Hello to all
A belated Happy 4th of July to all, hope your holiday
and weekends have been good. Jayden
responding to the Cochlear ear implant, he has been
imitating a few sounds and tones. We are on the road
hearing again, it will be slow, but we are getting
there. Jayden & I spent the past 2 days at New York
Hospital for an overnight EEG to check
his seizures, just the guys hangin out. The Doctor has
noticed a little calming
in his overall seizure
activity which is great! Jay is still showing some
signs of small seizures breaking through again
fell down down last week because of one. So once again
we must watch him like a hawk. But with some more
work over the next week the Dr, Leary hopes to
change his seizure meds a little to straighten Jay out
again. It could
just be due to his weight gain and
growing. Jay & I had a very nice surprise today while
leaving the hospital, we met
comedian Bill Murray who
came over and spent a few minutes with us. A very
nice, funny man who also does a lot of charity
the Presbyterian Hospital. Mr. Murray also told me
when he saw Jayden's Spongebob shirt, that his brother
the voice of the "Flying Dutchman" on Spongebob,
one of Jay's favorite characters. Once again a very
special man who
spent some time with us just making us
laugh, thank you Mr. Bill Murray. Jayden also started
a new School in Mountain
Lakes for the Deaf & Hard of
Hearing, it seems like a great school and Jayden
really enjoyed his first day. The staff
Classmates seem great. Jenny & I are so proud of him!
His sprit and attitude are wonderful! And of course
is being a super big brother! Thank You all for your
continued prayer & support. Love ya Andy, Jenny,
Just a quick update since its been a very busy summer so far. Jayden is doing
very good with the Cochlear ear implant. He is recognizing sounds, and responding to some. He can imitate some tones. He seems
very excited when he hears at times. Jenny & I are just doing repitition with him, and he now repeats the words "pig" and
"rabbit" although rabbit is babbit but he trying so hard. He had another mapping today for the ear implant at NYU, and is
really listening more and more. The summer program at Lake Drive School for the hard of hearing & deaf is great for Jay. They
are doing some wonderful things for, and with him. Jenny & I and I think Jay all love the school and the staff. Jayden's seizures
started to get a little worse again, but with med increases of the Felbamate he is getting better. The increase has thrown
him off a little, and caused some more insomnia. We have noticed Jay's playing is more purposeful and focused. He is using
his right hand almost as much as his left now, almost fully overcoming the paraylsis!. We have noticed and the school pointed
out how creative Jayden is, its amazing what he does some times. And of course he continues to be the best big brother to
Dakota. Jay has no school for the month of August so hopefully we will just take some nice family trips to the shore and play
on the beach. Hope you are all enjoying your summer so far! Love Andy, Jenny, Jayden & Dakota
It has been a couple of weeks since we have done an
update, sorry but we have been busy just trying to
the summer. Jenny & I have been taking Jayden to
some fun places like Chuck E Cheese, Bowcraft Amusment
Park and just
places where he can enjoy himself. Like
most of you we have also had to get ready for school.
It will be difficult but
Jay will be going full time
at the Lake Drive School for the Deaf in Mountain
Lakes. It has been tough the past few
Jayden's seizures are getting stronger and some days
more frequent again. He has gone up, and will go up on
Felbatol to hopefully help. Jay has had a few
myoclonic seizures again where his body locks out and
he looses his breath
for a short time. It is
frustrating for us all to be going backwards with the
seizures again, but we will control it
again. We are
back to constantly holding onto Jayden for his safety,
he has taken a couple of hard falls due to the
and banged himself up. On a good note he is
responding well to the Cochlear implant, Jay is really
trying to imitate
sounds and words. It will just take
time for his brain to figure it out, and when he goes
back to school they will really
work with him. Jayden
has been also been a very big help with his little
sister Dakota. He enjoys playing with her,
his toys, and helping us with her. He is a great big
brother! We hope you all have enjoyed your summer as
comes to close already.
Love Andy, Jenny, Jayden & Dakota
****PLEASE CHECK OUT THE UPCOMING EVENTS
PAGE FOR INFORMATION ON THIS YEARS MENINGITIS WALK-A-THON. PLEASE JOIN US!!!!****
SEPTEMBER 18, 2006
morning to all,
Well our first week a school was overall good, but did not start out that way. The first day Jayden had
a very rough day adjusting and was almost uncontrollable, and uncoperative. But by the second day he got into the groove.
It is a long day for Jayden, but thankfully for Jay's teacher Ms. Hofbauer she is letting him go at his own pace. Jayden seems
to really enjoy the school, teachers, aides, and new friends. Unfortunatley Jay starting running a fever last night and woke
up this morning still with a slight fever, and just not himself so he stayed home to rest. Hopefully he will be better tomorrow
and back in school.
Yesterday on Sunday Jayden & I(Andy) went for a very nice walk in Garrett Mountain, he did great
walking through the trails, I supported him at all times. He really had to concentrate on his walking over the rough terrain
and did a great job. He really enjoyed the scenery watching the water running through the small streams, we saw a lot of wildlife.
We sat by the pond and just watched the ducks for a while. Jayden was very calm and relaxed, it was very nice.
is interacting with his little sister Dakota so much now. Yesterday he was sitting in front of her using sign language to
tell her about our trip to the park. He really enjoys spending time with her and showing her toys, and trying to get her to
play with him. And soon she will. Dakota just lights up when she sees Jayden, and loves to watch him doing things. We are
so proud of what a great big brother Jayden is! We are also very very very proud of how Jay is doing in school!
seizures are a little better but still there. Some days are better than others. We are still adjusting the meds, and hopefully
soon we will have them under control again. But in the meantime we watch and hold onto Jay at all times. Jenny & I try to
let Jayden do as much as he can by himself, but we must be so carefull with the seizures. The most important thing is that
Jay just enjoys himself as much as he can.
