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Jayden's Journal to Recovery
Written by Jayden's Mom and Dad
EXTRA !!!!!!!
For
Immediate Release
Please contact: John Caggiano, 973-954-9267 or Katherine
Wandersee, 973-954-9283
Jazz for Jayden Benefit will Touch a Chord at
Montclair Summer Arts Concert Series June 8, 2004, Montclair, NJ - The Jazz for
Jayden Benefit will � touch achord� at the Montclair Summer Arts Concert Series
on July 22, 7pm, at the Montclair High School Amphitheater. Montclair Jazz
artist Dave Morrish will be joined by a group of extraordinarily talented jazz
musicians as he hosts this special event to benefit the Jayden Singer Recovery
Fund. The event promises to be one filled with memorable music and the spirit
of true generosity.
Jayden, April 30, 2004
Hey everybody! first off Jenny, Jayden & I wish to
thank everyone for the overwhelming support we have received from all our
family & friends (you are all our family) . We especially thank you for all
your thoughts and prayers. It is the reason Jayden is still here with us and
Jen & I have remained so strong and not lost faith. We have a long road ahead
of us but our little miracle Jayden has overcome the biggest obstacle and now
we are on the long road to recovery, but we are so thankful to be on that
road! And with your continued support and prayer and our faith we will travel
smoothly down that road however long it may be.
Thank You, Thank You, Thank You! WE CANNOT THANK
YOU ALL ENOUGH. Thank you for all the support and prayer. Thank you for all
the beautiful cards, flowers, balloons & all the stuffed animals which take up
half of Jayden's room. Thank you for all your kind words, emails, and
messages. Thank you for all the food you brought for us. You kept us eating
when we did not want to. Thank you for the amazing amount of blood you donated
in Jayden's name. It will help so many people! Thank you for your hugs. Thank
you for all the things you did for us when all we asked for was prayer. You
did that and so much more! Thank you to all the Doctors & Nurses (Jayden's new
girlfriends) and staff at St. Joe's Pediatric Intensive Care Unit. You along
with the BIG doctor upstairs saved his life. Thank you to John Ricca and all
his staff at St. Joes for everything. Thank you to the entire Sheriff's Dept.
It really is a BROTHERHOOD! I love all my brothers & sisters at the PCSD.
Thank you to the Sheriff who called me from California as soon as heard about
our situation and told me not even to think about work and to focus on my
family and with all that was going on, it has made a difficult time a little
easier. Also for giving me the time to be with my family to get through this
long road. I am truly grateful! Thank you to all the friends who came out in
great support. It was nice to see friends we hadn't seen in a while, and make
many new friends along the way! Thank you to everyone at Jen's job for your
support and all your medical insight. It really helped allot! Thank you to all
the people out there we don't even know who you told our stories to and they
prayed for us (please pass this along to them). Thank you to everyone who was
right there whenever we needed anything! Thanks to the Union Con teachers,
families, staff members and all of Jayden's wonderful classmates. Thank you to
so many people. Most of all thanks to our families for whom without we would
not have made it! Everybody gives Jen & I credit for being so strong and
positive but that is how we were both raised by the greatest parents in the
world and we hope to be at least half as good as them! Thank you to my sis
Paula for all your support. Thanks to John Jr. for coming back! THANK YOU
THANK YOU! Special thanks to Jen's brother, Joe who kept us company day and
night and made us laugh when we needed it. Thanks to Debbie, Jenna, Kayla, and
Jojo for the love, pictures, and hugs. We will continue to thank you and will
forever be grateful to you all!
It has been 3 weeks now and Jayden has come a long
way from the spinal meningitis to kidney & liver failure which have completely
recovered, right side paralysis which he is moving almost completely, seizures
which are controlled by meds now, 2 strokes and swelling on the brain which we
are now beginning to recover from and begin therapy. Jayden was on about 12
IV's, breathing pump, heart and breathing monitor and now he is just on
seizure meds and a feeding tube, which will be weaned off with time. Jayden is
awake with both eyes open and moving more and more each day. He is moving all
his muscles around, and appears to try and speak. He has hearing loss but
further tests will be done. With this disease it will take us along time and
allot of therapy and relearning everything but we can and will make it 100%.
Right now, Jayden's brain is sending out signals that are getting crossed and
not working correctly so we must retrain them. We are in a great place and
today Jayden was evaluated and given his own wheelchair. Tomorrow we begin
therapy to learn everything all over again and we will do it together Jen Jay
& I. Our love and support for each other will get us through this even faster,
and of course your prayers!
Those of you who know Jayden know how smart and
witty and strong he is, so we know he will get through this! We all will!
Please realize through this just how valuable life
is, and what is important! Children are incredible!
We will try to keep you updated every day or so and
please pass this on to those who are asking about us so they can continue to
pray! Love Andy, Jenny and Jayden the miracle!
Jayden,
May 1, 2004
HEY EVERYBODY!
Its Saturday evening and Jayden is just settling
down to bed now. Today we had some stimulation therapy, to keep our mouth
muscles working properly because we will be learning to eat soon. Our
stimulation therapy also stimulated our hand, arm, feet & leg muscles. We
went outside and enjoyed some fresh air in our new wheelchair, which I will
be painting flames on very soon! Then we had some physical therapy in the
gym where Jayden is getting better control of his neck muscles, and with a
little help from the therapist he rolled over using his neck and upper body.
We are taking little baby steps forward everyday, and these little steps
will get us very, very far over time. We have a long way to go but we are
very thankful that Jayden is here to take these steps! Jay's eyes were open
almost all day today and he seems to be looking at objects, and me & Jen
when we talk or sing to him. I had one of the nurses come in this morning
who has been her 20 years and ask when he first got sick? I told her 3 1/2
weeks ago she chuckled and stated that he hasn't even begun his recovery
yet, she explained that Jay is just starting to wake up and the swelling is
just beginning to come down. She said she has seen so many miraculous
recoveries of children that were supposed to
never see, hear, walk or even function again. She stated Jayden is on the road
to a good recovery but we must be patient, and not expect to see things
overnight. This type of healing will take time. And we are here right by his
side every step of the way. And we will all be better, stronger and closer
together when we recover.
Once again we must thank you for all your support and
prayers, everything each of you have done for us in so many different ways.
THANK YOU!
Good night and God bless! Tomorrow we start another
beautiful day with our miracle!
-Love Andy, Jenny &
Jayden
Jayden,
May 2, 2004
Good evening all,
Its Sunday night and Jayden is sleeping sound.
Today was restful day, Jen & I got to go home for a couple of hours each to
take of things around the house. We had some family & friends stop by today.
