Its been a while since we
have sent an update, but we have been busy. Eveyone is fine, as we hope all of you are. A Belated Happy New Year to all. How
was all of your holidays? We had a good one, Jayden & Dakota got some great presents and enjoyed opening presents, and of
course playing with them!
We have had a bit of a rocky road with Jay's seizures. With the changing of the meds, adding
Trileptal and decreasing frisium was rough for Jayden. His seizures got much worse, but are now getting better, plus he had
a cold which threw off his system. We even ended up in St Joe's Hospital monday night for 24 hours due to Jay vomiting. They
had to make sure his shunt was OK which it was. It wasn;t much fun spending a night in the hospital again, but we were in
the PICU and got to see a lot of the Doctors, nurses and staff who took care of Jayden nearly 3 years ago. They are truly
an incredible bunch of people, and we love them all. Thank you again for taking such great care of Jayden, and us again. Jenny,
Dakota & I all have a cold but are slowly getting better. This crazy weather isn't helping either. But overall we are doing
good. Jayden missed a week of school, but I'm sure will be very happy to get back in next week.
We also got very good
news while in St. Joes Hospital. Jayden needed a CAT scan to make sure everything was good. Dr. Anderson at St. Joes who
is partners with the Doctor who performed Jay' s shunt surgey saw the scans and told us that Jayden's brain looks better and
more importantly his ventricles are smaller that the last scan from March of 05. This means the shunt is working fine and
Jay's brain is still healing and doing very well.
Jayden and his little sister are really forming a great bond and learning
from each other. Well gotta go we are watching Jay's new favorite movie Monster House. Jenny and I know the movie word for
worn now. Jayen acts out the scenes, and Dakota sings along, we are all so talented!
Love Andy, Jenny, Jayden & Dakota
As my father's 2 year anniversary of his death approaches on the 28th
this month, we are hit again
with yet another tragedy. My handsome,
wonderful brother, John Velez, Jr., was taken from us last night very
Please pray for us especially his wife, who is going through
her own serious health problems.
We are all deeply saddened
and will miss him so very much. He was a
caring person who had one of the best smiles. He will always be in our
and he will forever be Dakota's godfather, in spirit.
John Velez, Jr
January 23, 2007
can see a pic of John on the Newest pics page)
Well, it hasn't been dull these days. Jayden has
us quite a few scare but hopefully we are on the right
path. We have noticed that Jayden has not had the
appetite and seems to be suffering from
indigestion quite a bit the past 2 weeks or so. He has
also had an increase
in seizures. So 2 of his meds
have been increased since his levels were not high.
This past Wednesday, he gave
me quite a scare while
driving him to school. He had a seizure and seemed
really tired. After a short nap he been to
cry a bit
like he was in pain. Since I was close to his school,
I took him to the nurse where she agreed that Jayden
not look well. He was pale and his breathing a bit
shallow. We decided it was best to call the ambulance,
get him some
oxygen and take him to the local
hospital, Saint Clare's in Denville. Once we arrived,
they administered a dylantin-type
drug. He was having
seizures which really knocked him out. After a CAT
scan was done, which came out fine, he began
After a couple of hours at Saint Clare's and some
nausea medication he was ready to be released but we
comfortable with that decision and had him
transfered to St. Joe's. He was immediately put in the
PICU step-down unit
and greeted by our favorite nurses
and St. Joe staff. Dr. Debruin had big hugs for Jayden
and the atmosphere immediately
put us at ease. Jayden
continued to vomit despite the nausea meds. He had a
stomach x-ray to check the shunt tubing,
fine. We weren't sure if this was a stomach bug or
medication related. After 2 days of great care, we
Saturday morning comes around and Jayden vomits again.
He was immediately taken to St. Joe's emergency
the best ER doctor we have ever dealt with, Dr. Farid
Naim, was determined to send Jayden home well. He had
CAT scan done and another stomach x-ray had been
done. He noticed that Jayden's bowels were impacted.
everything. After a good cleaning out
:), Jayden was perked up ready to eat and sent home.
Sunday was a great day. He
had very few seziures and
he was himself and enjoyed eating again.
He's still not 100% but he's getting there.
process of all this, we are scheduling a PET scan and
a neuropsych evaluation to determine where the
are coming from.
