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JANUARY 4,2005
Just a quick update on Jayden tonight, I'm
really
tired.
Jayden is doing well. He gave us quite a scare this
weekend. Friday, he fell off the couch and
Sunday, he
didn't seem to feel good. He wanted to sleep and
seemed uncomfortable. Definitely not how Jayden
usually
acts, so we took him to the ER. Of course, he
perked up the minute we were taken in, thank God. They
did a CAT scan
since we had mentioned the fall 2 days
earlier. Everything looked fine. So, we came home and
Jayden seemed much better.
Yesterday,
Jayden seemed like he didn't feel good, but
pointed to his throat when he would try to swallow, so
we gave him motrin
and he perked up. His appetite
hasn't been too good the last 2 days, but that's
expected if his throat bothers him.
I cancelled
therapy yesterday, so he could rest.
Today he had an appointment with his neurosurgeon for
a routine
check-up on his shunt. The doctor was
pleased with his cat scans and progress. He took a
double-take when he saw Jayden
walking around with his
dad.
Other than that, he's trying more and more to talk.
He's understanding more of what
we're say and he seems
much more in tune with his hearing. It's still in and
out, but we're seeing much more in's.
Hope
your New Year was great! Ours was low-key but
that's fine, as long as Jayden is with us.
Love & blessings,
Andy,
Jenny, and Jayden
JANUARY 8,2005
Howdy yall,
Once again I must apologize for the lack of updates, Jenny & I have
practically no time lately for anything. But that is great news because all of our time is spent doing so much with Jayden.
He gave us that scare last week with the vomiting and sleepiness and the lack of eating, he must have had a bug. But he is
back on track and eating good and doing so much. He has been doing some super walking these past few days, he does not want
our help and his walking is getting steadier, he is bending his knees more and not so much swinging his stiff legs. He primarily
wants to walk everywhere now, even up and down the stairs. He sat at the diningroom table today and just played with cars
and little people for almost an hour by himself. We played catch today and Jay is doing some great catching with both hands,
and throwing with both hands. He seems to be hearing better and turning to some sounds, it seems higher pitch sounds catch
his attention. He is keeping Jenny & I laughing with all of his silliness. He is doing so many things he used to do to make
us laugh. Jayden has been very vocal with us, but is doing great with using basic sign language to communicate with us. We
just see so many new things everyday that just fill us with joy! Jayden is really coming back to us everyday. We have been
showing him pictures of family and friends and he really gets excited with some and almost sad with others, we just don't
what is being stirred up with Jay. But we hope it is reminding him of things. We are so happy and greatfull for his progress,
although it is slow we are very happy with the way this miracle is progressing. Looking into his eyes I see the true meaning
of love. Thank you so much for your continued prayer and support. We will try and keep with the updates as much as we can,
but we are thankful that Jayden keeps us so busy walking, playing and learing more and more everyday. You can check out a
very nice article in a newspaper called NJCops which is distributed to Law Enforcement agencies all over NJ, it is at www.njcops.com
and go to page 9 the story Passaic County helps family in need. It is a great article and I would like to thank Lavene Gass
for that. Gotta go and play now we have set up a tent and tunnel in the livingroom and are just being silly. Love you all!
Love Andy, Jenny & Jayden
And we would like to say hello to some of Jays classmates from Union Conn School in Montclair
who have been following our Journey. Hello to Kyle, Kaitlyn, Dylan & Casey. We thank you for your support and Jayden looks
forward to playing with with you all soon, very soon! Love ya
JANUARY 17,2005
Hello all, It looks like we will be
doing once a week updates, or if we can get them in during the week. This past week Jayden has come a long way with his walking,
he gets around the house great walking about 90% of the time with 10% crawling. He is much more confident and strong
with his walking and balance, and has even tried running twice. Jenny & I are definatley noticing more attempts to speak
with us, and more vocal when he wants something. We are still unsure of his hearing but every now and then he hears for a
short time. Jayden seems to us to be doing things a 4 year old would be doing, the way he plays, his energy, his attitude.
Jayden is very loving and caring, full of hugs and kisses, and every now and then his frustartion comes out, but it does not
last very long and if he hits us he usually ends up kissing us with a I'm sorry look on his face. We are doing pretty good
with basic sign language to communicate with each other, but Jenny & I know Jayden now and can usually figure out right away
what he wants, and that makes Jay very happy. He is eating better but with all of his activity and walking he is burning it
off as fast as he eats it. He is so comical, and imitates Abbot & Costello movies from start to finish, he loves slap stick
comedy, who doesn't? We could not be happier with the way things are going, would we like to go faster sure, but we know this
has been a long journey up this giant mountain in front of us, but look how far up the mountain we have come. All the little
steps everyday have gotten us very, very far, we still have a ways to go but Jenny, Jayden and myself all know there is nothing
we can't do together! And of course with your continued prayer and support we will reach the top. Thank you all! Love Andy,
Jenny & Jayden
JANUARY 23,2005
Hi,
Just a quick update on Jayden's progress. He continues
to do well in
walking. He walks everywhere. He also
tries to run and jump. He's still very vocal, making
new sounds all the time.
He had his psychological
evaluation on Friday from the board of education. We
were so proud of him. He walked through
the school and
sat very patiently. His attention span to each task
was very short, so I don't know how well he was able
to
evaluate him. I think he was pleased though, to see
Jayden so friendly and well-behaved. Jayden did try to
imitate what
the psychologlist showed him. He even
drew a circle. In our opinion, he did great.
Hopefully, he'll be attending the
school down the
street from us, on a five-day, afternoon program. He
still needs to be evaluated by speech, pt, and
ot. He
may require an additional program besides the half day
program. We'll find that out after all the
evaluations.
Besides
that, Jayden continues to amaze us everyday.
He's so affectionate, funny, adorable, and very clingy
with his mom. Not,
that I mind that at all.
Love & blessings to you all,
Andy, Jenny, & Jayden
JANUARY 28,2005
We ask that
you please pray with us for Jenny's dad who passed away today. Jenny has lost her father, Jayden has lost his Papi and playbuddy,
I have lost a great friend today, and the world has lost a very special person. We know that John Velez is with us still and
watching over Jayden even more than ever now. Please pray for strength for John's wonderful wife Carmen, Jenny & her brothers
Joe, John Jr, Luis, Martin & families during this very difficult time. John we all love you and will be greatly missed! Rest
in peace. Love Andy, Jenny & Jayden
JANUARY 29,2005
when my son became ill, i never thought i could feel such pain
ever again. i have now lost the most precious, most adoring, and most loving father. words cannot express the pain and anger
i feel at this time. my dad meant the world to me. jayden adored him and would light up when he saw him. my dad and mom have
been by our sides since day one that jayden became ill. a piece of my heart has died with him and the emptiness i feel will
never be filled. i am so proud to be his daughter and i was blessed to be his child. i look forward to the day i am joined
with him again.
thank you for your good thoughts. thank you for your prayers. my life will truly be changed forever.
my heart will forever ache until i see him again.
love,
jenny
Juan M. (John) Velez
VELEZ - Juan (John)
M., of Passaic on January 28, 2005. Beloved husband of Carmen (nee Diaz). Devoted father of John Velez, Jr., Louis Velez,
Martin Velez, Joseph Velez and Jennisabel Singer. Dear brother of three brothers, seven sisters and two predeceased brothers.
Loving grandfather of thirteen and great-grandfather of four. Dear uncle of several nieces and nephews. Funeral services will
be Tuesday 9:15 AM from the Bizub-Quinlan Funeral Home, 1313 Van Houten Avenue, Clifton and 10 AM at St. Clare RC Church,
31 Allwood Road, Clifton. Interment to follow at East Ridgelawn Cemetery, Clifton. Visiting Monday from 2-4 and 7-9 PM. Memorial
contributions to Meningitis Angels, P.O. Box 448, Porter, Texas 77365 (meningitis-angels.org) would be appreciated. Visit
www.bizub.com for driving directions and online condolences
Published in The Record and Herald News on 1/30/2005.
FEBRUARY
6,2005
Since it's halftime at this point of the superbowl
game, I thought I'd send a quick update. I would first
like
to thank those of you who have been supportive
throughtout this difficult time in our lives. We had
so many people come
see my dad. He looked so handsome.
Special thanks to those who came to the wake, those
who sent flowers, fruit, food,
and cards. It's an
extremely painful time for my family, as my dad was a
huge part of our lives. There is an incredible
emptiness
and void in our hearts and in our lives. I
know time will make it easier to accept, but the void
will be there forever.