Since there was no therapy today we continued to do some of stretching &
stimulation we have learned for Jay. Tomorrow we have a busy day, and we
meet with "the team" of doctors, neurologists, & therapists who will go over
Jayden's evaluation and our goals. We hope to have some more insight
tomorrow. The hardest thing right now is not knowing what will happen next,
or when will it happen, or will it happen? The minutes seem like hours, the
hours seem like days, and the days begin to blend together. Sometimes it is
hard to just sit by and watch, but Jayden always told me and Jen whenever we
would rush something, he would say "you have to be patient" and for Jayden
we will. We will because we have faith in God. We will because we have faith
in Jayden. We will because we have faith in all the doctors, nurses,
therapist and staff who have gotten us this far, and will continue to help
Jayden everyday. We will because we have all of your prayer & support, and
look how far we have come! We will never loose the faith, we just have to
patient for Jayden's sake! This is the hardest time in our lives, but we
know the reward at the end will be almighty! Jayden is coming back to us
everyday. And that makes everyday so much greater!
Thank you again for helping to save Jayden!
Thank you again for helping Jen & I through this!
Thank you again for your continued prayer &
support!
Love Andy, Jenny & Jayden
Laughter really is the best medicine (thanks for
teaching me that dad)!
Please pass this along to all those who have
supported and pray with us!
I have decided to do the update today.
We had our first Patient Care Meeting. We were
warned that it may be overwhelming and it certainly was. They think we will
need to be here about 6-8 weeks more and after that outpatient therapy. From
what they can observe, they're thinking at least a year of outpatient
therapy is required.
He no longer has swelling on the brain. They refer
to him as coma-like in the sense that the waking up process is that of a
coma patient. Their biggest concern is his hearing. We don't know where
we're he's at concerning that. In my heart, I believe he can hear us and I'm
holding on to that. They say he has sustained some serious brain injury, but
again, they can't tell us anything. When it comes to the brain, there is no
black and white, just gray areas. They can't say because they don't know.
I was very upset after the meeting. We both felt
that we aren't getting any answers. It's extremely frustrating. But that's
how it is with brain trauma.
He responded well to all his therapies today, so
they're pleased with that. Basically, it's a long waiting process, with lots
of ups and downs. We will remain focused and positive and continue to give
him 110% of ourselves and our love.
It's very hard to smile these days, but the e-mails
and good thoughts we have received always help.
Until the next e-mail. God bless.
Love, Jenny, Andy, and Jayden
Jayden,
May 4, 2004
Hello to all,
It's Tuesday night and we just finished a very
good day. Jay did very good with his swallowing therapy. He was able to
swallow every time he was stimulated. This will lead him down the road to
being able to swallow food. We had him twice today in a brace that holds
him in a upright standing position. This is good for his blood circulation
as well just good for his body to be in this natural position. He is
moving his mouth more and appears to be trying to speak, and we are
hearing more and more different tones from him. He is just absolutely
beautiful to look at, so we spend allot of time just doing that, as well
as speaking to him and talking about all of his regular activities. And of
course we are just being silly around him, just as we have always done!
We have begun to stop asking why, or how, and
have realized this is not a great tragedy because we are so blessed to
still have our son here with us. We are finding the strength from Jayden,
from each other, from all of you, and most of all from above! And this to
shall pass. We don't know why this happened, nor can we ask why. But we
can see how much good has come during this time. How many beautiful people
have touched our lives! And how many lives Jayden has touched!
Please continue to pray for our miracle. We
still have a long road to travel but we are getting there. And more
important we WILL get there! Just so you know Jenny & I pray for all of
you every night too!
THANK YOU, THANK YOU, THANK YOU!
Good night & God bless. Love Andy, Jenny & Jayden
Jayden,
May 5, 2004
Today is exactly 4 weeks since Jayden first went
in the hospital. It's incredible how fast time has gone and how far Jayden
has come since that dreadful day. The Saturday before we came to
Children's Specialized Hospital, Dr. Messina told us how he didn't even
think Jayden would still be here with us. We're so thankful that he is and
we are happy with each step forward he is taking.
Today was a good day. Jayden responded for the
first time to light shining directly into his eyes. He blinked and didn't
want to open his eyes. He also did well with swallowing again. We also had
him in the supported standing table and he tolerated it for an hour. He
actually would have stayed in that position longer, but we didn't want to
push it.
We also had an incredible visit from Kate Wynn,
whose daughter, Carye (EBA, Earth Bound Angel) came by to show her love
and support for us. She understands what we're going through because just
4 years ago today her beautiful daughter survived spinal meningitis. What
an incredible woman she is and what an angel she has. She is an angel
herself for coming to us and making us feel so positive and so understood.
Carye's story can be read through
http://www.meningitis-angels.org/caryeeb.htm.
A special thanks to Frankie Milley who has been
incredible and has introduced us to this remarkable woman. We will have
that picnic with Carye, like we discussed today, Kate.
I want to send a special thank you to my parents.
They have been by our sides everyday in PICU and almost everyday at this
hospital. Andy and I are so incredibly blessed to have them here. When
they come, we are able to get outside and take a walk on the hospital
grounds. It's just what we need to clear our heads and just take in
nature. Plus, we are able to have dinner and know Jayden is in great
hands. I have been fortunate enough to be blessed with the greatest
example of what great parents should be like. I hope I am half as good as
they have been and continue to be. I love you mom and dad.
Hope all is well with all of you. God bless.
Love,
Andy, Jenny, and Jayden
PS
Jayden,
May 6, 2004
Hello all,
Its Thursday evening and today was another good day
for Jayden, Jen & I. We had all sorts of stimulation today. Jayden is doing
really well with his swallowing again today. He did good responding to light,
but even better this morning I put the TV on and Dora the explorer was on Nick
(one of Jays favorite shows) his eyes went right to the TV and did not come
off. He was very still and relaxed watching the show, as soon as it was over
we had to turn off the TV because he has to have quiet time before his
stimulations. As soon as the TV went off he became very upset and began
looking all around the room. He did very well in physical therapy where before
he would be upset for the whole half hour, he is a little upset with each new
therapy but then calms downs and responds well, He is becoming much more
comfortable in his wheelchair each time we use it. We are also hearing a wider
range of sounds coming out of his mouth, which he moving more and more like he
is trying to talk. We constantly talk, sing, and of course joke around with
him. All his body movements seem to be a little more controlled and lest wild.
And today during his hearing stimulation it appeared he may have had a delayed
reaction. Jen and I still believe he can hear us, and it appears the temporary
blindness is beginning to fade. We are seeing these baby steps everyday and
they are so huge to us, we find ourselves teary eyed with each one. We are so
proud of our little miracle, he is doing a wonderful job!