Unfortunately, we tried a test run for a MEG scan
which would accurately pinpoint the seizure areas,
due to Jayden's cochlear implant, there was too much
inteference. So, it was really disappointing. But it's
to know we still have options and we are
determined now more than ever to get to the bottom of
these seizures and help
Jayden with whatever has to be
With faith, prayers and a whole lotta luck we'll get
thanks to Andy's wonderful warrant squad
partners who are always there for us, to my mom, who
drops everything to help
us with Dakota and our
wonderful friends and family who always call and
e-mail with concern.
One quick note,
congratulations to my beautiful
cousin, Lianna, from PR, who came in 3rd place at her
science fair. Her topic was meningitis
awareness. We're so proud of you.
Love & blessings to you all,
Andy, Jenny, Jayden, and Dakota
Happy 1st Birthday Dakota!
You can check out new pics on the PhotoShow page, or goto http://www.myspace.com/jaydensjourney
Sorry it has been so long since the last update. There
has been lots going on. Jayden still continues to get
seizures a day. As a result, his Keppra has
been increased. Some days are better than others but
overall the seizures
remain difficult to control. It
is very frustrating. Jayden has also developed some
stomach issues. He ended up in the
vomiting in February due to the previcid prescribed to
him. He also had bowel issues. On the 14th of this
he saw a stomach doctor who recommended he take
a lactose pill and a prilosec for reflux. He tolerated
the lactose pill
and we have seen improvements. His
appetite has been a bit better. Last Saturday, we
tried the prilosec. The following
day was a repeat of
the previcid incident. Back to St. Joe's for vomiting.
He was kept for two days for observation
malfunction was also a concern. Andy and I strongly
felt it was a drug reaction. The stomach doctor
She said that it wasn't uncommon to have that
kind of reaction. So, he now takes Axid ( a
pepcid-type antacid). Not
very strong, but effective
over time. Jayden was as usual, a champ through out it
all. So we now know that he cannot
tolerate drugs like
previcid and prilosec. His appetite has been ok and
we're hoping to put some weight back on that
He has become extremely picky with eating so it has
been a challenge.
Regarding the seizures, Jayden
is still waiting to
have PET scan done but had his neuropsych evalutation
today. Thanks to his wonderful aide, Matt,
kind enough to come with us to NYU. He works with
Jayden in school and teaches Jayden to sign. He also
how Jayden is in school and was able to give
information in that respect. He also was Jayden's
interpreter. Thanks to
him, Jayden's eval went really
well. We'll get the results in a couple of weeks. Andy
felt the Dr. was impressed with
Jayden. We'll see. If
Jayden is a candidate for surgery, he would be tested
again afterwards. The doctor said it's the
it's kind and would like to study Jayden for several
years. He could be a case study.
Once the PET scan
is done. The doctors will determine
if Jayden is a candidate for surgery. We're hoping
this works out. Jayden's seizures
appear to be
uncontrollable at the moment. We want Jayden to
progress without limitations. We're hoping that Jayden
finally enjoy life to the fullest. It is so hard
to see him try so hard and take steps back due to the
meds. All the prayers you can give would
really help at this time.
We'll keep you posted and update you a lot sooner.
care and God bless.
Quick message to my grandfather who passed away 10
years ago today. I love you Pop and miss
you as if it
were just yesterday. Continue to watch over Jayden.
Andy, Jenny, Jayden, and Dakota
Happy Easter! Check out the new pics on the photoshow page. It is the the 3 year anniversary of Jayden getting
sick. It has been a long road with still a way to go, but we are thankful for the road. Jayden is a miracle!
Pasta Dinner Benefit Fundraiser
the Jerry Speziale Community Outreach Foundation, Inc.
Date: August 8,2007
Place: St. Joseph's Hall
(St. Gerards Church)
West Broadway & Chamberlain Ave, Paterson NJ
For information on this event
Passaic County Sheriff's Department
Chief D'Errico 973-389-5911
Shirley Vega 973-389-5900 ext 203
more info check the upcoming events page
Where do I begin? It has been quite a while since the
update. Things have been a bit difficult. We have
not gotten the results of the neuropsych evaluation
yet. But, Jayden
did get a SPECT scan done. It showed
less blood flow to the left side of his brain which
coincides with the stroke areas.
