5/06/04 thru today | 1/04 thru 5/05/04
| 6/03 thru 12/03 | 1/03 thru 5/03
|
6/6/03 - Kyle is once again battling an infection in his blood. In addition, he has another urinary tract infection. Despite all this, Kyle continues to battle on.
Kyle's tentative release date from Brooks Rehab is June 14th - however, the family and doctors are hopeful he'll be able to remain at Brooks for at least another 4 to 6 weeks to continue rehab. His rehab has been slowed to nausea and other complications related to the infections. Upon discharge from Brooks (whenever that is), there is a chance Kyle will be admitted to a Shriners Hospital (in Philly) where he'll be able to receive additional treatment.
Kyle's attitude, somehow, remains positive (his new goal is to be back at school in the fall). He continues to battle odds that most couldn't begin to imagine with an upbeat outlook. He's an inspiration to everyone that comes in contact with him.
6/19/03 - Kyle's blood infection doesn't seem to be problematic so they are just watching him and not treating it with antibiotics yet. Unfortunately, while doing all the tests to find the source of the infecion they found on an MRI that there is a syrinx (a cyst they think was caused from the trauma of the accident) on his spinal cord. We are now waiting to consult with a pediatric neurosurgeon from Shands in Gainsville at the University of Florida. They are concerned that this disorder called syringomyelia will cause the cyst to expand and elongate, destroying the center of the spinal cord and can then cause loss of function in that area of the spinal cord.
6/23/03 - Shands and the pediatric neurosurgeon want the new CT scan and MRI to be sent to them for evaluation and hopefully
we will hear from them about an exam and consult for Kyle down in Gainesville. The neurosurgeon feels by what our Dr. has said Kyle's symptoms
are that so far the syrinx( cyst) is not an emergency thing, but we watch him
closely. On a lighter note...Bruce spent the weekend with Kyle and his buddy
Russell, and they went out to dinner for lobster Saturday night, it was a boys'
night out with brother Ray joining them. Kyle is one special guy with amazing
strength of character and a great attitude.
6/30/03 - Thank you so much for your prayers, love and support! The pediatric neurosureon evaluation is that he wants another MRI on July 22 - 6 weeks from the initial MRI (June 10th). Kyle will probably be released from Brooks by then, and will probably go home for 1-2 weeks until the visit to the neurosurgeon in Gainesville to decide if he needs surgery or if they just want to watch the area. Surgery, if necessary, on his spinal cord will be at Shanes Hospital, Gainesville. If not necessary, Kyle will head up to Philly for some more intensive rehab. While the family is in a kind of in limbo right now, Kyle still has a great attitude and is working hard at his rehabilitation. He just
recieved his power wheelchair (courtesy of Blue Cross Blue Shield) and is enjoying having four wheels and a power source. His mom thinks he needs an
governor on that machine but you know how mothers are....
7/10/03 - Release date from Brooks is July 18th, however, the appointment with the neurosugeon in Gainesville isn't until August the 12th, so Kyle is on hold for Shriners until the prognosis is in for the spinal cord cyst (syrinx). Marie has located a doctor in Eustis that has experience with pediatric spinal cord injuries and she is hopeful that he will lead them to physical therapy that has experience with quadraplegia. Naturally, even though Marie could probably qualify as a nurse in the area of spinal cord injury, she feels much better knowing there is expert help locally. They need your prayers even more as they face the unknown of going home together for the first time in over 6 months!
