HAPPY NEW YEAR!
Happy new Year to
We hope 2006 is a very happy, healthy & prosperous
year for all.
We haven't had much time for updates latley,
been very busy with doctor appointments and running
around with the holidays. Jayden has been in a slump.
are trying to fine tune the meds and he really
thrown off, either having alot of seizures, or very
lethargic, or both.
It has been a very rough couple of
weeks. We are hoping for a better 2006. We are looking
into some new treatments,
and options and we will just
see what happens, thats all we can do. Thank you for
your continued prayer & support. Love
Andy, Jenny &
Jayden (and Jay's little sister coming in March)
Ups & downs, thats
how we are starting 2006. Jayden has been in a slump for a few weeks now. We can't seem to get the meds right, we were going
up on Limactal but Jay was too lethargic, and slumping to his left and the seizures were not improving. So we are coming down
on the meds now. Jay has been having alot of seizures latley we are up around 10 again. They are stong ones that throw him
face first to the ground, so we have had our hands full keeping him safe. It is very very frustrating but still through it
Jayden seems to be learning a little more each day. He still amazes us everyday by showing us something new. And even as hard
as everyday is Jayden's sense of humor is great. We pick him up from falling, and he picks us up when we are down. We will
start Hyperbaric Oxygen Therapy next week, and hopefully help with Jayden's brain injury.
Love Andy, Jenny & Jayden
Lots going on lately. On the 12th of January, we were
called in for an overnight EEG from Dr. Lancman, our
opinion doctor out of Hackensack Medical.
Jayden stayed there until Saturday afternoon. They
pretty much told us what
we already knew. He has a
very active EEG which shows seizures on both sides of
the brain. He would not be a candidate
surgery. Not that we were even considering that
anyway, but it was a bit frustrating that we were
to hear what we knew. It confirmed for us that
we will stick with his current doctor out of Columbia
saw her actually the following week
and in about 3 weeks, she will admit Jayden for about
a week or so to Columbia to
make medicine changes,
while being hooked up in the hospital. It's much safer
to make major changes while being observed
hospital. While we wait until then, we are increasing
his Keppra and weaning him off Lamictal. In those 3
he should be off Lamictal totally. We're hoping
that the Keppra he's been on will help. That drug had
not been fully
utilized so it makes sense to try to
work with it. So in three weeks, Jayden should be down
to 3 seizure meds and hopefully
down one more after
the hospital stay. We'll see.
Last Tuesday, the 17th, Jayden started Hyperbaric
(HBOT) In Hawthorne at First Step
He associates the chamber with
ship and brings Buzz Lightyear with him in the
car. He's been great, as usual. He understands that he
needs to stay
in the chamber for the hour. He was at
50% oxygen for the first couple of times. Friday, he
went up to 100%,
while wearing a mask. So far, he
seems much more alert, vocal, and very tired after
sessions. Andy sits in the chamber
and gets the 50%
oxygen and says it does drain you, physically.
God-willing, Jayden will continue with 2 one hour
everyday, Monday through Friday, totalling 40
sessions. Because of the HBOT, we had pushed the
Columbia stay for 3 weeks.
Once HBOT is started, it
needs to be continued without long interruptions in
between. Plus, HBOT may make a difference
in so many
areas. It could happen right away or the effects could
show up 2 years later. We strongly believe that HBOT
help at some point. The doctor says that changes
that show up immediately usually happen towards the
end of the 40 sessions.
We should not be discouraged
if we don't see the effects right away as we
understand that things take time.
usual, Jayden is a trooper. He did great at
Hackensack. It was a great hospital and the people we
so nice and accomodating.
Jayden handles the HBOT like
a champ, and a big thank you to everyone at First Step
Achievements. We're so proud of
his tolerance abnd
Love & blessings,
Andy, Jenny, and Jayden
have been very, very busy latley, so sory for no updates. With Jayden getting 2 Hyperbaric Oxygen therapies a day and all
the running around Jenny & I have our hands full. Not to mention with Jay's little sister on the way soon, we have been getting
everything ready for her. We have a few more days of therapy then next week Jayden will be admitted to Presbyterian Hospital
where he and I will stay for a week or two, and hopefully during that time the Dr. will get aggresive with his seizure meds
and find the right balance. Jayden is off of Limictal as of today. We have seen some little changes in Jay since starting
the Oxygen treatments such as more focus, concentration and at times a little more vocal, but still no words yet. His seizures
have changed a little again, a little better in the morning but worse at night? His attitude and sense of humor has been great.
