hello all, sorry its a been a long time for an update. Things have been rough with Jayden over the past few months.
He has been sick with stomach issues and not feeling to good overall. This past Saturday Jayden began vomiting and we came
to Hackensack Hospital for the second time in 2 weeks. They were unsure what was causing the vomiting and discomfort so he
was hooked up and monitored in the epilepsy monitoring unit to see if his seizures were the cause. It was determined it was
not a seizure issue. Yesterday after a upper GI it was found Jay was born with mal-rotation of his intestine. Basically his
stomach is wound backwards and kinks up and closes up. Tommorow the Dr will correct this problem. At the same time he will
perform a fundoplacation on Jays esophogus to control very bad reflux he has. 2 serious and painful surgeries. But we know
this will make Jay feel better and get his appetite back and make him more healthy. He is a trooper as always and in good
spirits. I will let you know after the surgery how he is doing. We will be in the hospital for another week or so. Please
keep Jayden in your thoughts, prayers, light a candle and ask your favorite Angels to watch over him. Thank you. Love you
Jayden had his surgery today and once again our little boy keeps everyone on their toes. When
Dr. Alexander got into Jay's stomach to fix the mal-rotation he found a few other problems. He said Jay had an enlarged colon,
and there were some other organs and intestines in the wrong place and mishaped. Jenny could tell you better, when he started
to us all the problems and complications I almost passed out (what a little girl I am LOL) But the doctor accepted the challenge
and did his best to correct every problem he encountered. He also performed the fundoplacation to correct his reflux without
any problem. Jay is and will be heavily medicated in the PICU for a few days. It is a painful and slow recovery but the doctors
and us all know he will do just fine. Jay woke a few times so far and his stomach wretches. But we still got a few smiles
from our little hero. That little man has been through so much but his strength and spirit are amazing. He will be fine and
this will help him to get and feel even better. A very special thanks to everyone at Hackensak Medical Center Children's hospital,
they are making us feel right at home there. I haven't slept in days, or showered (good thing you can't smell via email) so
good night to all. We will keep you posted as to the progress of our little miracle.
Thank you, Love you all -Andy
Well yesterday it was 4 years ago that Jayden got sick with meningitis. It has been quite an
experience since that day. There have a lot of ups and downs, but most importantly Jayden has been amazing through everything!
I look back in our journal and read so much that Jenny and I have written. I have forgot so much, or my mind has blocked out.
The one constant is Jayden always surprizes us and the Doctors with everything. With his latest surgery Jayden is recovering
very well. He is still having some pain and discomfort but doing good. He has been so happy and laughing and smiling these
past two days. He just feels good. His seizures have improved incredibly and are almost non existant, due to the fact his
stomach is now working properly and absorbing the meds correctly. We are very optimistic in his recovery, we are seeing some
great things these past few days. I wish to thank all of our family and friends, supporters from the emails, from the website,
and all of my Myspace friends. Jayden is doing great and will continue with all of your continued prayer and support!
ya all ;)
*****MAY 14, 2008*****
Check the Home page for a new pic of
********DECEMBER 15, 2008*********
hello to all. I know its been since April 7th the last update was sent. That was the 4 year anniversary of Jayden getting
meningitis and this roller coaster ride began. It has been a tough time. Since our last update Jayden was doing quite well.
We believe due to the healing from his brain surgery last year and the stomach surgery. His stomach was now absorbing the
meds properly and his brain seemed to be healing. Jayden had a very good stretch of about 3 months with almost no or very
little seizure activity. It was such an amazing time to just let him be a kid again. He was walking and running around on
his own, playing and just being silly with his sisiter. His confidence and focus was great. And then around the end of August
we started to see more signs of seizures and had to start watching him like a hawk again, and holding on to him 24/7 for his
safety. He did not like constantly being held onto again but we had no choice and the seizures got worse and stronger once
again. We have had a few hospital visits since April, a few to Hackensack hospital for dry-heaving issues which more than
likely were just stomach bugs. Jay also spent a few days at NYU hospital in October for a video EEG and Jayden was eating
very poorly and having a lot of dry heaving. We have been changing and adjusting his meds, when we bagan to drop his Felabtol
at the end of the summer, the seizures got worse. So it was increased back but seemed too late. When Jay had the video EEG
it was determined that the seizures were partial only on the left side. The doctors were pleased to see that the seizures
were partial and not generalized. His seizure patterns overall have improved. The anti seizure drug Tegretol was added but
it did little or no help. We are now weaning him off tegretol and have added Klonopin as a buffer. His seizures seem to be
getting worse and stronger. Even through all of this, Jayden has been showing some great improvement with his writing and
speech. He is trying to write a few letters of the alphabet and is now drawing stick figures. He is really trying to get more
words out and his imitation of sound is very good. It seems to depend on how the seizures are effecting his focus. Jay's little
sister is probably his greatest teacher and inspiration. Dakota is pushing him to do more things and she is little firecracker!
They have their issues with sharing and stuff, but that's what siblings do! Jayden's doctor feels we should try a new seizure
med just approved by the FDA called Rufinamide. It will be available sometime in January we hope. The new drug will be tried
for a few months and hopefully will help him. His case is back in discussion for more brain surgery if the new med does not
work. We will stay focused and see what happens and we are here for the ride. Jayden also just celebrated his 8th birthday
on the 10th! Sorry for the delay in updates and I know I missed a lot and rambled on. Please let us know how you are all doing.
Thank you again for all your continued prayer and support.