At
the wake, Jayden held his finger to his mouth as if
to say, "don't wake him up". Jayden immediately after
gave me a
huge smile and threw a kiss to his papi.
He's so amazing. I know my dad is with him always.
Jayden has been getting
slight head drops. They look
more like nods. I noticed a few here and there about 2
weeks ago and they've been happening
more lately. Last
Friday his doctor upped his afternoon meds. She said
it may be something, it may be nothing. Why take
the
chance. I think they're break through seizures. A
couple of days later, she upped the night meds. Of
course,
we're extrememly worried. But, Jayden has been
eating so much more and eating so many different
things, that it could
be affecting the meds.
His pediatrician changed his vitamin including iron, a
couple of weeks ago. I think that
has increased his
appetite. He eats practically anything he sees. We're
so happy about that. He has gained about 2 pounds
since
he's been home. His meds just may need to be
adjusted according to the weight gain.
He looks fantastic though. He's
very active and he did
well with his therapies on Wednesday. He also had some
hearing tests done, which Andy says he
did well with.
He's much more vocal and we're hoping the increasing
of meds will also help any internal seizures. We're
still
anxious about speech and hearing.
That's about it. Just trying to continue with life,
even with the painful void.
Please
say a prayer for my dad, that he's happy where
he is, for my mom to cope with the tremendous loss and
please continue
to pray for Jayden.
Thanks.
Love & blessings,
Andy, Jenny, & Jayden
FEBRUARY 11,2005
Hey everybody,
It
has been very busy here. We are going throug a rough time with everything going on but we will all be OK. Jayden has done
so much these past couple of weeks. Jenny & I have been very upset about the little head drops that Jayden has been having,
they seem to be start of seizures again. His doctor at Presbyterian in NY is very concerned and is adjusting the meds up,
tomorrow we will go up again. We are not happy about the med increase, but Jay may need it due to the fact he has been eating
so well, trying new foods and gaining weight. At the same time these past 2 weeks with the med increase we have seem some
new milestones, Jayden can now get up from the floor with grabbing onto something to pull him up, he can just stand up. Yesterday
he peed on the potty 3 times, we were amazed, he just pointed to his diaper and then the potty and I sat him down. Today he
again peed on the potty everytime, but after dinner he not only peed but pooped! We made such a big deal and he seems so proud
and happy about it. Jenny & I feel the increase in meds is clearing the fog even more. Jayden had 2 evaluations this week
for school and he did great, they feel he is much further along than they expected, they hope to have in school by mid march,
probaly 5 days a week for a few hours in the afternoon. He has shown some more definate signs of hearing things these past
few days. He also seems to understand when we talk to him more. Jayden is truly amazing. His attention span is getting longer
each day, and he is following directions and commands a little more each day. Jay is still trying to talk so much, it must
be so frustrating but it will come together soon. We just continue on everyday trying to do our best, and he moves forward
everyday. Thank you all for your support with everything! We love you all. Good night and God bless. Love Andy, Jenny & Jayden
FEBRUARY 15,2005
A belated Happy Valentine's day to all,
How's everyone doing? Jayden started taking valium
last night to try and help his anti seizure meds to work. It worked last time,Jenny & I and hope it will work this time. Jay
has been having head drops again, and they have have gotten a little worse. Yesterday while at his therapies at the hospital
he had one while walking and if I hadn't caught him he would have fell face first to the ground. Jayden is maxed out on his
meds now which are making him a little dizzy, his walking is very clumsy. He started his valium last night and this morning
was very clumsy and tired, but doing well. All these meds have so thrown off, tired and very emotional. I have only seen 2
or so small and one bigger head drop so far today. He will be on the valium for 3 days then we will ween him off over 3 more
days, hopefully the head drops will be gone. In addition to Jay being pretty consistant with going pee on the potty and poop
sometimes, we reached another milestone yesterday. Jayden ate pasta and fed himself with a fork for the whole meal, up untill
yesterday Jenny & I had to put the food on the fork and then he would pick it up and eat it. Jayden is still doing better
everyday, we have just it another bump with these head drops and hope to be past this soon and hope it is only a little bump.
He continues everyday to be so animated and comical. He also took a bath sunday night with out his special chair, we just
sat him down in the tub with whole bunch of toys and he took a nice bath. Jenny & I are so proud of him. Once again thank
you all for your continued prayer and support! Love Andy, Jenny & Jayden
FEBRUARY 21,2005
Good evening all,
Well
it has a busy week, Jayden is doing OK we have increased his seizure meds which have along with the valium have made him very
unsteady on his feet. The increase and the valium have seem to stopped the head drops but now we are seeing whenever Jay bumps
his head on anything even lightly it knocks him out for a second. He was leaning against the wall last night and slightly
tapped the back of his head on the wall and he blacked out and fell forward to the floor bumping his head. Jayden was doing
so good walking now Jenny & I must once again stand over him with our arms around him for every step he takes, it is very
tiring for us and frustrating for Jayden who was walking fine 2 weeks ago and now can barely balance himself. We will hopefully
end the valium tomorrow and see how things go, then maybe cut back on the meds. I will be taking Jayden to a hearing specialist
tomorrow to trya and get some more answers as to what is going on with his hearing. Jayden still amazes us everyday by forging
forward even if it is a little bit, he continues to smile and laugh, he so enjoys laughing and making us laugh by doing silly
things. Jenny & I get our strength from Jayden, we are running on empty emotionally & physically we are both drained, but
continue teaching, playing, laughing and most of loving our miracle Jayden. Just when we get down and don't think we can take
much more he starts making funny faces or doing a silly dance, or just gives us a hug or kiss. And that just gets our hearts
beating again and we focus on him and what we have to do. Jay has been kind of thrown off from his potty training which he
was doing so good at, we think all the meds have him lazy, so we will wait and see. He has been enjoying taking a bath in
the bathtub so much he comes upstairs every night takes off his clothes and points to the tub, so everynight we fill up the
tub, dump in the toys and let him play for 20 minutes or so. We will hopefully find out soon when Jay will be starting school.
We are looking forward to the warm weather when we can get outside and play more. Its no fun being couped up inside so much,
but hopefully by the spring we have all the seizure issues under control and we just enjoy and finally relax a little, just
a little would be nice. Thank you all for your continued prayer and support. Love Andy, Jenny & Jayden
FEBRUARY 27,2005
Good
evening,
Just a quick update of our week. Jayden has been
better with the head drops. He still has had some,
usually
provoked by a sensitivity to his head. He went
to a hearing specialist, who at first was not very
optimistic from what
he has seen with children who
have had meningitis. After performing an OAE
(otoacoustic emissions testing), he was very
pleased
and extremely optimistic. Although, the test does show
some hearing loss, he seems to feel there is enough
there
to work with. He has requested we have Jayden
evaluated for hearing aids. He was actually quite
annoyed that this hasn't
been suggested sooner. It's
obvious to him that Jayden is trying to communicate
and if he cannot fully hear himself,
than speech will
continue to be difficult for him. The doctor says he
sees some hearing loss with his ears, but hearing
does
bot only involve the ears, but the brain and brain
stem, all of which has been affected by the
meningitis. From
his perspective of the ears, he's
very optimistic. Only time will tell how much he can
process and hear. Since he is
still healing and does
show some signs of hearing, he told us to keep our
faith up. So, we have scheduled an appointment
for an
evaluation, which the doctor says may be just what he
needs to start talking clearer. He also says that
Jayden
may only need them for a couple of years. He
may not need them forever. He did say that he can't be
100% sure that
the hearing aids will be enough, as the
brain has a lot to do with the processing and that may
also be a factor. But
all and all, he was pleased with
what he saw and he told us to be hopeful. He is.
The valium is being tapered off,
so Jayden is much
more stable again on his feet. He's doing much better,
but we continue to watch his every move and
try to
keep him from bumping his head at all. He will be
evaluated for occupational therapy for the school and
he
has his 3 hour EEG evaluation this week. Hopefully,
his EEG will show much improvement with his seizure
activity.
Please
continue to pray for him and for my family.
Everyday is a struggle without my father and although
we're all doing surprisingly
well, we have many
moments of sadness and emptiness.
Thanks for the love and support!