And as always through everything everyday, as busy and hectic as they are Jayden's is a trooper. When he is not exhausted
he smiles and helps in everyway he can. He is truly a hero! Well Jenny, Jayden, & I (and baby too) will be very, very busy
for the next couple weeks but we will try and keep you all informed. Thank you again for all your continued prayer & support.
Love Andy, Jenny, Jayden & baby coming soon!
FEBRUARY 21 2006
Jayden is home! He came home on Saturday afternoon.
he still has a very active eeg, his Dr.
weaned him off the depakote (last dose being Friday
night). He was started Tuesday
night (2/14/06) on
Felbatrol. It's an alerting type drug, which is good.
Of course, like every other medication, there
side-effects. But we will be monitoring him closely
and he will be getting blood drawn every week for
weeks. So far, we have seen a huge decline in
seizures and his eeg shows some tiny improvement.
We'll take it considering
he was only on for a very
short time when they saw the changes. He's extrememly
active and hyper (another side-effect
to the drug).
Physically, he's much stronger on his feet and appears
to "just be feeling good". We're absolutely exhausted
it's wonderful to see him feeling so good and so
strong. We will gradually increase this new medication
and cross our
Hopefully, he will be back in school tomorrow and
we'll take it from there.
He completed his 40
dives with the hyperbaric therapy
the Monday morning before he went to Columbia. We
anticipate seeing some positive
changes over the next
couple of months. Once the seizures are somewhat
manageable, we'll work on the next issue, the
All and all, Jayden did a great job in the hospital
and saw did Andy. Andy, as usual, was the best dad
caretaker, losing many nights of sleep to watch
and comfort Jayden.
We'll send another update when there's more
We have not had internet service for about a week and
a half (Comcast, go figure), so once it's corrected,
will be sent more regularly.
Love & blessings,
Andy, Jenny & Jayden
Hello to all,
me catch you all up on our past 2 weeks. Overall Jayden is doing much, much better. The combination of Hyperbaric Oxygen and
changes in medications is doing some really good things. The seizures are better. It seems to be a pattern of one day no seizures
and the next day about 3 big ones which have changed to a head drop with full body stiffness which lasts about 5 to 10 seconds,
some body twitching and Jay's eyes lock to the right and twitch for another 20 seconds or so. He seems to be fighting to get
his eyes straight and is very upset and when the episode is over he is very tired and cranky. He sometimes takes a short nap
or just tries to continue on and within 20 to 30 minutes he is back on track again. His meds have changed to morning he receives
2ml Felbamate, 7.5ml Keppra, 15 mg Clobazam, 3 1/2ml Carnitor- afternoon: 1.5ml Felbamate, 5ml Keppra- night: 1ml Felbamate,
5ml Keppra, 15mg Clobazam, & 3 1/2ml Carnitor (for our records)
Jay is much steadier on his feet and enjoys walking and
even running more now. Of course however he does not enjoy us constantly holding onto him. He wants his freedom and rightfully
so, and soon he will have it we hope! He is becoming very vocal again, trying new sounds to communicate, but still no words.
He seems to respond less now to sound though, we are still very confused. We will be meeting with a new E.N.T. Doctor from
N.Y.U. at the end of March for more testing and possibly again to see if Jayden is a candidate for cochclear ear implants.
had a meeting last week with Jayden's teacher and therapists from Oakview School. We were overwhelmed at the great report
we received. Since Jay's return to school after being out for 5 weeks, they all have noticed many positive changes in him.
They told us Jayden's social skills are great, though they have always been. He is very good with matching colors and objects.
His fine motor skills have improved alot. His getting around and walking on stairs has improved. His frustration level is
better, and tolerance for activites has increased. They have seen some new and positive things from Jayden and are very pleased
with him. Jenny & I could not be happier or more proud of him!