This is a wonderful place and they doing so much
for Jayden. We see the other children here and hear their stories and they are
amazing. The children here are beautiful and only know how to move forward to
get better, stronger and healthier. They are a true inspiration. These kids
have so much against them, but every day they continue to battle and get
better all with a smile and a laugh. They don't worry about the little things,
they only focus on what they have to do! I truly admire them. And the parents
here we have met are great. They have talked with us and helped us learn how
to cope with this. We have made some great friends here. Thanks again to Kate
Wynn who graced us yesterday with her visit full of support and hope. We also
have a great friend in the next room to ours Kerry who has twin boys Elijah &
Milo who have been here a year. Kerry sure has her hands full two times but
has spent so much time helping us out, its a very small world Jenny & I grew
up with Kerry in Passaic. I haven't seen her in about 15 years and the other
night she walks into the room and says hi. The people here are wonderful and
we ask that please include all of them in your prayers for us.
One again thank you for your continued prayer and
support! We love you all!
Good night and God bless! Love Andy, Jenny & Jayden
Jayden,
May 7, 2004
I'll keep this one short and sweet. Today wasn't as
productive of a day with his therapies. Timing was not on our side, but we
did see some accomplishments. Jayden was trying to speak more. He definitely
made more vocal sounds and moved his lips a lot. He's also responding pretty
well to Andy and I. He's focused when we speak and stares at us very
intently.
He looks as adorable as he always does and when
he's too tired or sleepy during his therapies, we do what we can to continue
some of the things they do with him.
We know he is getting better everyday and with our
love and patience, he'll recover quite well. God knows, we pray for that
everyday.
A special thanks to the Wayne division for their
donations to us and to Jean P., from my job who donated money towards our
food expenses at the cafeteria.
Again, thanks for the prayers and good thoughts.
Love & Blessings to you all,
Andy, Jenny, and Jayden
Jayden,
May 8, 2004
Hello everybody,
Good evening, its Saturday night and Jayden is all
tucked in and ready for bed. Just finished reading his favorite bedtime
stories, and talking about all his favorite things to do, and playing with all
his friends. Things he will be doing soon! We had another good day of therapy
with Jayden responding well to his stimulations. He definitely seems more
aware of his surroundings, and is still waking up and progressing each day.
And that is all we can ask for just little baby steps each day.
We had a very very special visitor today. We were
blessed to meet Carye Wynn
http://www.meningitis-angels.org/caryeeb.htm she
is a survivor of meningitis (earth bound angel) and she came to see us today
with her beautiful mom Kate. As soon as Carye stood next to Jayden he was so
relaxed and just stared at her, and tried to speak with her. I'm sure when he
can speak they will have allot of interesting stories to tell each other. It
truly was a beautiful sight to see two angels face to face. Our time spent
with today with Kate & Carye was priceless. We wave to thank Frankie Milley
http://www.meningitis-angels.org/ for
her amazing strength, she has lost her son Ryan to this terrible disease and
continues to help others like us in our time of need. You brought us together
with Kate & Carye. We know her angel Ryan
http://www.meningitis-angels.org/ryanhb.htm has
watched over and protected Jayden and helped pull him through this battle. You
are an amazing woman and we cannot wait till the day comes when we can meet.
I must continue to Thank everyone over & over for
all the continued prayer & support we receive. It seems everyday we get new
emails from old as well as new friends. And your words and prayers are so
helpful to us. It is amazing how many lives Jayden has touched. And it is even
more amazing how many beautiful people have touched our lives! We thank you
again & again, and please continue to thank those people we don't even know
who you have told our story to and support & pray for us. Please pass on these
messages and they can keep up with the updates at
http://www.meningitis-angels.org/Jayden.htm .
We don't know why the big man upstairs does what he does, but we hope our
story inspires you in some way. Life is so very, very important do not take
one moment for granted. Don't sweat the little stuff, realize what is
important. Enjoy life. Love your family and cherish every moment with your
children. Make new friends everyday because they can & will help you out when
you most need them, and rekindle with friends lost. And please remember to
laugh as much as you can, life really is fun!
I would like to share a poem sent today by a
friend, I believe it was written by Gen. Douglas McArthur. Thanks Joe Diorio.
Build me a son, O lord who will be strong enough to
know when he is
weak,
And brave enough to face himself when he is afraid.
One who will be proud and unbending in honest defeat, but humble and
gentle in victory.
Build me a son, whose wishes will not replace his actions, a son who
will know thee, and that to know himself is the foundation stone of
knowledge.
Send him, I pray, not in the path of ease and comfort, but the stress
and spur of difficulties and challenge.
Here let him learn to stand up in the storm.
Here let him learn compassion for those who fail.
Build me a son whose heart will be clear, whose goal will be high.
A son who will master himself before he seeks to master others, one who
will reach into the future, yet never forget the past.
And after all these things are his, I pray, enough sense of humor that
he may always be serious, yet never take himself too seriously.
Give him humility, so that he may always remember the simplicity of
true
greatness, the open mind of true wisdom, the meekness of true strength,
Then I, his father. Will dare to whisper,
'I Have not lived in vain'
Good night & God Bless. Love Andy, Jenny & Jayden
Jayden,
May 9, 2004
Happy Mother's Day to all the moms out there!
Today was the best mother's day. The best present I
have is my son. I don't need anything else but that. He looked great and I
decided to do some of the therapies on him and he did great. His responses are
a lot better to stimulation and he's definitely a lot more comfortable.
My family was here and brought some nice gifts. We
also had a visit from 2 co-workers and friends, Glenn and Jean. Jean set-up
the most awesome basket of shrimp cocktail, fruit, cheese, chocolate,
champagne, (beer for Andy), and crackers. It was the perfect addition to our
day. So, I thank you from the bottom of my heart for your thoughtfulness. I
don't think I have smiled this much since Jayden started getting sick.
It was really a wonderful day with family, friends,
and most of all my son, who brightens every day for me.
God bless and much love,
Jenny (Andy and Jayden, too)
Jayden,
May 10, 2004
Good evening all,
We had a very busy & productive day. Jayden once
again is amazing! Today during physical & occupational therapies while being
held in a sitting position he had great head control. He again today showed
signs of response to light stimulation in his eyes. Today during stimulation
therapy for his hearing as a bell was rung by each ear he increased his vocal
tones, which the therapist said was a good sign. But even more important this
afternoon while Jayden was taking a good nap another mother in the room
dropped a whole bunch of stuff crashing to the ground, and Jayden definitely
was woken up by this noise. Jenny went over and hugged the woman for making
such noise. We took very good baby steps today.
Once again we would to thank you all for your
continued support & prayer! But tonight I also want to thank someone very
important and that is Jayden. He is doing an incredible job everyday, with
everything he has been through he continues to do a great job! He is learning
and doing a little more each day. He is the strongest & most determined person
I have ever met. He fights an amazing battle forward each day. Only he knows
what he is going through right now, and we know his determination, strength,
faith, love will bring him right back to us. He has too many things to do yet,
he loves to play, and meet new people, and laugh, and make people laugh! He is
very caring, loving and affectionate. We are so proud of him everyday! We are
just here to support him, but he is doing all the work, the greatest job! And
tomorrow he will continue to take more baby steps on his incredible journey,
and the next day, and the next day........................
