate will have been home a month tomorrow and we have yet to have shift nursing in the home, but I think there is an end in sight.
Katlyn made some great gains in the first two weeks of being home but complained of a lot of headaches, it turns out she has some added pressure on the brain due to increased fluid in the ventricles. Katlyn will be undergoing another surgery within the next couple of weeks to permanently drain this fluid. The neurosurgeon seemed to think if she was doing well then relieving the fluid would only help in her recovery and maybe speed things up a bit. She just loves to see if she can accomplish new tasks. Today I was brushing her teeth and she took the toothbrush out of my hand, smiled and put it in her mouth. Later, she did the same with my drink. I asked if she wanted a “sip” of my soda she grabbed my glass sooo fast and drank the rest of my drink. We laughed about it when I told her I wasn’t thirty anyhow.
On a different note: I need to ask all my Kate followers for a little help. All your thoughts and prayers have helped her so much, that I need to ask if you can add her cousin Joe to your daily prayer for her. Katlyn and Joe were very close growing up and last weekend on his 16th birthday he injured himself in a snowboarding accident. We are hoping for a full recovery.