The problem is that
his EEG shows more activity to the right side of the
brain. So, is the left side of the brain to
seize so the right side compensates for that by
picking up where the left side leaves off? Or is there
on the right side as well? This is the
question. To decide what will be done next, Jayden's
case will be presented to
a group of doctors who will
decide whether Jayden should get stripes or grids.
Let me explain. Stripes are stripes
which are slid down a hole onto his brain. They cover
sections of areas. After they do the stripes test,
must wait 6 weeks for Jayden to heal to do grids which
go onto the brain but the grids cover whole areas.
the grids, surgery can be performed at that
His doctor feels that they will most likely need to do
on both sides to make sure that the left area
is the area to concentrate on. Of course, putting a
grid on the left side
and operating would be a lot
quicker which would be great. So, we must wait until
the board meets and decides. We have
a feeling stripes
will be done first.
But since we cannot just wait until surgery to control
his seizures, his
doctor wants him off his trileptal
medication and has added zonegran. It's been about 5
1/2 weeks since this was added.
He's not having as
many seizures, but when he does they are strong and he
usually needs to sleep afterwards. We have
also seen a
change in his attitude at home. He's very aggressive
and hits when he's frustrated. He's also not sleeping
well. In school though, he's focused and
accomplishing his work and doing well overall there.
So as usual, the seizures
cannnot be controlled.
Jayden is currently in the hositpal for stomach issues
again. He was really sick Sunday night
Although he is not getting sick now, he's not eating
much or drinking much. He's getting IV fluids though.
yet another mystery. Is is a stomach virus? Is it
combination of meds? Is it reflux? It's so frustrating
to see Jayden
go through so much. He still manages to
smile and throw kisses at the nurses though.
Sorry so long. It's been a
while and a lot has
Please continue to pray for Jayden. His journey is a
long and rocky one but at
least he has a journey.
Love & blessings,
Andy, Jenny, Jayden and Dakota
Where do I begin?
I think the last update was left off at Jayden's stay at the hospital the day after mother's day. He was in the hospital for
a week. He didn't want to eat or drink so we didn't feel comfortable bringing him home. He was on an iv in the meantime. Nothing
was really ever determined as to why he was there. We thought maybe the new med he was on (zonegran) was causing the vomiting
and stomach upset. It was cut down by half. His stomach doctor also added a medication for cyclic vomiting, which is vomiting
caused by neurological issues. It also increases his appetite. She also wanted him to drink high protein, high calorie drinks.
This nutren junior drink is easier to digest for slow-to-empty stomachs. Jayden likes the drinks (thank God) and his appetite
has increased and he has gained 3 1/2 pounds.
Since we have seen no improvements in his seizures or attitude on zonegran,
he has been taken off the drug as of Friday, June 15th. In the meantime, we had an overnight stay at St. Joe's last Thursday.
He's fine and again no ideas why he has these bouts of stomach upsets.
Besides all that, Jayden's case was presented
in a grand round about 2 weeks ago and it was determined that Jayden would need to go to stripes. I explained stripes in the
Today, we met with 2 doctors. First was his stomach doctor, she is pleased with his weight gain and improvement.
We will be setting up a scope of his stomach to see if there is any underlying issues. We all agree that all the seizure meds
he has been on have taken a toll on his stomach. So as soon as it's possible, that will be done. The second appointment was
with the pediatric neurosurgeon that Jayden's seizure doctor works with. He was very nice and spoke in language we could understand.
No medical terms. He explained the stripes procedure. He will make 2 incisions on both sides of his head where the stripes
would be placed. Jayden would be in the hospital for about a week since his seizures are so frequent. With that information,
we'll know if surgery is an option. Jayden would need to take 2 months break before surgery could be performed after the stripes
are done. The man has done over 1,600 surgeries, 500 being epilepsy surgery. Of course, Jayden would be the first shunted
patient he would be performing epilepsy surgery on, if he's a candidate. Jayden is always unique in every way. He's optimistic,
although meningitis patients tend to have several hot spots on the brain from the infection. But if there is one area that
is predominately causing the seizures, he would still be a candidate. The surgery stay would be about 2 weeks. We're hoping
to get Jayden in for stripes ASAP!