Good night & God bless! Love Andy Jenny & Jayden
We are the proudest parents!
Jayden,
May 11, 2004
Just a quick update on Jayden. He did very well with
all his therapies. His speech therapist who works on his swallowing is
impressed with how well he is doing. Certain techniques that she uses will not
be able to be used for much longer because his sensations are strengthening.
God-willing, the next step is pureed food. Can't wait. He was also on a swing,
which he laid down on and the therapist would just swing him side-to-side and
around. He loved it. He also showed more signs of stronger head control.
We're so proud of his progress.
Blessings to all and much love,
Andy, Jenny, and Jayden
Jayden,
May 12, 2004
It's been another good day with more signs of
improvement. Speech therapy says perhaps Jayden can
try pureed foods next week. The doctor says that he
looks good and he seems to show more response to
hearing. They will need to do more extensive hearing
tests. Yesterday, they did an EEG, so we should have
the results of that next week. Other than that, Jayden
is amazing.
We had a slight scare at the hospital with a power
outage for about 3 hours. The generators went off
after an hour and a half. Although Jayden was fine,
there are so many kids dependent on respirators. They
were running around with batteries to hook up the
respirators. To top it off, they couldn't into the
meds closet, which is electronic. But, thankfully, 5
minutes before med-time, the power went on. Scary.
Anyway, all the best to you all. Love,
Andy, Jenny, and Jayden
Jayden,
May 13, 2004
Hello everyone,
First off we are all doing great! we made it through
the blackout just fine. We have no internet service at the hospital and they
don't know when it will be back. Jen and I have decided to start alternating
going home each night to get some sleep. We haven't slept in 5 weeks now and
we are feeling the effects. So each night we will alternate going home for
some sleep, we must keep up our strength for Jayden! I am home tonight, and as
empty as the house is, I sit in Jayden's room and laugh & smile because I know
he will be home. It will be some time, but he will be home and that's all that
matters! Jayden had another great day today with good swallowing therapy. He
did good in all his therapy and he was laying on his stomach and was able to
hold up his head for a short time. 3 weeks ago he had no head control at all,
now while being held in a upright sitting position he has good head control.
The therapists say this is the start to all control and balance. We were told
today Jayden might be able to start standing with assisted support in about 2
to 3 months. Jen & I almost cried with joy when we heard that. We know we just
have to take baby steps and can't rush anything, there are no definite
timelines. Day by day we will take it, we are just so thankful to have
everyday to take with Jayden! We also had our first swim class today, Jay got
to float around in the pool, and he was relaxed and very comfortable. That
will become part of our regular therapy now, a very good therapy! I have to
get some sleep now, so until tomorrow good night and God bless!
Love Andy, Jenny & Jayden
Thank you all for your continued support & prayer! We
would not be here, & where we are going without YOU!
Jayden,
May 14, 2004
Jayden has his 2 week evaluation today and although
we didn't get the results, the therapist, Jessica, says he has made some great
strides and improvements in all areas. Some areas more than others. He also
seemed to turn his head when she rang the bell by his ears. He's hard to read
sometimes because of some of the moments,
but it sure seemed like he heard that bell. He has calmed down allot with the
agitation and handles
stimulation better and better. Biggest thing today, he smiled at my mom and
dad twice. We haven't seen him really smile yet, but he did. What better way
to greet my mom and dad than with a beautiful smile. Andy and I are so proud
of him and we know in our hearts he will be well. We just need to have lots of
patience and faith in God and in him.
We love you all and thank you for your generosity, e-mails, prayers, and love.
Love & blessings to all,
Jenny, Andy, and Jayden
Jayden,
May 15, 2004
Hello all,
Sorry its gonna be short & sweet tonight. But all
that needs to be said is Jayden smiled again today for Jenny & me. It is the
most beautiful smile you could ever see. Today was great day! Thank you for
our visit from our EBA Angel Carye, you & your mom always uplift us!
Good night and God Bless! Andy, Jenny & Jayden
Jayden,
May 16, 2004
Today was a much calmer day. No therapies. Just
family
visiting, which is always great. Andy's parent's came
down from RI for the day. They were pleased to see how
well he's doing. He has received his schedule for the week and it's all
booked up from 8:00am-3:30pm.The internet service is still down, so we'll
check our
e-mails from home at night.
Love & blessings,
Jenny, Andy, and Jayden
Jayden,
May 17, 2004
Good evening all,
Its Monday night, we had another good start to the
week! Today Jayden did very good with his swallowing, we did not get to try
pureed food because Jay has a cough they are trying to get under control. The
cough is due to allergies, cold or just the feeding tube tickling his throat,
we will try this week sometime. Today in recreational therapy while working on
his head control I noticed that Laura his therapist wasn't holding his upper
body so tightly. She told us that along with his improved head control, he is
gaining upper body & waist control too. He did well in all of therapies &
stimulations again today. we saw one of the doctors today who was in Jayden's
progress meeting today, and she stated everyone was very impressed with his
progress! It was another great day! But of course everyday Jenny, Jay & I have
together is a great day! And of course thanks to all of you, our Family &
friends. We are truly blessed for everyday with Jay, and we are truly blessed
to have so many beautiful people supporting us! Well tomorrow after our full
day of therapies we have the Children's Specialized Hospital Spring Fling
party. Jen, Jay & I will be getting dressed up and going to dinner & dancing
at the hospital, its a good place that does GREAT things! Our progress is
coming along and we have reason to party! Again thank you all for your
continued prayer & support. We truly love you all! And we know you all pray
for us, but you should know that YOU all are in our prayers every night! THANK
YOU! Good night & God bless! Love Andy, Jenny & Jay
Jayden,
May 18, 2004
We had applesauce!!!!!!
Jayden was able to swallow small bits of applesauce.
He took it very well. I'd imagine more trys this week.
We're hoping they can remove that feeding tube. It was taken out for about an
hour and half and he barely
coughed like he usually does. I think he's having a real hard time with that
tube down his throat. Anyway,
as soon as he's able to eat by mouth and can keep his calories up, the tube
comes out. Can't wait!!! The
coughing issue is really becoming a problem with sleeping and with his
feedings. We're praying for this
also to pass.
He was very good with stimulation and really focusing on whomever was talking
to him. Much better eye
contact.
We're so proud of every achievement. His evaluation score went from 2 the
first day to 13 14 days later.
He's truly amazing. We went to the Spring Fling and I think he had a good
time. He was very calm with the loud music playing. It was great to see all
the kids so happy and yet, it was
so overwhelming to see so many kids in wheelchairs with various problems.