Love & blessings,
Andy,
Jenny, & Jayden
MARCH 6,2005
Hello all,
Well another very busy week has past, and another up and down but good
over all week has past. Jenny & I met with the final therapist from the school so we are now going to meet this wednesday
for the final meeting, and Jayden will hopefully be in school very soon. We are very nervous but looking forward to getting
Jay into a school setting, we know he will benifit so much and is absorbing everything right now. He is still up on his meds
and we went up a little more on friday after we had a 4 hour EEG in NY on thursday we got some brief results on friday but
will get more info tomorrow. Jay is pretty steady on his feet again he is experimenting with little runs every now and then
and even jumping and hopping, and some spinning around. We still must watch his evey move like a hawk because he still loses
his balance from time to time and Jayden is still having the little head drops and head bump sensitivity. Super Jayden continues
to march forward through all of this everyday with a smile and laughs along the way, he even has a cold this weekend with
a runny nose and coughing but is still playing and learning all he can every minute. He is a little run down and cranky from
time to time, but hey aren't we all when we get sick. This coming week is also a busy one with the school meeting and on tuesday
we will go to St. Joes in Paterson for a hearing aid evaluation. We are hoping this is what Jay needs to hear better and that
will help him get his speech back. He has been trying so hard again this week to speak to Jenny & I, he had a few words slip
out. It is just so frustrating for all of us and hope to be able to just talk together soon. Jayden is gaining weight at a
good rate now and is really enjoying food again. He is getting stronger and gaining muscle mass. He is following direction
better everyday and his attention span is growing longer. Jenny & I are noticing new things everyday along with Jay's therapist
at Children's Specialized Hospital who continue to do an amazing job every week. Un fortunatley we will not make any therapies
this week because tomorrow we will let Jay rest due to this cold he has had, and wednesday we have the meeting at school.
But we continue to do even more at home. We continue to thank you all for your amazing continued prayer and support. Next
month will be one year since Jayden got sick and we would have not made it this far without your prayers, support and help.
We thank God and all the amazing angels who watch over us. We continue to hear horrible stories about people stricken with
this disease, and try to inform people about meningitis. We ask that you learn all you can and inform yourselves and families,
you can visit our friends at www.meningitis-angels.org for information. And Jenny & I will be selling bracelets that say "meningitis
awareness" to raise money for more research and to inform people. If you are interested please contact either Jenny or me,
I will probably add a link to the site for ordering info as soon as I can. Thank you all. Love Andy, Jenny & Jayden
I also
ask that you keep a very close friend of mine whom I went to school with and work with in your prayers. Sean Solomon lost
2 of his children in a tragic home fire on this past friday. Please pray for Sean and his family during this time. The family
is also in great financial need right now, loosing so much. I will post information on how to help the Solomon family as soon
as I can. But right now please pray for them.
MARCH 13,2005
It has been a busy week. We had our IEP with the
school
Jayden will be attending. It went well and once
all the paperwork is finalized, he may start as soon
as this week, sometime.
He will have a one-to-one
aide, who will be his shadow and assist him with
walking up and down steps, going to classrooms
and
will watch him and protect him if he should have any
head drops. It will be a 2 1/2 hour program, five days
a
week. We are extremely nervous and scared to leave
him with strangers, but this will be good for him and
for us to adjust.
He had his hearing aid evaluation,
which didn't go well. The audiologist seemed to say
the opposite of the specialist.
This audiologist
thinks Jayden hearing loss is more than mild and that
hearing aids may not work for him. She suggested
cochlear
implants. All and all, we were not happy with
this evaluation. We will look into someplace else that
specializes in
hearing with children. We may look into
NY or maybe even CH in Pennsylvania. The hearing
doctor and the audiologist
at Children's, both, feel
he has hope with hearing and speech, where as this
audiologist from St. Joe's didn't seem
so optimistic.
So, we'll look again for more thorough answers. The
biggest issue is also the seizures, which affect
his
hearing processing, speech, and hearing test results.
His doctor told us that his EEG is still very active,
but
not worse than it was in November. She says there
is still lots of progress to make and the seizure
activity does affect
his development. She is pleased
to hear all the improvements he continues to make,
despite his activity. Jayden had
a cold most of the
week, so he missed therapies. He's very active,
running jumping, basically scaring us to death, but
it's
great to see. He's also very vocal and continues
to try to communicate.
That's all for now.
Love & Blessings,
Andy,
Jenny and Jayden
MARCH 20,2005
Howdy all,
Well we have had our ups and downs and this weekend was sure bumpy.
First off Jay had a good week, he did not get to start school on wednesday due to some paperwork problems. But he will be
starting monday the 21st. On saturday morning Jay was having head drop seizures almost every five minutes, it was really bad.
We contacted his seizure doctor, her assistant called us back and told us to administer Diastat right away, it is a rectal
volume. Jayden's head drops stopped but it made him so weak and wobbly and emotional. He kept falling down and could not stay
still, he would laugh then cry, get angry, silly it was a very long rough day for us all. And then this morning he woke up
and was still a little wobbly on his feet but he was much better. He was drawing circles and coloring things, even usig his
right hand at times to color. Jayden for the first time completly by himself got out of his pajamas, picked out his clothes
and dressed himself, he had been doing good with assistance but he did it all by himself today. The biggest task has been
his socks, but he used both hands and got them over his toes and pulled them up. Jenny & I are so proud of him. We were so
upset and down yesterday and then today he is having such a great day. He is very vocal again today trying so hard to speak,
we hope to out something soon. We are waiting to hear from a Dr we contacted from Beth Isreal in NY. We started watching sign
language DVD's yesterday and Jay did very well with some basic signs. We just want to be able to communicate with him. This
week will be interesting with school, but we know Jay will do great, we are just so nervous because he still have little blackouts
if something touches his head. I will also be in the Police Academy for the next 7 weeks, so Jenny had to take off from work
and will be working from home while watching Jay, it will be a little tough but we can do anything! We just may be calling
some of you for some help during this time. And its not like we can lose our minds, they are already gone, long gone! Thank
you all for your continued prayer and support. We love you all! Love Andy, Jenny & Jayden
MARCH 21,2005
BACK TO
SCHOOL
A real quick update, Jayden had his first day of school today. He did super, much better than Jenny & I did. Jayden
was fine he went with his teacher Mrs Judy and aide Joanne right into class, sat down with his classmates and paid attention,
imitated the other kids, and really seemed to enjoy the time there. We did not know what to expect, neither did the teacher.
But Jayden once again came through with flying colors, should have we expected anything else? Jayden has a aide by his side
at all times, she seems very caring and looks like her and Jay are going to get along just fine, he gave her a kiss today.
His teacher was very impressed with Jay's first day. But most of all Jayden really enjoyed today and Jenny & I coul not be
anymore proud of him! We have nervous wrecks for weeks about this day, but now we look forward to Jay learning and getting
back into a normal routine. The teacher is using sign language and body language to communicate with Jay and it is working
just fine. The journey continues on, and today we really moved forward. Please don't forget that todays milestone was acheived
because of all of you, you are all a very big part of this. Thank you so much! Love Andy, Jenny & Jayden
There are new
pics added from the 1st day of school.
!MENINGITIS AWARENESS WRISTBANDS ARE AVAILABLE!
******YOU
CAN FIND OUT HOW TO ORDER WRISTBANDS******
PLEASE GO TO THE WRISTBAND INFO PAGE
MARCH
27,2005
Happy Easter!
Jayden is adjusting to school quite well. He's already
a hit with the teachers at the school.
He was very
excited with his easter basket and chocolate filled
eggs from school. His teacher says he's a school kid
and
she can tell he's been in a school setting before.
Thank you Union Con! We miss you!
We should be hearing from his
epileptologist this week
to decide if we are changing his Keppra medication. He
still continues to get the head drops
with or without
hitting his head. I think the Keppra is causing the
head sensitivity and his doctor is realizing that
this
medication may not be helping him anymore.
Tomorrow Jayden has an appointment with Dr. Jane
Madell, out
of Beth Israel. She is a hearing
specialist who was referred by a very good friend.
Thanks, Marci. Hopefully, she will
get some answers
regarding Jayden's hearing and speech. She had no
appointments until May but once she heard Jayden's
story,
she wanted to see him ASAP! I already like her.
Please say an extra prayer that we finally get some
answers as to what
is going on with his hearing and
speech.
I just wanted to thank you all for all the good wishes
and prayers you
always send our way. This Easter is
very special for us and also very difficult. Today was
my father's birthday, so
I'm filled with mixed
emotions. Happiness to have Jayden here and enjoying
this holiday with us and sad that my dad
is not here
to enjoy it with us. He will always be in our hearts.
I've attached 2 very important pictures of Jayden,
that can be seen on the home page.Thanks be to God and all the prayers that have been said in Jayden's name. You'll see why
these pictures are so extra special.