Jayden has been getting alot of blood work done since the
med changes. The Epileptoligist Dr. Leary is very happy with results and the way his blood results look. That is very good
Tuesday will be here very quickly and alot will change on that day (or the next?) Jenny will be going to hospital
to be induced into labor. And we will be introducing Jayden's little sister Dakota Skye Singer to our journey. Without a doubt
Jay will be a super big brother, as will Dakota to be an amazing little sister. They will learn from each other as well as
teach each other. We know they will be an incredible team together! It will be hard at first to adjust our already hectic
schedule. We will be tired but we will just smother them both with love and affection, and we will be just fine. And of course
we will have Super Jayden to help us through. He has shown us everyday how we can get through anything. We sometimes forget
just how far we have come against many odds. We still have a way to go, but our team will just get stronger with the addition
of Dakota, and of course Jay's incredible drive. Jayden was even a big help this past week getting the new room ready and
Jenny & I believe he knows his sister is on the way and is very happy about it.
Well we will keep you informed as this
Love Andy, Jenny & Jayden
Oh what a night!
Dakota Skye Singer joined us last night3/7/2006
at 11:04pm at 6lbs 15 ounces and 19 & 3/4 inches big! Jenny & Her are doing just great! Thanx to Aunt Debbie for being with
Jenny & Dakota through the whole thing. Unfortunatley Jayden & I were also in the Hospital, but for other reasons. Jayden
became very ill with vomiting and fever, but after a night of testing, X-rays, CAT scans and plenty of fluids pumped into
him he is feeling better today, and we just got home at 9am. I have still not yet seen my daughter, but Jenny describes her
as looking just like Jay did with absolute beauty! We all had a tough day yesterday, but today is a new day and a great one!
I can't wait to meet my princess, and I can't wait till Jay meets her too! I had been signing to Jay all day, and night that
mommy was having a baby, his sister. He is very excited! Well we will keep you updated, as soon as we all get a little sleep(hahahahaha)
Love ya Andy, Jenny, Jayden & Dakota
Check out her pic on the newest photo page
the last one started off "oh what a night", this one starts off "oh what a week".
After Jenny & Dakota came home from the
hospital on thursday last week the fun began. Saturday night about 7pm Jenny ended up in the hospital with a stomach virus.
About midnight Dakota had diarrhea and I took her to the E.R. about 1:30am, which was packed so as Jenny was getting discharged
at 4am we all left. Thanx to Jenny's sister in law Debbie and Jen's mom for helping us through that night. On Sunday morning
we took Jayden & Dakota to the Doctor because Jay had not been urinating alot since being sick. Everything is fine, just his
body adjusting, he is still not fully on track but better. The baby was also just fine.
Now on monday morning about 4am
I got really sick and I ended up in the E.R. by 5pm dehydrated. So we all had a nasty stomach virus, but we are finally back
on track, took a couple of days.
Big brother Jayden is doing a great job. He enjoys holding Dakota Skye and he is very
gentile and protective. We are seeing a definate change in Jay since becoming a big brother. In school they are noticing big
changes for the better with Jay on a daily basis.
The seizures are definatley better, Jay seems to have a day with none,
then a day with one or two. They have changed again, and Jay seems to fight to come out of them and he is really upset afterward.
He is no longer wobbly in the morning, and his balance is improving. We are allowing him to be a little more independant on
his feet so he can strenghten himself.
Jenny & I know the big piece of the puzzle that is missing is Jayden's hearing.
He has never been more vocal than since the baby came home. He wants to speak so badly, but because he can't hear, or can't
hear correctly he can't speak. We really hope to get the answers on the 29th at N.Y.U. Coclear Ear Center.
Check out the
new pics of the big, proud, loving and best brother Jayden.
Love ya Andy, Jenny, Jayden & Dakota
been a wonderful week. jayden has been
practically seizure-free this week. he's doing really
well in school and very
interested in everything
around him. he wants to learn the sign for things he
sees and his aide is teaching him alot.
jayden had a
follow-up appointment with the doctor who did his
hyperbaric therapy. she would like him to do another
sessions and start a sensory program. she thinks it
will help jayden focus more on his hearing. he tends
to tune out
the sounds around him.
jayden has an appointment at NYU with a dr. roland.
hopefully we'll get a new opinion regarding
hearing. other than that, we are hoping jayden
continues to stay seizure-free. he's doing so good.
until the next update, take care.
love & blessings,
andy, jenny, jayden and dakota
How's everybody doing? We are doing good, very good. We are going on 3 weeks now with almost little
or no seizures. We have possibly seen 2 or 3 little moments of a second or two where Jay zones then comes right back, but
no head drop or seizure. Jenny & I are letting Jayden walk and stand a little more on his own, we are very nervous but it
is building his strength & confidence. He is getting much stronger and steady, he peddled his pedal car around the block today,
and I only had to push him a little here and there to get him going. Usually I have to do most of the work.