I've attached a picture of Jayden dressed up to go to the party. The tube on
his face is his feeding tube.
He's so handsome!
Anyway, Andy, Jayden, and I always send our love and
blessings to you all. Please keep praying. God is
listening!
Love,
Andy, Jenny and Jayden
Jayden,
May 19, 2004
Hello all,
Sorry gonna short & sweet. I just got home its 1am
and I gotta get some sleep. Jay had a good day. He did very well with his
swallowing stimulation, ate a little pur�ed pears. Did very well holding up
his head, and gaining a little more upper body control. He is focusing on
things much more now. We are just trying to work out a problem we are having
with Jay throwing up. He can feel his feeding tube at the back of his throat,
and he is still working on swallowing his saliva, along with them working out
the proper feeding. Jay has had some problems with vomiting, but this is just
a minor bump in the road to recovery. After all he has been through and
survived he will overcome this small hurdle soon. He is an amazing young man,
and is improving and fighting to get better everyday. We are right by his side
every step of the way. I am so proud of Jay, and also his beautiful mom Jenny,
she is doing an incredible job. And with this team of Jayden, Jenny & myself,
there is no stopping us. We are going to win!!!!!!!
Good night & God Bless! We love you & thank you for
your continued prayer & support! Love Andy, Jenny & Jayden
Jayden,
May 20, 2004
Here's another quick report today. Jayden is fine.
Still working out these feeding issues. It slowed him down today with his
therapies a bit. They're trying
different things to resolve this. Once, it is, we can continue to move
forward.
Jayden did really well with physical therapy today. He can roll with little
assistance and his head control
is getting better and better.
A special thanks to the Union Cong. families who have sent us a very generous
donation. Thank you for your prayers and support.
I, too, want to commend Andy for the incredible husband and father he is. I
thank God everyday for him
and his strength. He keeps me going, along with
Jayden.
That's all for tonight.
All the best and God bless,
Andy, Jenny, and Jayden
Jayden,
May 21, 2004
Hello All,
First off I must apologize for not sending out
updates the past 2 nights. We still have no internet service at the Hospital,
and Jenny & I are both physically, mentally & emotionally drained right now.
It has been a rough couple of days added to six weeks so far. It is now
beginning to catch up with us, Jayden is doing fine he is progressing with his
therapies. Today was a restful day and we seem to have the problem of vomiting
somewhat under control, the meds are helping but we have still not found the
solution. He had good days of therapy Friday & Saturday with increased head
and upper body control, we are still moving forward with a small bump in the
road right now. We know we have a very long road ahead and there will be
bumps, but they just really hurt Jenny & I allot because Jayden can't tell us
how he feels, and we can't make it all better right now. I said we were
physically, mentally & emotionally drained but be assured we are not
spiritually drained. We know Jayden is a miracle and will overcome this with
time, and as much as we get beat down everyday the positives always out weigh
the negatives. He is moving forward and we are so proud of him. And we are
just so thankful for each day! We will look back on this time and say remember
when. We are getting there! Once again Jenny, Jayden & myself must thank you
all for your continued prayer & support! It keeps us afloat. We love you all
and pray for you too. Tomorrow starts another week and with that more intense
therapy and pushing a little harder as Jayden's brain continues to heal. He
really is doing a great job, he is my hero! Well I gotta try and get some
sleep now, so good night & God Bless! -Love always Andy, Jenny & Jayden
Jayden,
May 28, 2004
HAVE & HAPPY & SAFE MEMORIAL DAY WEEKEND ALL!
We have a memorial day today. Jayden did outstanding
today. He was definitely more focused on objects and Jen & I, & the therapists
all noticed how much he was really focused on what he was doing today. He was
following objects with his eyes very very good today. Thanks to Linnea &
Anthony for the "perfect" toys you sent, his therapists used them all day
today and his response was awesome! He was holding onto a tennis ball and
moving it around. He was sitting up with assistance much better today. He had
a great swimming session, he really enjoys the pool therapy. They are trying a
new swallowing method which seems to be working great. Jay is discovering his
mouth muscles and is really moving his mouth and tongue around allot. Jenny &
I both felt today that Jayden is really starting to come through, it is a
great feeling! We talked to one of the nurses here who told us about her son
who went through almost the same scenario when he was 6. He had spinal
meningitis also, it was a different type but he went allot of what Jay is
going through. It took a year of therapy and another year of recovery. He is
now 28 living in South Beach and a top writer for advertising, this summer
when you hear all the new Burger King ads, they are his. She knows exactly
where we are and is very impressed with Jayden's progress. We know it will be
a long road, but in the end we will all be just fine. Jayden is amazing. All
of you are amazing for all the ways you have helped us! People really are
great! We have received letters & gifts from total strangers who have heard of
our story. God bless you all, and please thank those for whom you have told
our situation to. We know all of your support & prayer have helped save Jayden
and we know it will get us over this mountain ahead of us. THANK YOU!!!!!! As
I was typing Jay just woke up from a small nap a looked right at me, I went to
his side where he looked into my eyes and began to babble as he was trying to
talk to me. I am so overwhelmed right now, and so proud right now. I gotta go
now, I'm going to sit with Jay and watch Sponge Bob. Have a fun & safe weekend
all! Love Andy, Jenny & Jayden
Jayden,
May 29, 2004
Another great day! Jayden was very focused on Andy
and the charge nurse very early this morning. He turned his head back and
forth during their conversation. When the nurse asked him where daddy was,
Jayden pointed his finger towards his dad and turned and looked at Andy. She
asked him 2 more times and he did the same thing. It definitely wasn't a
coincidence.
Jayden also seemed to be laughing today. He had a
smile on his face as he giggled. He's waking up more and more each day. We're
so pleased with his progress.
Until tomorrow. All the best to you all. Love,
Andy, Jenny, and Jayden
Jayden,
May 31, 2004
Good evening all,
We had a wonderful Memorial Day. Andy and I continued
to do most of Jayden's therapies since the therapists were off today. I also
cuddled with him and rocked him to sleep in the rocking chair. When he woke up
he said "momma". He has been saying "mom" a little, but today he said "momma".
He has been much more vocal these days and is trying. Of course, we're not
expecting to have a full conversation any time soon, but he's trying and I
think he's understanding us much better. He looks great.
Thanks for the prayers. Keep them coming.