God bless you always.
Love & blessings,
Andy, Jenny, and Jayden
APRIL
3,2005
Howdy yall,
First off we are all doing OK. How are you doing? The Meningitis awareness bracelets are available
on the website, goto the page for bracelet info at www.jaydensjourney.com there is a picture and info about them. Jenny &
I have 100 bracelets and are selling them for $5 if you are interested please let us know. It has been a very bumpy week,
but we are use to them now although they still are not easy. We met with a great Dr and her staff on monday in NYC. She feels
we need to act immediatley before any more time goes by and get Jay hearing aids, she feels he has profound hearing loss and
something should have done alot sooner. We are hoping to see some response when we get the hearing aids next week, we will
also have to possibly consider the cochlear implants, but hopefully we can just get Jay to hear one way or the other, that
is our only concern. Jayden has had a cold all week he missed 3 days of school, he is finally better today and will hopefully
goto school tomorrow. We are so happy with the way school is going and see such a change in Jayden already. Jaydens is on
a new medication limictal to help with the head drop seizures, he has been started at a very low dose and will be built up
over a 3 month period at the same time reducing his keppra. It will take some time before this will level in his system, we
have seen some improvment and some worse days so far, so it will just take time to get it all straight. As much as Jenny &
I want Jayden so better right now we will do whatever we have to and endure it all. It is very tough but just when we are
about to lose our minds Jayden always seems to console us by giving us hugs, and kisses, and making us laugh, he seems to
know how hard this all is and reminds us it will be OK. He truly is amazing. We are so happy to see the warm weather coming,
can't wait to start getting outside more and playing in the backyard, and going for more bike rides and walks. And soon we
will invite you all over for a pool party and barbeque. Yippee! Well gotta go the academy is keeping me busy i have to finish
notes & shining my shoes so I can relax and watch Desparate Housewives on TV later, how domesticated I have become. Thank
you for your continued prayer & support. Love Andy, Jenny & Jayden
APRIL 9,2005
Thursday, April 7th was exactly
one year since Jayden
was hospitalized. Unfortunately, our internet service
was down, so I was not able to send this
e-mail out
that day.
I figured, I could either hate the day or celebrate
it. so that's what we did, celebrate.
Our
morning started off with a trip to Stride Rite,
for new sneakers, which Jayden loved. The sales woman
was a sweetheart.
(Shout out to Stride Rite in
Clifton) Jayden was so cute staring at his feet and
smiling. It was time to put away the
Shaq sneakers we
bought, when he was hospitalized to keep his feet from
collapsing while in the coma-state.
Next,
I brought cupcakes to school, which Jayden did
not expect and read his class a story. Jayden was so
happy and so were
his classmates.
After dinner, we hung out on his jungle gym where
Jayden slid down his slide and climbed up to his
club
house. He was amazed to be up there again. So were we.
Soon after, my mom, my brother and his family came
over
for a "To Life" cake. Jayden was very excited to
see his cousins. He blew out his good luck candles and
ate his whole
piece of cake. Thanks to Brenda, our
wonderful neighbor who took some pictures of us.
Jayden has been given a second
chance at life and
although the road is long and hard, we're grateful to
have that road.
Thanks you all for the
amazing support this past year.
We love you all.
Please enjoy the picts I've posted of the day we
had.
Love
& blessings,
Andy, Jenny, & Jayden
APRIL 19,2005
Howdy yall,
Sorry its over a week now since we have updated.
It has been very busy and very bumpy. Jayden is fine, Jenny & I are burnt out. 2 weeks ago Jay started a new anti seizure
drug Limictal, we went up on it last week and the next day Jayden had a nasty rash on his face. We were told this might happen,
the doctor stopped the drug right away. Jayden was taken to his pediatrician just to check everything and it was OK. The next
day the rash got worse and spread over his body, His eplileptoligist was contacted again and she was concerned so we took
Jay back to the pediatrician who felt it might not have been drug related but the 5th disease, which is like the measles or
chicken pox and was passing out of Jay and not to worry. We were sent for blood work to be sure. At the same time we took
jay for his hearing aids, on the day Jay got them we had been running late into NY and had to rush for 2 appointments, Jay
was not feeling good at all. We got the hearing aids and noticed some changes in Jay with the way he focused on things and
was more vocal and repeating at times, but some times nothing. At least Jay keeps them all day. They are squeaking so we will
go back tomorrow to get them checked and possibly a new mold made. Also tomorrow we will travel across NY uptown to Jays eplileptoligist
who wants to see Jay and figure out what is going on. Jayden his still having headdrops & sensitivity issues. The blood results
came back negative for the 5th disease, but showed very good results on other things that were checked in his blood. So we
are confused and will possibly start the medication again to see if the rash comes back? Jayden is doing great in school and
his teacher, Aide & therapists are very impressed, Jenny & I are very, very happy so far with the way things are going in
school. And Jayden got a new speech therapist today and is working well with her. We are just noticing that Jay seems to have
hit a wall with progression lately, it may be due to the med changes or him being sick last week or a combination? Jenny,
Jayden and myself are all frustrated that we cannot communicate better, we are so unsure of his hearing and have used basic
sign language to get by but we feel we need to all learn sign language as a primary means of communication until we know where
Jays hearing is really at, and that may be some time. I want to thank everybody for your support with the bracelets, we sold
100 of them and raised $500 that will be donated to meningitis awareness, I have ordered 100 more and should have them
in a week or so for those still interested. Thank you all for your continued prayer & support. We have been a little down
lately but its nice to know you are there for us. Love Andy, Jenny & Jayden
APRIL 24,2005
Hello all,
Gonna keep
it short and sweet tonight. Jayden is doing good now that we have restarted the Limictal drug(anti seizure) His doctor feels
the rash was not related and that it is the right drug for Jay. Jayden was his most vocal ever today, Jenny & I think he was
very close to speaking a couple of words today, and he was mouting a couple without sound today also. We are hoping that getting
the drugs right, with his brain healing, and the hearing aids allowing him to hear a little it will come together. He steered
his electric car around the block yesterday, I am so proud he is almost ready for NASCAR! He is still having head drops, and
head sensitivity issues, but hopefully soon they will resolve. Thank you for your your continued prayer & support. Love Andy,
Jenny & Jayden
I ask that you also pray for the family of a friend & co-worker of mine, Billy Lees who was tragically killed
in a motorcycle accident this past week. Although I am saddened all I can do is smile when I think of Billy. For the 16 years
I have known and worked at the Sheriff's Dept with Billy, every time we were together we laughed, joked, played pranks and
just had a good time. Billy enjoyed life and gave so much to so many people, I thank you for the laughs. Untill we joke again
my friend Love ya -Andy
MAY 8,2005
Happy Mother's Day!
Jayden is doing well. He's still getting head drops
quite
often. We have added Lamictal 2 weeks ago, very
gradually. His new ear molds have come in this week
and he has been
extremely vocal. He says "mom and no"
very clear. He has attempted thank you, hello, more
and other words. It's still
extremely frustrating but
we take it one day at a time. His appetite is very
good and he's doing well in school. He
has a wonderful
teacher and great aids.
We went to the zoo Monday. He was great and very into
the animals.
All
and all, he makes us laugh and smile everyday. We
deal with the frustations as best as we can.
I just want to congratulation
Andy, who will be
graduating this Wednesday, from the academy. I'm very
proud of him that despite all the stress, he
managed
to complete this course. It's a huge accomplishment.
So, congrats my love. You've done a great job.
Love
& blessings to all,
Andy, Jenny, & Jayden
MAY 15,2005
Howdy yall,
How's everybody doing? We are doing good.
The weather is getting nicer, so we can spend more time doing fun things outdoors now. Jenny & I have been dealing with things
better latley, and Jayden has been too. We are all calming down and learning alot more patience together. Jayden is doing
very good with the new medicine again, limictal. He going up a little each week and we are seeing alot more improvement in
Jay in many ways, such as he is very vocal again with new sounds everyday. He enjoys making sounds on the phone and with his
toys. When he wants Jenny he clearly yells mom or mama. He is doing great with everyday problem solving and just figuring
things out. He plays very nicely with his toys and his attention span is getting a little longer. He is doing great driving
his car around the block, whether he is driving his electric car or peddeling his pedal car, he steers all by himself now
with no help. He is doing great when playing catch. He sometimes needs to be reminded to use his right hand, but he sometimes
only uses his right hand. We don't know whats up with the hearing again, he seemed to be responding to sound when he first
got the hearing aids, now its not so often. He tries so hard at times to speak to us. Hopefully soon it will come together.