It's a lot to take in and we're mentally exhausted but we're optimistic and hoping
we can help Jayden.
I'll try not to go so long between the next update. I've attached a pict of Jay and Dakota.
Andy, Jenny, Jayden and Dakota
Quick update: Jayden will be getting brain strip
surgery Thursday, July 19th. I'll update you with
as I know it. Tomorrow will be a long day
as we need to be in the hospital by 6:00am. We'll be
there for about 7 -10
Please, please, please pray for Jayden and for the
surgeon. We hope to get good news and move forward to
epilepsy surgery 2 months later.
I know it's inconvenient for most to travel to NY, but
we'd love to see some familiar
faces if possible.
We'll be at NYU on 550 1st Avenue. I believe he'll be
on the Peds ICU floor.
Thanks for all
the support and prayers!
Andy, Jenny, Jayden, and Dakota
I'll keep this brief. It's been a long day.
Because Jayden is such a unique case, instead of
the surgeon did grids instead. So, this is all
good news. If they can determine the area causing the
seizures or the
the area causing the most seizures,
Jayden can go to surgery. So God-willing, Jayden won't
have to wait 2 months or
so to have the surgery.
It's was a hard day for all of us. Jayden was ill from
the anesthesia and also in pain.
It broke our hearts
to see him suffering. His head is wrapped with 2
drainage tubes. He managed to smile a little and
the surgeon's hand. Jayden always amazes us. We're so
proud of him.
I will be praying really hard for him
and hope you
will too. This could be Jayden's big break. He
deserves it and so much more.
Special thanks to our
friend and neighbor, Derek, who
was there for us today and made such a difficult day a
little easier. He was truly a
Andy, Jenny, Jayden, & Dakota
Well, it appears that Jayden is getting seizures on
both side of his brain. It has been determined that a
callosotomy would be the best type of surgery
for him at this time. This surgery separates the
connection between the
left and right sides of his
brain. The doctors believe this will stop Jayden's
drops and falls. Jayden's seizures are
when the information goes from one side to the next it
causes the head drops and body falls. Once this
is done, Jayden will wait about 3 months and
have an EEG monitoring. At that time they can see if
Jayden suffers partial
seizures from one side, the
right side mainly since that shows the most activity.
If this is the case and it appears
that he still has
seizures on one side, we can consider another surgery
and remove the localized area. To have the corpus
we will need to wait a couple of weeks
since this grid surgery was done. It is unsafe as this
time to do this other
surgery, mainly because Jayden
is a meningitis patient. His risk is higher to get
meningitis or get an infection.
likely Thursday will be the day the grids are
removed and Jayden will be in the hospital for at
least another 3 days
after that. We are not happy
about how this has turned out but we are happy that
something can be done. This experience
has been alot
for Jayden. He's been through alot especially this
time around and the thought of more anesthesia for
surgery and for the next is very upsetting.
Hopefully, we'll all be home by next week.
Andy, Jenny, Jayden
AUGUST 2 ,2007
Quick update! Jayden came
home Sunday night. He's been
doing well. Very happy to be home, eating great and
having very, very few seizures.
night, Jayden became very ill and seemed very
uncomfortable. We took him to St. Joe's and he ran a
slight fever. His
blood work shows an infection. His
neurosurgeon at NYU is trying to connect with the
neurosurgeon at St. Joes to see
if Jayden should be
transferred back to NYU. Hopefully, there is no
infection in the brain which can affect his shunt
cause a huge problem.