Love and blessings,
Andy, Jenny and Jayden
Jayden,
June 1, 2004
Hello all,
Its Tuesday night and we had another great day. Jay
is really showing signs of paying attention and grasping onto objects and
holding on. Tomorrow we have our "team" meeting with all of Jayden's doctors
and therapist to find out where we are at, what goals have been met, and
what new goals we have. One of Jay's therapist said today since she saw him
on Friday he is improving and he is amazing! We are thrilled. He said mama
again today, and he was very vocal when he was upset with things today. The
therapist said that is a great sign, that he moving towards the next step
which will be a rough one for Jenny & I. It is a phase of agitation, anger
and discomfort. But the therapist are very happy we are getting to the next
step. That's what we are taking here, step by step, day by day. Jayden is
doing a wonderful job and soon all these steps will be behind us. We are
moving up that mountain together and will reach the peak together. Jenny & I
and the people here defiantly feel that fact we are here all the time for
Jayden to see will help him a tremendous amount. And for that we are so
thankful to all of the people who help us and support us through this. My
special thanx to Sheriff Speziale and the whole Passaic County Sheriff's
Department for giving me the time and more importantly the peace of mind not
to have to worry about work right now. The super people from Jenny's job for
all the support and wonderful things you have done for us. We will never
forget what has been done for us. People really are great! Thank you so much
to Jen's parents for coming here so much and just giving Jen & I a chance
just to go for a walk outside, with the peace of mind that Jay is in great
hands. Thank you to everyone who has supported or prayed for us in any way
shape or form! We are so thankful!!!!!!! We are so blessed!!!!! Soon we will
be having a great big party and everyone is invited. Soon! So get ready!
Well that is all for tonight, good night & God Bless! Love Andy, Jenny &
Jayden
And a special thanx to all those who laugh with us
and make us laugh. Always remember laughter is the best medicine! And ALWAYS
keep the faith! We will win!!!!!!!
Jayden,
June 2, 2004
Today we had our patient care meeting. They are
happy with his progress. They say it's slow, but moving forward. Jayden has
met some of his goals and new ones have been set. His biggest
accomplishments are physical therapy and visual stimulation. He will be
doing more assisted standing as well as lightly supported sitting for about
5 minutes. They also want to work on commands with 50% achievement. They
can't expect him to follow simple commands 100% of the time. Swallowing is
also something that they need to continue to work on. They are hoping for
stronger and more spontaneous swallows.
They say we will be here at least another 4 to 6
weeks. They want to continue with the intense therapy because they are
pleased with how it's going.
They are still unsure of the hearing and will
schedule a hearing test soon. He will also be getting another CAT scan done
in the next 2 weeks.
God bless him. He's working so hard. We're so happy
and proud and we will continue to be by his side 110%.
All the best to you all. Please keep praying. Andy
and I appreciate all of you!
Love,
Andy, Jenny, and Jayden
Jayden,
June 3, 2004
Hey all!,
Jayden ate 3 small spoonfuls of applesauce today.
His swallowing still is a little slow but he is getting there. Did a great job
of sitting up with assistance again today. He sure lets us know when he is
upset with something now, the agitation phase is beginning. He looks great. He
really focuses on Jenny & I when we speak or sing to him. Although my
wonderful singing voice can hypnotize anyone! Its been 5 weeks here and Jayden
is showing great improvement. We still have a long way to go, but we are
going, and going strong! Good night and God Bless! Love Andy, Jenny & Jayden
Thank you for your continued prayer &
support!!!!!!!!!!!!!!!
Jayden,
June 4, 2004
Just a quick update on Jayden. He did very well
today. He ate some more applesauce. He sat for a couple of seconds unassisted.
He's definitely showing more signs of agitation which the therapists are
thrilled about. It'll be difficult to watch, but we know that it must happen
to move onto the next level of awareness and understanding. He is saying
"momma" more frequently and when I went to make him more comfortable in bed,
he said "hi mom". Made my whole night.
Thanks again for the support and love. You all are
the best!
Love,
Andy, Jenny, and Jayden
Jayden,
June 5, 2004
Good evening everybody,
We had a fantastic day today. Although every day is
with Jayden! He is doing great with the fact they have lowered his medication
to relax him, and he may be beginning the agitation phase. Jenny did a super
job of changing Jay's feeding tube by herself today. It is not an easy job but
she did great, I am very proud of her! Jayden ate 2 ounces of applesauce &
rice mix today! They gave him 1 ounce and he wanted more so they checked and
said he could have 1 more. He ate it right up. Jenny & I had a great surprise
today. I am an instructor with the Passaic County Sheriff's Dept Explorer
program, which is a junior Police academy for kids, let me rephrase that they
are young adults, a great bunch! The explorer's and some the other instructors
surprised us today by coming up here and taking Jenny & I out for lunch at
Famous Dave's BBQ (which I am still full from). It was so nice to see
everybody, and how much everybody cares. We really appreciated the lunch, the
laughs and the wonderful company. Thank you Kathy, Jimmy, Natalie, Nelson, Tom
& everybody for a great time. Thank you. I know Jenny & I say thank you allot
to so many people, but you really have no idea how much has been done for us.
From friends & family, to total strangers we have discovered that people are
truly wonderful! So many beautiful people have touched our lives, as we have
touched so many. Jayden also did very well sitting up with assistance today,
and a little standing with help today. Another great day climbing that
mountain ahead of us, but we are definnetly moving upward everyday. We can
look back now and see how many things we have already accomplished. Jayden is
doing a super job! Well that's all for tonight. Good night & God Bless! Thank
you again to everyone who has done so much for us! Thank you most of all for
your continued prayer & support! Love Andy, Jenny & Jayden
Jayden,
June 6, 2004
Today was very relaxing. Jayden looks great and
seemed to be smiling quite a bit today. We're hoping the speech therapist
will allow us to start some small feeds soon. We'll find out tomorrow.
All the best and looking forward to another great
week.
Love, Andy, Jenny, and Jayden
Jayden,
June 7, 2004
Having internet troubles at the hospital again, so
I'll keep this brief. Jayden did well. He ate some
more applesauce. They will schedule an x-ray of his swallowing to make sure
the food is going to his
stomach and not his lungs. If all is well, they will become more aggressive
with pureed food feedings.
Jayden is also very vocal and Andy and I thought we heard him say "I want
mom". He's coming along every
day. He started to imitate us making faces at him. He shows great control of
all his facial expressions. His
personality is definitely showing. That's it for now. Hope everyone is
blessed.
Love,
Andy, Jenny, and Jayden
Jayden,
June 8, 2004
Jayden ate some more today. Once he has his
swallowing test done, than they will proceed with pureed foods. They have
stopped his med to take the edge off, so we'll see how he handles that. As it
is, he's becoming very agitated. He's also much more expressive when he's
upset. He really cried today.
We need to remember that this is all good signs, no
matter how difficult it is to watch. Hopefully, he won't get too upset.
That's all for now. Keep praying! Love,
Andy, Jenny, and Jayden
Jayden,
June 9, 2004
Hello everybody!