friday was the 2 year anniversary of when Jayden first got sick, a day we will never forget. Jayden has come so far in these
past 2 years, and just wait and see how much further he goes in the next! We have been on a very tough journey, one that we
wish we never had to travel. But since we have and we will continue to, we are thankful for everyday. We have learned so much
about life, family, friends, strength, love, faith. We have learned medical things we would have never of known about. We
have seen a side of life we would have never of seen. We have met great people we would have never met. We have learned things
about ourselves we would have never known. Everyday is always something new. We learn, we research, we question. Everyday
there is always something new with Jayden, but everyday there is always love and laughter!
Jayden is doing great with his
little sister, he really enjoys watching over her and is very protective and gentle.
Once again thanks to each and everyone
of you for all your continued support these past 2 years. All the amazing things you have done and continue to do is a very
big part of Jayden's recovery. So thank you from us, we have not done this alone.
Love Andy, Jenny, Jayden & Dakota
It has been an interesting couple of weeks. After Dr.
Roland, the ENT out of NYU saw Jayden and reviewed all
paperwork and test that had been done, he called
and said Jayden's cochlear was open and would be a
good candidate for
a cochlear implant if his hearing
tests at the cochlear center were consistent. After 2
days at the cochlear implant
center, Jayden's results
were consistent with profound hearing loss
(sensorineural hearing loss). So, it was determined
Jayden can get a cochlear implant. Since we don't
want to waste anymore time, we have agreed to pursue
this ASAP. Dr.
Roland gave us a tentative surgery date
of May 24th. We have an appointment on the 11th for
final questions and information
about what we can
expect. Andy and I have mixed emotions about this. The
audiologist said the implant can definitely
to hear again, but how his brain interprets what sound
comes in cannot be determined. With the amount of
he has, he cannot develop his speech. We're
optimistic that this is the right decision for Jayden.
He will be able to
hear and hopefully will get speech
back. It may take a short time to come, or it may take
a long time. There are no
guarantees. We're scared
about the surgery and about the whole thing. The
implant is inserted into his cochlear allowing
to come in. Any existing hearing he has will be gone
and he will be dependent on the implant for the rest
his life. But his hearing will not get better on
it's own. So we must do everything we can to help
Jayden has been very vocal
again, making all kinds of sound. It gives us hope
that once he can hear, he'll remember
how to speak.
He'll need lots of speech therapy and he'll need lots
of time to relearn how to hear, especially with
new device where hearing will be different than how we
hear. We have no doubt Jayden will continue to move
We want to give him every opportunity
possible. Please continue to pray for him. This is a
very difficult decision to
make but in the long run,
it's probably the best thing.
Love and blessings,
Andy, Jenny, Jayden and Dakota
just a quick update today. jayden will be having
cochlear implant surgery this wednesday, may 24th.
scared and excited at the same time. there are
no guarantees but knowing that there is a possiblity
of jayden hearing
and speaking again has given us new
hope. jayden has been cleared by his pediatrician and
epileptologist. at some point,
after his surgery, he
will need to get another overnight EEG at columbia
presbyterian. he is still getting small staring
and has had his felbatol increased. otherwise, he
continues to do well and loves his sister. he's very
with her and wants to help out and get us
whatever we need for her.
we will update you all after his surgery on
recovers. it's an overnight stay for observation and
hydration. the surgery itself is about 2 hours long.
will need to wait 3 weeks before the implant is
turned on and than who knows.
please say an extra prayer for our
champ. check out
love & blessings,
andy, jenny, jayden, & dakota
road to recovery is never a smooth one.
Jayden had cochlear implant surgery on the 24th of
May, last Wednesday.
His surgery was late from the
previous morning surgeries. He was taken in by noon.
We were there by 8:15am. Jayden was
really patient and
I believed sensed something was going on. He never
asked to eat or drink anything. He never leaves
house without eating, but he was his usual trooper
The doctor called us in at about 2:00 and said that
was fine. He than proceeded to tell us that
there had been some changes from Jayden's MRI from
last year. When he began
inserting the implant, he hit
a point where the implant would not go in any further.