Please pray that there is no major infection and that
Jayden will be well to come home
Love & blessings,
Andy, Jenny, Jayden and Dakota
Real quick, Jayden keeps us on our toes. Yesterday he was not feeling good at all and was sleeping
in the hospital at St. Joes all day and did not want to wake up, and could not keep his eyes open. Jenny & I felt something
was going wrong, and nobody had any answers. So we contacted his Doctor at NYU and they said come right over. I called my
second family the Passaic County Sheriff's Department and they sent not only an ambulance for transport but 2 motorcycles
and a patrol car with the Sheriff himself leading the way. Needless to say we made it through New York friday traffic and
a brief downpour to NYU in no time at all. We got to NYU and they began a bunch of testing and Jayden was placed in a isolation
room due to some type of infection. His white blood count is very high and coming down slowly. Had there been an infection
in his brain, Jay would be in a lot of trouble. But because he is alert and responsive they feel it is elsewhere in his body,
or something else like his increased seizure activity or the steroids he was on after surgery that caused his white blood
count to be so high. We are waiting for Jay to poop(to much info sometimes huh?) to check it for a possible infection in his
stomach. Through everything as always Jayden continues to smile and wave and thank everyone. He is amazing! Thank you to everyone
for your supportive emails, phone calls, text messages and words through this rough time. And once again I will never be able
to thank Sheriff Jerry Speziale and every single member of my Department enough. Your role in Jayden's recovery is huge! You
really don't know how much it means to us.
We will keep you updated and the Doctors at NYU are doing everything possible
to make sure Jayden and all of us will be at the Dinner wednesday night!
Thanx for your continued prayer & support!
Andy, Jenny, Jayden & Dakota
See some video from Jayden's
benefit dinner at:
Hope you enjoy!
Thank you to everyone involved
with the dinner, we all had a great time!
Thank you to everyone for your support and donations for this wonderful event!
Andy, Jenny, Jayden & Dakota
for the cliff hanger. we never explained what
happened after Andy's last e-mail.
the following day, the 5th, Jayden
had been showing
lots of improvement, no fever, good appetite and great
attitude. the resident doctor thought it would
to send Jayden home. the doctors and nurses at nyu
were wonderful. they were very caring, very concerned
the best decision we could have made. it was a big
difference from the care we received at St. Joe's this
were able to get a specimen before we left the
hospital to send out for testing. 2 days later, we
found out the Jayden
had C-dif. he was put on a course
of antibiotics for 10 days.
we were able to go to the dinner, obviously, by the
that was sent to you. it was a great turnout with
a lot of wonderful people there from the sheriff's
the sheriff. it was a great night which
we appreciated. we thank everyone for their generous
week, Jayden and I started hyberbaric
oxygen therapy. we went twice a day for a couple of
days but this past week Jayden
was giving me a hard
time about going. last weekend we noticed more
seizures and he had a little appetite. monday i
him to the pediatrician. i suspected C-dif again.
another specimen was sent out and C-dif was confirmed.
it's not uncommon to need more antibiotics
for this infection. he was put on antibiotics for
another 10 days.
have seen some struggles with the topomax that he
was put on in july. it affects his mood and makes him
and angry. we have the scratches to
prove it. we have come down on it a bit and have seen
a more positive change. we
want him off the drug but
his doctor believes this drug can help his seizures.
he does have less on the drug but the
loss of appetite, which happens on this drug, is too
much to bear. we'll see how this plays out.
we have an appointment with his neurosurgeon
for his post-op appointment. it has been a month today
since his surgery.
his scars have healed beautifully
with the oxygen therapy. we'll also discuss the next
step which will probably be the
corpus colostomy in
october, i think. we'll find out more about that
tomorrow we hope.
otherwise, we're hanging
in there. summer has come and
gone and has not been an enjoyable one, but hopefully
all this will benefit him so that
he can enjoy every
summer to come.
Love & Blessings,
Andy, Jenny, Jayden and Dakota
It seems we only have time for monthly updates latley. We have been very busy moving, and we are
completely out of our home in Bloomfield and it will be on the market this week if anyone is interested.
been doing OK. It has been a lot of ups and downs again. He has a couple of good days where his seizures aren't too bad then
they go out of control. The seizures are changing once again and he seems to having grand mal seizures now. When the seizures
are minimal, Jay has a good day, when they are not it is a bad day all around. We are scheduled for October 25th for Jayden's
next brain surgery where Dr. Weiner at NYU will separate 3/4 of Jay's brain, the right from the left side. This will hopefully
control the seizure activity from shooting from one side to the other. We are very nervous but hopeful this is the best for
Jayden. The seizures everyday are just not allowing him to do very much. They wipe him out where he sleeps after ward or he
is in a very bad mood.
Even through everything Jayden is being a great big brother to Dakota. They are learning to play
nice together, some times ;-) but he is very affectionate and caring with her. And Dakota is 19 months going on 19, she is
a woman afterall and we all know how they are (I will get smacked by Jenny when she reads this!).