The pieces are there Jayden just has to put them together. And we are trying to help him the best we can. It will also be
nice to get back to our routine with Jenny going back to work days, and me back to nights again. I wish to thank all my Academy
classmates from Passaic & Bergen counties for there help, we had some fun there, good luck to you all! And Jenny will be getting
a well deserved and even more needed break later this week, I am sending her to Florida for a 4 day spa vacation. She needs
to recharge the battery and relax a little hopefully. Don't worry jayden & I will be fine we will survive on pizza & beer
and hang out at Go-Go bars. I'm sure Jenny will be calling every 10 minutes. Good night & God bless. Love Andy, Jenny & Jayden
MAY
30,2005
Happy Memorial Day!
Jayden has been doing well, His Lamitical is still
being increased and he appears
to be tolerating it
well. Although we still see head drops, some days more
than others, we have seen lots of other good
stuff.
He's much better with potty training. He attends well
for longer periods of time to various things. He's
still
very vocal, even though hearing is still
unclear.
He had blood drawn on Saturday to check his seizure
meds levels.
He, as usual, was a trooper. He flinched
a little but was happy to get his "brave" sticker.
He's eating well and
continues to gain weight. His
favorite foods being Honey Nut Cheerios and pasta (not
together).
He did great
with speech this past week. So we
continue to pray for him to talk to us again soon.
All and all, Jayden continues
to improve despite the
head drops. He's much more focused. He gets up the
steps without any difficulty and is showing
more
interest in feeding himself.
He continues to make us laugh all the time, which
shows us that his personality
is all there, minus the
funny comments he'd make.
Love & blessings to all,
Andy, Jenny, & Jayden
JUNE
5,2005
Hello to all,
Well it has been an interesting past week. Somethings get better, some get worse, some go forward
some backwards. Most important Jayden is doing better overall. We have had medicine changes again, we had to lower his depakote
because his blood level was too high, at the same time increase the new drug limictal, Jayden was having more head drop seizures,
and his sensitivity was really bad not only for anything brushing against his head, but hitting his hand or knee he would
drop out for a few seconds and slowly come back. We thought we were past these type of seizures. We have to once again hold
on to him at all times because he could drop at any moment. Today we saw big improvments from the past few days, less head
drops and almost no seizures due to hitting his head or anything else. We wanted to take Jayden to a local carnival this weekend,
but could not chance it due to all the seizures. We drove by one and he lit up and started clapping, he loves the rides, but
we could not take the chance of him getting hurt. We did have alot of fun playing on the gym, and the huge inflatable fun
house in the backyard. Jayden also enjoyed driving his electric car around the block many times. we also had a very nice visit
with a neighbor Brandon who goes to school with Jay, they played very nice together and Jayden really enjoyed himself. Jayden
just enjoys doing kid things. We watched some fun movies, 3 stooges, Mr Bean, Spongebob Squarepants and he loves to laugh.
Jaydens sense of humor is really great, he enjoys comedy and he enjoys being comical. We don't know where he gets it from.
Jenny & I just want to treat him just like any other kid and not make him feel isolated, but untill the seizure issues are
better controlled we have to be so careful, we don't want him to get hurt and go backwards. So we make it fun for him right
here. We set up a small pool on the deck today and when Jay saw it his expression was pricless. He stayed in it and played
for the longest time. It is hard to deal with and accept so much of what has happend and still happening, but when we see
Jayden so happy and just being a kid having fun it makes it a little easier. Hearing is still questionable but Jayden is very
vocal and trying more sounds and a few more words. We just don't know? Jenny & I are learning more sign language and just
ordered flash cards for signing. His speech therapist at Children's Hospital & Oakview school are doing a great job with Jay
and are very proud of his accomplisments so far. His teacher & aide are the best, and are amazed with Jayden's progress. Like
I said at the beginning it has been a rough week with some bumps and setbacks, but in the big picture as always Jayden is
doing an incredible job through all the obstacles. His spirit is strong and he is determined. Mentally he is moving forward
at a very good pace now. As well physically too, a little slower but still getting stronger and more stable each day, he still
has to be reminded to use his right hand at times, but it is much stronger, steady, and he has better control of it now. We
see Jayden is more emotional now probably due to the meds and changes. Sometimes it is difficult to deal with, but we are
adapting the best we can, we hope? Sorry for rambling on but this is therapy for me. Thanx for listening, Thanx for your continued
prayer & support, Thanx for everything! Just remember laughter is the best medicine, try and laugh as much as you can everyday.
I'm gonna watch Dave Chapelle now and laugh! Good night & God bless. Love Andy, Jenny & Jayden
JUNE 16,2005
Real
quick sorry we haven't updated in few days. Its
just been real busy. Jaydens seizures have been
changing, some days
real good, others pretty bad. But
we will get through it. More importantly today was a
huge milestone for Jay. He graduated
from school! We
are so proud of him and all of his amazing
accomplishments. Jenny, Jayden & I wish to especially
thank
his teacher Mrs. Judy and his aide Joanne, and
also Angela for all they have done with and for
Jayden. We wish to thank
everybody at Oakview school
for there support & help. He has really come a long
way since he started school. We wish
to thank and
congradulate Jays classmates, he has learned from them
too! You should all be as proud as we are, for you
are
part of the reason why Jayden continues to do amazing
new things everyday!
Thank God, all the Angels that watch
over us, and you!
Love Andy, Jenny & Jayden
CONGRADULATIONS
JAYDEN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
JUNE
21,2005
Happy Belated Father's Day to all the fathers out
there.
Since the last update, Jayden continues to show
progress.
He's very vocal and getting some more sounds
and some words out. He said "that" and "ok". He also
sounds much more coherent
with certain things he
mumbles. He still has the head sensitivity and cannot
be touched on the head, not even lightly.
The lamictal
continues to be increased.
We saw a doctor who is in neurotology. He will be
checking Jayden's
inner ear and cochlear through a CAT
scan and sedated MRI. We will schedule that as soon as
possible to see what's going
on internally with his
ears. Although from the reports that he read from
hearing tests that have been done, he says
Jayden can
hear, but the question is how much. So, we hope he can
figure out what's going on and what needs to be done.
We
liked him oversall, so we're hopeful he can help
Jayden.
All the best to you all. Please continue to pray for
Jayden.
We're really concerned to see the seizures and
head-sensivity. We're hoping this will soon pass.
Please check out
the upcoming events page from the pull down menu for info on this years meningitis walk on 10/2/2005 in Wayne NJ. Hope you
can join us. Jayden will be walking this year! He was confined to his wheelchair and unable to walk. But this year he will
walk! On his own! Please join us for a great day, a great cause, and meet some amazing friends!
Love & blessings,
Andy,
Jenny & Jayden
JUNE 27,2005
Had a great weekend! Pictures are better than words. Please goto the newest pics page
and follow the link for pics. http://www.geocities.com/jaydenmiracleboy/jaysnewpics.html . Enjoy
JULY 4,2005
Happy
4th of July!
Andy, Jayden and I hung home this long weekend. Jayden
had a ball in his pool, the big pool, and his
bouncy
pit. We were amazed at how well Jayden was walking
across the bouncy pit. He would walk side to side with
slow
steady paces. He had no trouble keeping his
balance. He would make himself fall down and get right
up without any assisstance.
He couldn't do that
before.
His seizures are good one day, bad the next. It's
never consistent. He's still vocal
and showing great
improvements in speech at school. He's a hit at summer
school, which began this week as well.
A
special thanks to my mom for staying with Jayden
Saturday night, so that Andy and I could enjoy a
anniversary dinner
together. Our 8th anniversary was
Wednesday. Andy had to work that night.
As usual, thank you for all the prayers
and support.
Love & blessings,
Andy, Jenny, and Jayden
JULY 10,2005
Howdy Yall,
How's everybody doing?
Well another week gone by, another good one. Jay is doing good in summer school, having fun and relearning basic things again.
Jenny & I are now beginning to get Jayden back into a "normal" life again. After more than a year of everything being scheduled
and the same routine everyday, which kept Jay calm and in a routine. We are now just doing things to break the same day routines.
We took Jay to see Madagascar at the movies this week, he loved it and sat through it with a little impatience, but most of
all right in the middle of the movie he told us in sign language he had to go to the bathroom. He went on the potty and came
back and finished the movie. We were so proud of him. We had some friends over this weekend, its hard to have alot of people
aroud because it reallt throws Jayden off. But he did really good and really enjoyed playing with Ariel & Nick, thanks for
playing so nice with Jay, he just wants to run around and do everything like the other kids, and soon, very soon he will.