Thanx for your continued prayer and support! Love Andy, Jenny, Jayden & Dakota.
Just a real good quick update.
Jayden was in the bathroom and his sister was in the next room crying. All
on his own Jayden signed that he heard the baby crying. He is amazing! -Luv ya all Andy, Jenny, Jayden & Dakota
We had our walk yesterday and it went really well. It
was grerat to see our angel friends.
The weather was
really comfortable for walking. Thanks to all those
who donated and continue to support the Meningitis
You can donate to our organization at any time
Jayden is doing great in his new
school. He has a
wonderful teacher and some really nice aides working
with him. He likes it a lot and looks forward
each day. We've seen some really nice changes. Jayden
has been initiating more with his right hand and his
has improved so much. He's still vocalizing
and can mouth certain words.
His seizures have been increasing so we
his Felbatol a bit and this past Friday we went to
another seizure doctor to get another opinion. We
her very much and she has given us some options.
In November, Jayden will go for an EEG at NYU and
there are other tests
that can be done, which were
brought to our attention. She gave us so much
information. Jayden's seizures may be coming
particular area of his brain. An eeg may not
necessarily pinpoint where but the other tests that we
do, can determine that. We had not been told about
these other tests by any other doctor. We really like
she is. We're hoping she is the one
who can finally control Jayden's seizures for good.
We're praying that she has the
answers that the others
Jayden will also be getting his adenoids and tonsils
removed after Thanksgiving.
He has been snoring really
bad, which has interfered with his sleeping, so
unfortunately another surgery. His enlarged
and tonsils can affect his seizures, his speech, his
hearing and sleeping. They need to come out.
he'll improve in all areas that might be
affected. This new doctor we saw, suggested a sleep
study on Jayden as well,
before his surgery to have a
baseline. After surgery, we can do another to see any
Other than the
annoying seizures, Jayden is enjoying
this time of the year. He loves the creepy decorations
outside the house and can't
get enough, the scarier
the better. His favorites of course are Dracula,
Frankenstein and Wolfman.
is well and we'll keep you posted on
Love & blessings,
Andy, Jenny, Jayden & Dakota
A Belated Happy Halloween to all! Be sure to check out our Halloween pic on the newest pics page!
spent 3 days at N.Y.U. checking on Jay's seizure activity. We are going to be trying a new med Triliptol, and decreasing his
Frisum. We will also be looking into the option of brain surgery in the future. We will have a lot of testing over the next
few months to see what is happening. Stay tuned!
If your into great Jazz music check out a friend William Woods at www.williamwoods.net
or http://www.myspace.com/williamwoodspiano He is a great muscian and even a better person, 50% of profits from his CD
will go to Habitat for Humanity.
Luv ya all, Andy, Jenny, Jayden & Dakota
So sorry for
the delay in updates. We've been a bit
overwhelmed these days. Jayden went to NYU on
Halloween and was there for 2 days.
His new Dr. wanted
to determine if Jayden's seizures come from one side.
So far, it appears that the seizures are coming
the right side. She has decided to slowly drop one of
his meds (clobazam) and add another Trileptal, for the
seizures. Jayden, as usual, was a trooper and
cooperated very well.
We had planned a Disney trip for him for the
of November, but decided to cancel when we saw
Jayden's seizures worsening. So, we'll go when Jayden
truly enjoy it and not have so many restrictions.
We also cancelled Jayden's tonsil and adenoid surgery
is off some of his medications. Anesthesia
with all the meds that he is on, is too much for him.
We'd feel better when
the meds are reduced. Possibly
by February, we can reschedule.
Jayden has also had a sleep study done and he has
sleep apnea, which confirms that he needs
to get the surgery. Once the surgery is done, it
should improve his sleep
and breathing significantly.
His seizures can also improve as a result. Jayden is
now taking an iron supplement to bring
level up. The iron level in his blood is 18 and should
be about 50. This also interferes with sleep (which
common in people with sleep disorders). His level will
be checked again in 3 months.
We are currently trying
to set up a MEG scan on Jayden
which records brainwaves in a machine which resembles
an MRI machine. This scan can pinpoint
a closer area
where the seizures may stem from. The delay and
concern is the fact that Jayden has a magnet from his
implant which may cause interference with the
scan. We will attempt to do the scan anyway and see if
it is possible
to get accurate readings with the
magnet. If it cannot be done, a PET scan is the next
step and eventually brain mapping.
this doctor can pinpoint exactly where the damaged
area of the brain is that causes the seizures, surgery
may be an
option. As scary as that is, it may
eliminate most of if not all of the seizures. This is
where we are at now and we'll
see what happens as we
get closer to finding out more.
We've just been a little busy :)
Other than all that,
Jayden is doing well in school.
Still vocal and great with his little sister, Dakota,
who is doing wonderful too. She's
babbling alot and
very close to crawling.
Hope you are all doing well. We'll send another update
as soon as more
information is obtained.
Thanks and god bless.
Andy, Jenny, Jayden, and Dakota
6TH BIRTHDAY JAYDEN!!!!!!
Check out the B'day pics.
Luv ya Andy, Jenny, Jayden & Dakota