Its Tuesday night (I think) and we are having a super
day with Super Jay! He is off the medication to keep him relaxed, and although
he is agitated he calms down quickly. He is waking up more and more each day
and today seems very alert and his focus on things is about 100%. He is
grabbing onto things with his left hand and holding them, and trying with his
right hand, which is moving allot more these past 2 days. His movements are so
much more purposeful. And he is really trying to speak to us. Today In
addition to eating almost 2 ounces of pureed pears with rice cereal Jayden
chewed and ate 2 cheerios. He knowingly chewed and then swallowed little
pieces of a cheerio at a time! He is doing so well with his sitting we will
start concentrating on supported standing soon. Everyone here is thrilled & in
love with Jayden, who couldn't be! A good friend that works with Jenny sent us
a Superman bear with Jayden's name on the cape, and it is perfect. Jay is
doing a super job, and he his certainly my hero, he has shown us amazing
qualities within himself. His strength, drive and determination that we see
everyday excite us and keep Jenny & I going. His comedian wise guy personality
is starting to show through already, and he has people laughing here all the
time ( I don't know where he gets it from?). Jenny and I are so blessed to
have such an amazing son. We are so proud of him. And we hope you all take
pride in his amazing recovery, because with out all of your continued prayer
and support we would not be here. We have never doubted Jayden's strength, or
our faith and that will get us to the top of the mountain we are all climbing
together! When I look into my sons eyes every morning and tell him how much
mommy & I love him, and how proud we are of him. I get an amazing feeling of
life, love & happiness. It recharges me and I know that everything is going to
be OK. Good night & God bless. -Love Andy, Jenny & Jayden
Jayden,
June 10, 2004
Well, with good bads, there are not so good days.
Today was not a productive day at all. Jayden was throwing up this morning
and Andy and I first thought of this medication they stopped (Lorezapam).
His doctor said he would ween him off, but he only gave him 4 days before
cutting it totally. Jayden, in our opinion, seemed to be going through
withdrawals with vomiting, sweating, and tremors. We approached his nurse
about what we thought and we also did some research on-line about
side-effects and withdrawals. Along with Martha, a co-worker and friend I
always turn to about researching medication, there was no doubt in our minds
it was withdrawals. After the nurse, spoke to the doctor about what we
thought, they gave him a full dose of lorezapam. He was able to keep it
down, along with pedia lyte at noon and his 4:00pm feeding. His doctor
believes now, he may have cut him off too quickly. (You think!!!!) He says
he will wein him off within a month. We think that's too long now, but we'll
talk to him again tomorrow about it. Jayden is back on the full mg every 8
hours. We think it's too much now as Jayden is very dopey today. We
cancelled all his therapies to let him rest. Hopefully, tonight he will get
a full night's rest and start anew tomorrow, we hope.
Please continue to pray for his speedy recovery. I,
personally, felt very upset and let down, but I know this is a minor
set-back. I know there will be days like this.
Andy and I thank you all and love you all for your
constant love and support. We need it!
Oh, by the way, Jayden is 3 1/2 months today! Thank
God we have been able to have him here to say that :)
Love,
Andy, Jenny, and Jayden
Jayden,
June 11, 2004
Hello all!
We had a good Friday today. Yesterday was a small
bump in the road, and today we are slowly moving forward again. Jenny & I were
a little upset yesterday due to fact Jayden was taken off his meds too quickly
and he went through some bad withdrawals. But we realized everything we have
gone through this is really nothing and it will be straightened out. We may
have slowed down a day or two, but we realized what's really important is the
fact we have Jayden here, and we can't complain about the little problems we
will face. There will be more bumps in the road, but thank God we have that
road! Jayden is a warrior, this morning he seemed like today he was going to
out of it, but by midday he was almost back on course. He is fighting to come
back so hard! Today he rolled on his right side and to his back by himself a
couple of times in bed. He is now stretching his left leg straight on his own,
and moving the right one quite well. He was very giggly today, being back at
full dose of his meds. He was in a happy place today, as were we! We must be
thankful for everyday and cherish every moment! We are so thankful to all the
Angels that watch over our family from above, and thankful to all of you who
are angels that help us through this! We are so blessed to have so many
amazing friends & family who have given Jayden, Jenny & I the greatest
support. I cannot begin to tell you how much we have touched by so many
beautiful people! The things that have been done and are being done. WOW You
are all some very beautiful people! Thank you for your continued prayer &
support! You all really have no idea how much you have done for us! Have a
great weekend! Good night & God Bless! Love Andy, Jenny & Jayden
Jayden,
June 12, 2004
Simple day. Jayden is doing much better. He's
showing great coordination with his hands. He's able to focus on an object
and reach for it.
He looks good. All the best to you all.
Love,
Andy, Jenny, and Jayden
Jayden,
June 13, 2004
Howdy Yall!
Its Sunday evening and all is well. We had a very
relaxed day with the family. It was a beautiful day so we got to spend some
time outside in the play area here at the hospital. Jayden enjoyed sitting
outside with his family and watching his cousins play. He is focusing very
good again and watching what is going on. We see more and more little things
everyday that just thrill Jenny & I. We are so thankful for everyday with
this amazing little boy! Tomorrow we start another week, and with that we
will do so much more. Jenny & I get to take Jayden out on Friday to another
hospital down the road for a swallowing test to make sure all the food is
going down the right tubes. We are looking forward to getting out with
Jayden even though is just for a short trip. And once they confirm that he
is swallowing right we can become more aggressive with the feeding. Well its
8pm and Jay is sound asleep, I think the fresh air knocked him out. Jenny
has gone home for the night, so I am gonna open up my cot and call it an
early night myself. Good night and God bless! Love Andy, Jenny & Jayden
Thank you for your continued prayer &
support!!!!!!!!!!! You all have made such a difference!
Jayden,
June 14, 2004
Hello everyone. Jayden looks really well. He
seems a bit more agitated, but he's doing well overall. So, we will
start the slower weaning process. The doctor brought his lorezapam level
down to .75 from 1 mg. They did 2 brief hearing tests on him today. One
checked for fluid or for any infections in his ears. He did great with
that. The other checked for inner ear activity. The results came back
abnormal. She says it shows some hearing loss, but it doesn't measure the
degree, whether it's severe or minor. There are 2 tests that she still
wants to do. Of course, I was distraught. Andy and I were both upset, but
we don't think he has total hearing loss from what we've seen. With
everything Jayden has gone through, things could be a lot worse. So, after
my breakdown, we went to a party here at the hospital. Jayden was into it.
He was very calm and would just observe everyone. After seeing so many
children with all sorts of problems, I realized how fortunate we are. I
won't let any doubts take over or lose faith. We will continue to adore
him like we do.
Take care and appreciate the people you have in
your life because things can change so suddenly. DON'T SWEAT THE SMALL
STUFF! God bless.