We just hae to be so careful with the seizures and falling down. We all did good. Thanx to all my girls for all the food and
a great time! Jenny showed Jay some videos of him before he got sick, running around, talking, singing and just having fun,
he really enjoyed them and was very vocal trying to speak. We know it is important for him to see to help him remember things,
and hopefully to help him speak again. I still cannot watch these videos, because hearing my sons voice hurts too much. It
has been over a year since I have talked with my son, that was always the highlight of my day, every night we would lay in
bed before going to sleep and just talk about our days and everything. I just miss being able to have a conversation with
my son. But I have faith that soon that day will come when we can talk again, and when jayden can talk again we will probably
stay awake for days just catching up. I can't wait!! Jenny & I are so proud of him and all the amazings things he does on
a daily basis. He truly is a miracle, his drive to get better and stronger everyday. He never lets up, and most importantly
he always, always smiles throughout all of this. Jayden is and always will be my hero! So thank you all again for reading
my rambling and being such a very special part of our lives. Thank you for your continued prayer and support. It really matters!
Thank you! Thank you! Thank you! Love Andy, Jenny & Jayden
JULY 17,2005
Real quick,
Jayden's balance and steadiness
has improved greatly these past few weeks. We are still having seizure issues. His concentration and memory is outstanding.
He is so vocal, its like the words are right there, he will put it all together soon! We are so proud of him! We are looking
into Hyperbaric oxygen therapy, if anybody knows anything about it, we have heard good things for stroke patients. Good night
& God bless. Love Andy, Jenny & Jayden
JULY 31,2005
Howdy yall,
Sorry its been 2 weeks since the last update.
Its been a roller coaster lately. Jayden completed summer school this past week, he did great, learned alot and had a lot
of fun. Jenny & I would really like to thank Jay's teacher Ms. Silva, his aide Angela and all of the staff at Oakview school,
you all have done so much, Thank you! We cannot wait to start again in september. Now with a little break we plan to make
some day trips, down the shore and to all sorts of fun and learning places. If you have any good ideas please forward them
to us, we are looking for as much to do as possible. We have spent alot of time at Doctors and tests these past 2 weeks, and
more to come. Jay is doing better overall but his seizures are changing again. He is having less headdrops but the head sensitivity
is worse and some of his headdrops cause him to black out for a few seconds. He looses all muscle control and falls down hard.
So we must again hold onto him every second of the day. Not that we mind being so close to that beautiful smile of his. We
should know some more this week from the MRI Jay had, we'll keep you informed, so stay tuned. Until then Thank you all for
your continued prayer and support. Love Andy, Jenny & Jayden
PLEASE VISIT WWW.MENINGITIS-ANGELS.ORG FOR INFO ON THE UPCOMING
MENINGITIS WALK. IF YOU CAN WALK WE WOULD LOVE TO SEE YOU THERE, IF NOT PLEASE SUPPORT THIS GREAT CAUSE. IT IS REALLY A GREAT
DAY, WITH SOME AMAZING FRIENDS, GREAT FOOD, A BEAUTIFUL WALK. PLEASE SUPPORT IF YOU CAN. JUST LOOK FOR THE LINK FOR THE 2005
MENINGITIS WALK. You can goto the UPCOMING EVENTS page at the top of this page and find the direct link. THANX
AUGUST
7,2005Hey yall,
We are packing to head out to NY Presbyterian Hospital for a 2 day, 1 night vacation. Sounds like fun huh?
Well we're gonna make the best of it. Jayden had a rough week, his seizures got really bad, and were very strong. We had to
put him on valium for 4 days to relax his seizures. It controlled the seizures but made him weak on his feet. As he came off
the valium he started the seizures again. Jayden will be monitored for 24 hours to check his seizure activity. Even through
all of that this past week Jenny & I have noticed huge improvements with Jay using his right hand & fingers, he is using his
fingers much better grasping & pinching. He still continues to amaze us everyday with his determination. We should find out
a little more this week from the tests last week about Jays hearing. They want to do another sedated ABR. They are really
unsure about his hearing loss, whether it is from his ears being damaged, his brain stem, or him just not being able to process
sound correctly in his brain. Is he a candidate for the cochlear ear implants? It is all still so overwhelming, and just when
we think we are going to loose our minds Jayden always just smiles, pulls us close and gives us a big tight hug & kiss, and
just looks at us with a look that says everything is gonna be alright. And it is gonna be alright because we have each other,
and thats all we need! Good night & God bless. Love Andy, Jenny & Jayden
HAPPY BIRTHDAY to my(Andy's) mom! All I can say
is thank you for so much. I love you!
AUGUST 23,2005
It's been awhile since an update. We apologize. Our
internet
service has not been reliable these days.
Anyway, Jayden had his EEG and unfortunately there is
no improvement.
His EEG is just as active as it was in
November. But despite this, Jayden continues to
improve. That is all that matters.
His doctor would
like to clear this activity but she says he is still
healing and nothing can rush or speed up his brain
healing.
She was pleased to see him so much better and
alert and growing up. So we were disappointed but kept
our chins up. A
fourth medication was added
temporarily and we didn't see much change, but the
last couple of days have been much better.
We're
crossing our fingers and hoping to reduce him off some
of the other meds.
Jayden also saw his neurosurgeon
last week. He was
very pleased with Jayden's MRI, He says his brain is
looking good and that he doesn't see any major
areas
of damage. The shunt has been working properly. His
only concern is the seizures, which he feels is
interferring
with his hearing and speech, not to
mention all the meds.
We also heard from the hearing doctor who initially
read
Jayden's report which said that his cochlear
showed ossification, Basically, it's not uncommon for
the meningitis infection
to create bone in the
cochlear making it difficult to hear. But when he saw
the CAT scan images, he did not see the
ossification
the radiologist reported initially. So we were very
happy to hear that. Jayden still needs to have a
sedated
ABR to see where the hearing breakdown stems
from. Could be in the inner ear or could be
neurological, which is what
Andy and I think. He still
is up and down with the hearing. He wears the aids but
we really don't know if they're helping
at all. The
ABR will tell us much more and than we'll see what's
next. We feel the seizures are the biggest problem
and
is affecting his hearing process. The meds, I'm sure,
are affecting his speech.
All and all, the usual rollercoaster
ride, but Jayden
smiles, grows, and laughs each day. It's all that
matters.
I've attached some recent pictures
of Jayden. He is
growing so tall.
I would also like to wish Andy a very happy birthday.
Unfortunately, he's working
tonight but we'll
celebrate his birthday and our anniversay tomorrow at
the beach.
All the best to you all. Please
keep the prayers
coming. They are moving mountains and will continue
to.
Love and blessings to you all,
Andy,
Jenny, and Jayden
AUGUST 29,2005
Hello to all,
The roller coaster ride continues. Jayden had a tough couple of
days this past week. His seizures got really strong where his whole body would loose all muscle control, where before it was
mostly his head. He collapsed a couple of times to the ground very hard, and one time while standing in front of his art board
trying to color. He fell right into it and the whole thing fell with him, he got a bloody nose & lip. He was scared and upset
and seemed to be frustrated about it, he did not want to stand on his feet the rest of the day. The doctor put him back on
half ofthe morning dose of clonzepam. When he was on a full pill he was a zombie, and we expected the same thing to happen.
Dr. Leary wants to increse slowly this time, like with all of Jay's meds. To our amazement Jayden so far has not zombied out
and seems to be responding pretty good, the seizures seem to be getting a little better and less frequent each day. And less
as the day goes on, the mornings always seem to be the worst. But SuperJay continues on. We went to Sandy Hook beach again
this past wednesday and Jayden had a great time in the water and on the sand. He has been very active, riding his pedal car,
bouncing in his inflatable bouncy house, playing on his swings, slide and climbing into his clubhouse. His walking is getting
a little more steady again. He continues to shake alot, but the more he does the steadier he becomes. We have been playing
alot of catch and kicking balls. But his favorite thing is just sitting on the floor playing with his cars( I am so proud
of my boy). Well thats all for now . Thanx for all your continued prayer & support, it still helps everyday!!!!!! Love Andy,
Jenny & Jayden
SEPTEMBER 4,2005
HAPPY BIRTHDAY JENNY!
Hope you are enjoying your holiday weekend, we are enjoying
our time together as a family. Please pray for those affected by hurricane Katrina, and if you can please support the Red
Cross. We were thrilled to hear from our good friends the Vigee family from New Orleans, who got out before the storm hit.