It seems that ossification had
formed (bone formed in
his cochlear). It is very common in meningitis
patients. He said either the MRI didn't pick up
which happens, or the bone formed in the last year. It
would explain how he seemed to hear more last year
this year. He said had we tested him last year
and had any existing hearing, he would not have been a
an implant. So, we might have been in
the same place now anyway. He was disappointed in that
he wasn't able to put the
full implant in. The implant
has 22 electrodes picking up different frequencies of
sound. He was able to put 14 out
of the 22. He said he
has lots of patients who have 10 electrodes and do
just as well. 22 would have been ideal, but
too bad. He says once the device is turned on (June 21
& 22nd) and adjustments are made, we'll see how well
does. He said to give it a couple of months and if
we're not satisfied with the results that we have
other options to
explore. We need to give this time
first. He said mostly all of his patients with 10
electrodes are doing well and speaking.
hope! He said too, that Jayden just recently lost his
hearing so he's hopeful that Jayden will recover his
and speech quicker.
Jayden was in the recovery room for 6 1/2 hours. He
tried to wake up but due to the seizure
meds, it took
longer. We were very concerned about how long it was
taking. He had some vomiting, which is not uncommon
anesthesia, but also having an operation on his
ear will throw his equilibrium off causing more
nausea. Poor Jayden
ate nothing all day and looked in
pain. Fortunately, by the time I left (midnight) I had
him laughing and smiling. He
managed to keep his meds
down. Andy stayed with him.
The next day, Jayden was a bit more himself but
what little he ate that morning. He was still
in pain and given Tylenol. We weren't sure if he would
be going home.
The surgeon cleared him and said the
area looked good. But, until Jayden could keep some
food down, we weren't sending
him home. Later, in the
afternoon, he went to the playroom and saw a clown. He
perked up and ate a little. So, by 4:00,
Andy said he
wanted to bring Jayden home. Thanks to our neighbor
and friend, Bobby, we went to get them. Jayden was
but ate a sandwich before bed and slept so
well that night. He was much more himself the
following days and seems to
be back on track. He was
so happy to be home and see his sister.
Thanks to my brother, Joe, who came with us surgery
Kept our spirits up and made us laugh. He went
home at 3:30pm and came back for me that night and has
been a wonderful
support to me. My mom, as usual, was
my support with Dakota and Debbie ran errands for my
mom, making several trips
to see Dakota and check in.
And Andy, of course, the best father, sat by Jayden's
side all night and watched him.
it wasn't the smoothest day but only time will
tell if this works. We're exhausted, but hopeful.
Love & blessings,
Jenny, Jayden, & Dakota
Its been a while since we sent an update because we
just haven't had any time. We are very nervous and waiting until next Wednesday when Jayden gets his cochlear ear implant
turned on. We don't know what to expect? We may get hearing right away or we may have to wait weeks, or months. We will just
have to see. We have been good overall though with some minor bumps here and there. But everyday is a good day. Jenny & I,
and even Dakota are very proud of Jay. Today Jayden graduated from Preschool. We are very thankful to everyone at Oakview
School for all they have done for and with Jay. Thanks to Jay's teacher Mrs. Ruiz, all the aides, therapists, staff and especially
Ms. Judy who was Jayden's aide who was always by his side and helped him. We will miss you as we begin our new school in July,
but since we only live down the block we will stop by from time to time. Congratulations once again to Jayden, we are so proud
Love Andy, Jenny, Jayden & Dakota
JUNE 21, 2006
The implant was turned on! Jayden showed some definite
when tested directly to the implant. When
the audiologist, Janet, made a sound out loud (ba ba
ba sound) to see if Jayden
would respond, Jayden
imitated the exact sound. He wasn't looking at her at
the time. So, of course, it opened the flood
us and Janet, as well, saying that she had never had a
child respond like that and imitate a sound. We were
happy. It'll take some time. We saw some changes at
home. He seemed really into Spongebob, more than
usual. But, it
will take lots of time and speech
therapy to get Jayden speaking and hearing correctly.
As usual, Jayden amazes
us again. He's is so wonderful
in that he tries to adapt to situations as quickly as
he can. He left the implant piece
on all day and when
it would fall off, he'd gently hold it in his hand and
let me know.
We're so completely proud
of his attitude and his
Tomorrow he has more adjustments and than every couple
of weeks, more and more.
Until then, we'll do
everything we can do to help him along.
Love & blessings,
Andy, Jenny, Jayden, & Dakota