7/18/03 - KYLE IS HOME!! 8/1/03 -
Now that we are home, our schedule still includes physical and occupational
therapy at Leesburg Regional Medical Center outpatient rehab. Kyle has a male PT ,
Glenn who worked rehab in Canada, and Jodie is his OT( she just so happened to
work at Brooks years ago with Kyle's OT Karen. Great place and we are blessed to
be there! 8/13/03 - Dr. Pincus - the pediatric neurosurgeon in Gainsville gave great
news: NO SURGERY IS NEEDED!!! The cyst has healed and after viewing the many
MRI's, he feels that Kyle is good to go to Philadelphia! We do have to run some
bladder scans first at Arnold Palmer hospital in Orlando to learn how to better
manage bladder functions. One other surprise - Kyle, on the Dr's command, lifted
his right heel about 2 inches. We all just looked at each other in shock! The
Lord has given us a great day to share with everyone!! Thank you all so much for
your prayers, love and support!!!! |
8/27/03 - The news we have been waiting for...Kyle and Marie leave for Philadephia Sept 20-26 for an overall evaluation of his condition! Shriners will assess all areas of his health, functioning ability, wheelchair, everything that has to do with his condition. Kyle and Marie will then return home while they will set up whatever will help Kyle most like FES( functional electronic stimulation) for his legs to move them, or tendon tranfer surgery for his hands to get more grasping ability. They (Kyle and Marie) will then go back for whatever time frame they require, hopefully not too long. Kyle is not yet enrolled in school, but Marie is working on getting that resolved before they go up north. Therapy is going well, Kyle transferred himself from his chair to the mat with no assistance today! Yahoo. Glenn the PT was impressed. Thank you all so much for your prayers! 9/22/2003 - Kyle and Marie flew to Shriner's Childrens Hospital in Philadelphia, PA last Saturday. They had a 4 hour delay in Orlando because of engine problems, and finally arrived at 10PM. Yesterday was mostly spent getting familiar with the facility. The testing and analizing of Kyle's injury starts today. Check back later in the week for another update....
9/23/03 - Hello from
Philadelphia! Just a little update from Shriners---we have just started
evaluations by a bunch of different doctors and therapists. As it stands our 2nd
day, they have ruled out the FES therapy(functional electronic stimulation).
Kyle needs to be a T1 level injury with no movement in his legs, he is a C7 with
movement so does not qualify. Also the procedure requires surgical implantation
of the electrodes under the skin of the legs and trunk, not a big turn-on for
Kyle. He is a wonderful candidate for tendon transplant surgery on his hands.
They will be assessing him more for that surgery this week but they will
probably wait until a year after the injury to do the surgery to give his body a
chance to get back as much as possible. We are truly blessed to have this
oportunity, we are grateful to the Bahia Shriners Temple in Orlando for
sponsoring us. Thank you for your generosity. I will keep in touch, keep us in
prayers, 9/28/03 - Kyle is home from Philly! 10/14/03 - We are home for 6 months until our next evaluation with Shriners. It is a load off to know we are home for the holidays. Kyle is doing well but we are having some problems with spasms and the medication needs to be adjusted slowly because it causes low blood pressure. Kyle has low blood pressure now and reacts to medications so we are cautious. While we were in Philly the Drs. there wanted a CT scan and Melogram done on Kyle's area of injury (C-7) we have not gotten a report from them yet, they are suppose to evaluate it with the June and August films. Kyle had a scare the other day....he lost sensation in half of his arms and hands. He could not feel touch but he could feel pressure and still move arms and fingers. Thankfully the sensation returned the next day, could be syrinx related but we see our Dr. here tomorrow and hopefully he has some reports faxed from Shriners. Well got to get on the road to rehab, Kyle goes 3 times a week now and is getting much stronger. He is in school again and has a teacher come to our home 3 times a week for 2 hours each session. Please continue to keep us in your prayers. 11/13/03 hey everybody!thank you so much for your prayers and support, it truly is what keeps me going. when i have my downs i look at how far i've come and all of the support i've had. recently i just took 32 steps, a new record for me.i just want to say to everyone thank you and that nothing is impossible or too far out of reach if you want it badly enough, i know that now. thanks, kyle 11/22/03 - Kyle's grandmother Vivian Ferderber passed away. she lived 85 glorious years and will be missed. 12/03/03 - Wishing our family and friends an improved, free from stress, strife and illness, looking to the light, blessed, happy new year!!!
Kyle is looking forward to starting school 1 class a day in January. He also
has a new standing frame at home he uses 2-3 hours a day, it is great to see
him upright. He is also going to be using a electrical stim. bike 3x a week
(just like Christopher Reeve). We have not given up hope
for Kyle's recovery, he has sensation in his legs and feet and can move them
alittle. Dana just got her braces off her teeth and looks beautiful. Bruce and
Dana are leaving Jan. 3rd to ski in Steamboat Springs, Colo. with brother
Brian. |
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