If there is anything we can do just ask. And once again Happy Birthday to my beautiful wife, and the best mom ever Jenny.
I hope all your birthday wishes come true. Good night and God bless to all! Love Andy, Jenny & Jayden
SEPTEMBER 18,2005
Hello
all,
First off how's everybody doin? I know its been 2 weeks since an update, sorry. With Jayden back in school, and so
much going on we have to get used to a new schedule now. We are seeing slight improvments in Jayden's seizures, but that
is with the increase in Limactal, we are also seeing more unsteadyness and trembling. We hope to start going down and getting
rid of some meds soon, he is on too many. We have one good day, then the next is a rough one. We are still awaiting to schedule
the sedated ABR to find out more about his hearing loss. We had 2 definate responses to sound this weekend. I clapped to get
Jay's attention and he was looking down at the time, and he jumped to my clap. Today in the car a loud motorcycle rode up
next to us, Jayden began to make a very loud revving sound, imitating the motorcycle. We had a fun weekend, we went to Turtle
Back Zoo yesterday. It was sponsered by Essex County Specialized Childern's Services, it was hot but Jay seemed to enjoy the
animals. Today we went to a craft show in a park in Montclair where Jayden ate a hot dog. Then Jenny & I took him to his
school playground and let him ride his new Orange County Choppers Big Wheel, he peddaled and peddled like crazy, and had a
blast. Just when we thought he was tired he wanted to walk around the lot, then play on the slide, and climb the jungle gym.
Tonight for the first time in along time Jay just really walked around the living room(which is heavily padded). He usually
crawls, since he has been having so many seizures and does not enjoy falling, and usually Jenny & I don't encourage him to
walk alone because we are so afraid of the seizures. But tonight he was steady and confident and just wanted to be on his
feet by himself, I cannot tell you how nice it is to see Jay walking on his own, Jen & I jumped everytime he would stumble
the slightest little bit, but he never needed our help. We were very proud of him, and you could tell he felt pretty darned
good about it too! Climbing the mountain slowly, we are getting there in this journey. Its the journey that matters, not the
end or begining. Well back to work and Jay's back in school tomorrow, which he is doing very good in. We really are so proud
of him every day, every minute.
Love Andy, Jenny & Jayden
HAPPY BIRTHDAY TO MY GODDAUGHTER KAYLA!!!!!!!!!!!!!!!!! Luv
ya
SEPTEMBER 25,2005
The week started out kinda rough with Jayden getting
hurt in school on Tuesday. He stayed
home on Wednesday
and had allergies the next couple of days. He stayed
home from school to recooperate. He had a doctor
appointment
with his epileptologist. The plan we will
follow is replacing his temporary drug, klonopin, with
clobazam, a drug from
Canada. We had blood work drawn
on Saturday to check his current levels on all his
meds. In a about a week, the doctor
will get all the
results and most likely reduce Jayden off of one of
the seizure meds, depakpote. He is on 4 seizure
meds
and an amino acid liquid. We all feel that some of
these meds may not be working. He's still getting
seizures,
so reducing of one meds while increasing
another and eventually tapering off another med is the
plan. Hopefully we can
get him to 2 meds only. We
could have gone drastic and reduced all and tried
another but we did not feel comfortable
with that.
Gradually we will figure out what works and what
doesn't and get rid of those.
Just want to remind
everyone about next Sunday,
October 2nd. The Meningitis Angels Walk will take
place. Those who cannot walk, please donate
through
the meningitis-angels.org web site.
I also want to thank my mom, Laura, Jessica, Keith and
his beautiful
boys, Judy and her husband, and Aurora
for spending the day on Saturday with us. Jayden had a
ball. It was great to
see some of Jayden's original
therapists again. They seemed very pleased with
Jayden's progress. Jayden remembered them
all.
Well, that's all. Have a great week. Thanks for the
continued prayers.
Love,
Andy, Jenny, and Jayden
OCTOBER
2,2005
Howdy Yall,
We had a wonderful day today at the Alexa Taylor Senyk Meningitis Walk-A-Thon in Wayne today. Last
year Jayden was confined to his wheelchair and this year Jayden started out the walk on his own two feet, then got tired and
wanted to be in his stroller. He was able to run around a little and have some fun this year, and next year will be even better.
It was a day spent with some beautiful people. Thank you to Frankie Milley founder of Meningitis-Angels.org for all you and
the organization have done for so many people. It was great to see the Senyk family on this emotional day, Jayden had a great
time playing with boys yesterday let's get together again soon. And of course spending time with Kate and our favorite Angel
Carye was nice. Thank you to everyone who supported todays event, Outback steakhouse in Wayne for all the wonderful food,
The Passaic County Sheriff's Dept Mounted squad(everybody loved the horses again) and Patrol for traffic control while we
walked.Thanx to the PCSD Explorer Post 1013 Thanx to everone involved! Well in addition to the great weekend we've had friday
was the first day in a very long time Jayden was seizure free for the day, saturday as well. Jenny & I Coud not have been
happier. Today though we saw 2 small seizures that are a little different than usual. Are they changing? was it due to the
busy weekend, or the heat today? We will keep a very close eye on Jayden and see what happens. But overall since we started
the new drug Clobazam and now lowering his Depakote we have seen very good improvements. Jayden is more steady on his feet
and wanting to walk more on his own again. He seems to be responding to sound a little more, he is more vocal trying to words
out. In school Jayden sounded out the letters of his name, and is very vocal trying to imitate the other kids sounds. His
head sensitivity seems to be getting better. Jayden has more energy latley. His sense of humor is getting even sillier. And
Jay is doing better communicating with us through sign language and gestures. We shall see what this week brings us. Thank
you again for your continued prayer & support. Love Andy, Jenny & Jayden
OCTOBER 17,2005
We went from one great
week to a not-so-great week.
Since we are weaning Jayden off the depatoke, it seems
that this week his body realizes
the decline in
depakote. He had many seizures and was kept home for
most of the week from school. A depakote pill was
added
back to level him out and we added a half a
clobazam at night. His Dr. feels that while his
depakote level is dropping,
this also effects his
lamictal level. So both medications may be going down
in his system. She needs to increase his
lamictal
before totally reducing the depakote. Yes, it's
frustrating. Although, this Sunday was the first
really
good day, so we'll see how slowly we need to
go. We also had blood drawn on Saturday, so that will
help the Dr. with
the next step.
Jayden's abr (auditory brainstem response) test is
finally scheduled for this Friday. There was a
huge
delay on their part because of the number of
medications he's on and the fact that they need to
sedate him.
Luckily, it's not anesthesia and they just
need to administer enough to have him sleep for about
an hour. This test
will tell us alot about Jayden's
hearing and where the break-down is. We have still
seen lots of signs of hearing and
he imitates lots of
sounds, so we're hopeful. HIs delay in speech may be
caused by muscle weakness in his mouth, according
to
his speech therapist, Nicole.
Even with the rough week, Jayden continues to smile,
laugh and inspire us everyday.
He has the greatest
spirit.
Love & blessings,
Andy, Jenny, & Jayden
OCTOBER 19,2005 Andy's Dad
Alot
of people compliment me on how good of a father I am, how strong I am through tough times, how I still can laugh and smile
at anything. Well I had the greatist teacher! My best friend, my hero, my dad has passed away last night. My heart aches right
now, but I am also full of joy, for I could have not asked for a better father. He taught me and showed me so many great things
in life. I am proud of the man I am, and that is because of him. If you knew my dad you knew a super person. One who always
had a smile, shared a joke, or a hug if you needed it. He will be missed dearly but he lives on everyday in me and my sister
Paula, and of course his strength, humor, and will to live are in Jayden. I ask that you please pray for my mom & sister right
now. Dad I love you -Andy
DAVID LEWIS SINGER
David Lewis Singer, 68, of Westerly, formerly of Passaic, N.J.,
husband of Roberta "Bobbye" Singer, died Wednesday evening, Oct. 19, 2005, at The Westerly Hospital.
He was born on
Nov. 9, 1936, in Brooklyn, N.Y., the son of Maurice and Rose Levy Singer.
After graduating from high school, Mr. Singer
served in the U.S. Navy for a period of 4 years. He met, fell in love with and soon married Bobbye Jablonsky in Brooklyn on
Sept. 1, 1963. They made their home in Passaic for the next 39 years until his retirement at which time they moved to Westerly.