A very special thank
you to The North East Ridge Runners who had a wonderful benefit dinner the other night. It was a great time! A very special
thanks to Domenick Petrillo, Herbie Dekorte and everyone involved who so hard for a beautiful night. And a special thanks
to Rich Suebert from the NY Giants who was there and donated some amazing stuff which was auctioned off, and thank you for
spending time with Jay and I.
Also a reminder if you can join us next weekend October 14 at Packanack Lake in Wayne NJ
at 9:00am for the 2007 Meningitis Walk A Thon in memory of Alexa Taylor Senyk. We hope to see you there!
We will keep
you advised with Jayden's surgery as we know what is going on. We will probably be at NYU for about 2 weeks with Jay. We ask
that you keep us in your thoughts and prayers.
Thanx and enjoy everyday!
Love Andy, Jenny, Jayden & Dakota
Just wanted to send a quick note. Jayden will be undergoing brain surgery tommorrow 10/24/07
ay NYU for a corpus colostomy. We ask that your thoughts and prayers are with him. We will update as soon as we know how everything
is going. Thanx
Luv Andy, Jenny, Jayden & Dakota
Quick update! Jayden's surgery went very well. Better
than the surgeon anticipated. He expected
and thank God, there were none. Jayden
came out of surgery, very cold. His tempertature was
extremely low so he had
on leg warmers and was under
heat. He had the breathing tube a little longer to be
safe. Surgery was done by 2:00 and
luckily by 4:30 the
breathing tube was removed. He was still sleeping most
of the day and woke up more after 7:00pm.
He seems a
little uncomfortable and is getting round the clock
tylenol. His spirits seem good and he signed he was
to drink. He still seems a little groggy but
has smiled and laughed with his favorite cartoons.
He's getting a ct scan
shortly to check if everything
Will keep you posted as we know.
Thanks for the prayers. Keep them
Andy, Jenny, Jayden, and Dakota
FIrst, I'd like to apologize for the delay in updates.
I'll start back from Jayden's surgery. He recovered
and was home in 3 days. We were amazed. He
did fantastic in the hospital. We instantly saw
improvements in his coordination
and the steroids made
him extremely hungry. He gained 4 pounds in a week and
half. His seizures weren't as bad but still
were told by his seizure doctor that we'd need to wait
anywhere from 3 to 6 months before seeing any real
if any. After 2 weeks home, he went back to
school. He suffered a grand-mal seizure there which
scared everyone. His
doctor reassured us that his
brain was in transition and that we'd see all kinds of
changes. She wasn't surprised at
all. At about 5
weeks, Jayden had a brief EEG in the office and she
did see his activity was more broken up as apposed
merging from both sides. Considering it had been only
5 weeks, Dr. LaJoie was very happy to see any changes
also said that it may not necessarily stay that
way. Time will still tell. Since Jayden's brain is in
like starting over when it comes to
the meds. She decided to wean him off the trileptal
medication which never really
helped. She also started
him back on Depakene which he had been on 3 years ago.
So far we are in week 4 of the med changes.
are good some days are bad. Just like before. Jayden
has also had some colds and had strep throat as well.
have definitely been busy. About 2 1/2 weeks ago
Jayden had a routine CAT scan done. The doctor was
very concerned at
the lab and said she noticed
swelling and bleeding but it could also be normal
considering the surgery. We were instantly
in a panic
but 3 days later, the surgeon saw us and said his scan
actually looked really good and that his brain looked
The fluid the tech had seen was of no concern
to the surgeon. He was quite pleased, What a relief!
All in all, things
are the same in a sense with the
seizures. There is a slight improvement. His eyes have
a brightness in them that we
noticed after surgery.
We're still very optimistic that this surgery will
help. We have seen a major decline in his
since the strep throat so we're hoping that changes.
He still very funny and mischievous. Dakota has
having all of us home this week. We had fun
with them and Christmas was quiet but nice. I have
attached pics attached
of the day Jayden came home
from the hospital, a picture from Thanksgiving, Dakota
and their Christmas picture. Hope
everyone has a
wonderful New Years.
Love and Blessings,