During
his career, he worked as a typesetter for printing companies who published such magazines and papers as The City Sun, The
Star, Woman's Wear Daily, Soap Opera Digest and the Village Voice. He also worked at the Herald News in Passaic for several
years and then for American Color in Hackensack, N.J. for 10 years just prior to his retirement in 1995.
A great and
enthusiastic baseball fan and lifelong memorabilia collector, he rooted for the Boston Red Sox after moving to the Westerly
area. His wife, Roberta, still remained a faithful Yankees fan thus contributing to lively, fun-loving rivalries between them
during these past few baseball seasons.
He was an avid pet lover, enjoying as many as six cats and two dogs at one
time, which were a lively part of their home. After their move here, his ill health prevented him from having as many to care
for, but he loved the two cats which have made their home with him these past few years.
He will be remembered as being
a warm and outgoing man, always very upbeat and easy to talk with. He made friends wherever he went, even if it were only
to the mall where he may be seated on a bench to rest for a few minutes, his family would return to find him chatting with
a new acquaintance as if they had long been friends.
In addition to his wife of 42 years he is survived by a daughter,
Paula Singer of Westerly and a son and daughter-in-law, Andrew and Jen Velez Singer of Bloomfield, N.J. and their son, Jayden
Singer.
A funeral service will be held on Sunday, Oct. 23 at 2 p.m. at Mystic Funeral Home, Route 1, Mystic. Visitation
will be from 1 to 2 p.m. prior to the service. Relatives and friends are invited to attend. Burial will be private.
In
lieu of flowers, his family requests contributions in his memory be made to Meningitis Angels, P.O. Box 448, Porter, TX 77365.
NOVEMBER
6,2005
Howdy yall,
First off I wish to thank all of you for your support during this difficult time with the passing
of my dad. Things just have been really tough these past few weeks. Jaydens seizures are getting better and worse at the same
time, they are changing again. The increase in meds are changing his attitude and making him fiesty and rough. One minute
he is weak & wobbly then full of boundless energy, running and jumping, which is hard because we cannot let go of him because
of the seizures at any moment. Its just been stressful and wearing us out latley with all sorts of little problems in between.
But just when everything seems to crashing down Jayden will do something new to surprise us, to make us proud, to let us know
this will pass. He senses our stress latley and in between the fits and hits, just at the righ times he gives us plenty of
hugs & kisses. And Jenny & I know with Jay's little sister coming in March he will be the best big brother. They will learn
together, and help each other, and help us. There sure is alot going on but hey thats just life. And we as a family will continue
forward against anything (just hopes it slows down soon) together, because thats what you do! Live life everyday. It may not
be easy, but it is precious and beautiful. And in memory of my dad I still make sure to laugh everyday, because there is humor
in everything. We still have very little info on where Jayden's hearing is at, different doctors with different ideas and
theories, so we continue on searching for answers. But we still notice Jayden responding to sounds and even when we say something
sometimes he does it? We are so confused. Jay is getting more frustrated when trying to speak, he mumbles something to us
then looks for our response and mumbles again with attitude, like why don't we understand. Everything is just so up and down
and in and out latley. Every minute things change so much. But most importantly still moving forward little step by little
step on our journey together.
Love ya all, Andy, Jenny & Jayden
NOVEMBER 20,2005
Just a quick update on what's
going on. Jayden
continues to progress. The seizures are better overall
but he still has a couple a day. We are grateful
for
the improvements and hope someday they will be gone
forever. In the meantime, we keep researching
different therapies
and continue to move forward as
best as we can. We will be getting a second opinion
with a different epileptologist,
the second week of
December. Jayden has an appointment with both his
epileptologist and the hearing specialist at Beth
Israel
this week. Jayden has stumped them all with the
hearing issues. Of course, they have no explanation
for the absent ABR
hearing test. We're back to square
one, but Andy and I are looking into other things on
our own.
It has been
difficult to do that much being that I'm
almost 23 weeks and feeling the extra weight and
mobility can get a bit difficult.
I think Jayden
realizes the change in my body and knows that a baby
is on the way. He seems happy about it. He always
wanted
a sister.
We're hoping this Thanksgiving is wonderful as this is
the first without my dad. This was his holiday
and was
always my favorite. He would cook everything and it
was always great. This year, it's my mom's turn to
shine
in the kitchen and I have no doubt she we
succeed. I will also pitch in with some dishes and so
will my sister-in-law.
She's the dessert queen.
Anyway, I hope everyone has a great holiday. Cherish
these special occassions with those
you love because
life is too short not to.
We're certainly grateful for every day we have been
given with Jayden
and we're grateful for our daughter
on the way, for our mothers, brothers, and sisters and
of course all the wonderful
family and friends we have
who care and pray for us everyday. Thank you!
Love & blessings,
Andy, Jenny & Jayden
NOVEMBER
27,2005
Hello everybody,
Hope you all had an enjoyable Thanksgiving, and did not over eat! We had a very nice time
with family. Jenny, her mom & sister in law Debbie did a great job with the food. Jayden spent the entire time running and
playing with his cousin Joseph, it was great therapy for Jay and exhausting for me, but worth every second to just see Jayden
playing like a regular kid. The only difference is me running next to him holding onto to him in case he falls or has a seizure.
We spent 2 days in NY with different Doctors at the beginning of the week. Jayden's hearing aides were adjusted to a lower
setting, and we will try them again. They are really baffled about what is going on with Jay's hearing. They believe like
Jenny & I do it is in and out, more out than in but why is a mystery? We will continue more testing and therapy. We met with
Jay's epileptoligist and she is happy with his progress, and just seeing how well he is doing, she is also confused with some
things with Jayden. She is also unsure if all the meds Jayden is on for seizures are interfering with his hearing & speech.
We will see another new Doctor in 2 weeks for some new insight. Jayden had some big breakthroughs this week, on Thanksgiving
day we were sitting on the living room floor drawing on a chalkboard, and I drew a circle, Jay grabbed the chalk from my hand
and dotted 2 eyes and drew a smiley mouth, all perfectly. I have tried several times since and he just draws all over. We
know he has moments that are better than others. Tonight while laying in his bed we always look around his room with a flashlight
in the dark. Tonight I tried something new and I think I discovered something new. I shined the light on Elmo, then on my
mouth and said "elmo" I repeated this several times. I noticed Jayden who does not focus very well, followed the light from
Elmo to my mouth and paid close attention. I then pointed to Elmo, then to Jayden's mouth and he said "Elmo". I then repeated
this with a picture of Spongebob. When I put the light to Jay's mouth he tried and it was kinda close to Spongebob. I continued
this with counting and he got the number "one" perfect, the "two was more like "eew", three was "theeee" and he lost interest.
I think it proved a theory Jenny & I have had, that Jayden can hear when he really focuses on something. He just doesn't focus
enough. Jay's seizures have gotten a little better too. He rarely has any small ones, at least one big one every morning,
and then about on average 2 to 5 more throughout the day ranging from medium to big. I think we are getting better control
slowly. Well that's all for tonight. Thank you all for your continued prayer & support. Your words, emails, and everything
you do continue to help us all the time! Thanx. Love Andy, Jenny & Jayden
There are some new pics added.
DECEMBER
4,2005
Quick update on Jayden. He still continues to amaze us
with the things he does and tries to do. He actually
had
one almost completely seizure-free and had a
medium seizure on the way to bed. But, the next day he
made up for it and
had like 10. Always good days and
bad.
Jayden had his 6 month check up at Children's with Dr.
Y. He says overall
Jayden is coming along really well.
From his personality to the things he does, he's
healing quite well considering
all he has been
through. Of course the worst problems are the seizures
and hearing processing. He'll see Dr. Y again
in a
year.
It's so hard to see him go through the things he does,
but he continues to progress and that is what
matters.
I never realized how long of a process this can take
and although I get really down some days, I know he's
still
very young and time is a great healer. Patience
was never my strong point, but I'm learning a lot
about it now.
This
Saturday, the 10th is Jayden's birthday. We can't
believe he'll be 5. Not sure what the theme will be,
but it'll definitely
be as wonderful as we can make
it.
PS
Want to wish my friend Sarah congratulations on her
wedding today. She
flew to the islands and married her
love, Mario. All the best to them!
Love & blessings,
Andy, Jenny and Jayden
DECEMBER
10,2005
HAPPY 5TH BIRTHDAY JAYDEN!!!!!!!!!!!!!!
Check out Photo pages 4 & 5 for B Day pics
DECEMBER 24,2005
HAPPY
HOLIDAYS TO ALL!
Love ya
(check out photo page 5 for holiday pic)
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