Love always,
Andy, Jenny, and Jayden
Jayden,
June 15, 2004
Jayden is doing fine today. He was in a really good
mood. He was laughing and playing. He did well with therapy. He ate an
ounce and a half of applesauce and rice cereal. The speech therapist says
that as soon as he is cleared with the swallowing test, we can be more
aggressive with his feeding. Of course, he'll tire quickly, but that will
change in time. Hopefully, Andy and I will be feeding him all sorts of good
things soon. He turned 3 times when the bell had been rung by his ear. He
definitely shows some signs of hearing, we just don't know how much.
Anyway, hope everyone is well. I want to thank my
friend, Tom and his wife, Jeannette for their visit. It's always a pleasure
to see them and talk to them. I also want to thank Sharee, who has come
several times while here at Specialized, as well as St. Joe's. You're the
best!
Love to all,
Andy, Jenny, and Jayden
Jayden,
June 16, 2004
Hello every body!
Super Jayden is at it again! Another great day
today, he did very well with his therapies. In occupational therapy he is
focusing on small balls and grasping them with his left hand and placing
some of them in a bucket. He is sitting up now with very little assistance.
Jenny and I have noticed that his right side is about 2 weeks behind his
left side. He is using his right side more and more each day. He can
straighten his left leg out and hold it straight, and he is trying with his
right leg. He is rolling from side to side by himself. he had a super
session in the pool today, he wears a floatation device around his neck and
his body floats freely in the pool. Today we was very relaxed and moving his
arm & legs around very well. We had a very nice visit today at the hospital
from the people from Z100 radio station. They were very nice and we got a
nice learning toy for Jayden, they were impressed with him. We gave them the
information on the Jazz for Jayden concert and that said they would be
announcing it for us! We thank them again for the BBQ and all the fun we
had, they were a very nice bunch. I personally thanked all the DJ's and
staff and they said it was nothing. I explained to them how much something
like this means to the families here, it brightens up the day a little more,
and in tough times like these every little bit helps. It reminds you just
how beautiful people really are. It is unfortunate though that it sometimes
takes tragedy to bring out the good in people. If we could just live
everyday caring for one another wouldn't it be great! We have been so
blessed with friends, family and even total strangers who done some amazing
things for us. Jenny & I sometimes just sit back and say wow! Jayden is
becoming so alert and concentrating on things so well now, he is really
coming back to us. Even though yesterday we were told his hearing has been
affected and to what degree we do not know. Jenny & I and most importantly
Jayden will not let any obstacle stand in our way. If we have to learn sign
language, or get him hearing implants whatever will be done. Jayden will be
at the Jazz for Jayden concert and whether or not he will hear the music is
not important, what is important is he will feel the love! Thank you all for
that love! Hey some of Bethovens best symphonies were written when he went
deaf! He sawed the legs off the piano and put it on the ground to feel the
music. Nothing will stop Jayden! He has defeated the worst odds already and
every day continues more & more! We can't till tomorrow to see what else he
does. I've said it before and I'll say it again Jayden is my Hero! I almost
forgot he ate 3 ounces of chocolate pudding today with no problems! He had
some moments of screaming today but everyone here assures us it is a great
step he is going through, and after this hopefully he move along a little
quicker! But we are still happy with our baby steps everyday up the
mountain. We have come a very long way in 10 weeks. Once again thank you all
for your continued prayer & support! Love Andy, Jenny & Super
Jayden!!!!!!!!!!
Jayden,
June 20, 2004
Sorry everybody we cannot
access our yahoo account. to send out emails or receive. We are doing
great! As soon as we get the problem solved we'll let you know all the
GREAT news! Love Andy, Jenny & Jayden.
I am having the best
Father's Day ever! I'll tell you all about the surprise!
Jayden,
June 21, 2004
Sorry we are still having
problems with our Yahoo account. Since we have not updated since Friday I'll
give you a quick recap. He did super on Friday with his swallowing test, so we
are now feeding more pureed foods and trying to feed him only by mouth until
we no longer need the feeding tube. We had a very special visit on Saturday
from Jayden's teachers from Union Conn. School in Montclair. Mrs. May & Ms
Casey walked into the room and you could see right away he got excited. They
read some of his favorite stories and sang some songs from class. They brought
Jay a beautiful book of pictures with his classmates. Their visit was very
helpful to Jayden's recovery and very special to us Thank you again! We had a
very good day of therapy Friday & Saturday, but today Father's day was the
best day so far!. Jenny & I were allowed to take Jayden home for a couple of
hours today. I could not have asked for a better present! Jayden was so happy
and comfortable in his home and especially his room. He was just looking all
around and full of smiles and giggles. Jenny & I were on top of the world
today! We hope our little trip today has sparked something in Jayden and he
will continue to move forward even more now. We
defiantly
feel he knew he was home today, and when we returned to the hospital he
started screaming and fussing. He was not happy to be back, nor were we, but
we must continue on with the great therapy we are doing at Children's
Specialized Hospital. And we know that soon we will be returning home for
good. I just cannot begin to tell you all the joy & peace I felt this father's
day. Although with a super son like Jayden I feel like everyday is father's
day. He makes me so proud, and has taught me so many valuable lessons in life.
Every beat of my heart is for him, the blood that flows through my veins is
full of him, he is my life! Good night & God bless! Thank you all for your
continued prayer & AMAZING support! - Love Andy, Jenny & Jayden
HAPPY FATHERS DAY!!!!
Photo of Jay & I sitting on our
couch at HOME today.
Jayden,
June 22, 2004
Hello everybody,
Alright our problem with Yahoo is solved our Email is
working fine. I hope you all got yesterdays email from my other account. Today
was really something great, they told us last week when we took Jayden home we
would probably see a difference after words. We sure did, we knew yesterday
Jay defiantly recognized being home, especially his room. And he was not happy
last night returning here to the hospital, but today he was so expressive and
verbal. He had so many new sounds and today during stimulations it sounded
like he said "no more" when they were holding garlic & curry under his nose, 3
times. He seemed to respond to the bell ringing by his ears this morning. He
ate pureed turkey with gravy and mashed potatoes for lunch. Tomorrow he will
receive breakfast, lunch & dinner pureed and as soon as he is eating it all
they will remove his feeding tube. We had him standing today with his leg
braces on with much less support than usual, and then we tried without his leg
braces and he did pretty good for a short time. He was sitting up today only
being held by his hands for balance. He did great moving in the pool today. He
is really trying to communicate with all his therapist and everyone he sees,
he is so vocal. He is just full of smiles and giggles. And Jenny & I are also
full of smiles and giggles too! He is slowly getting his coordination back. He
is just truly awesome to watch! I am still wiped out from yesterday, it was
the best fathers day ever! It was just so nice for Jayden, Jenny & I to be
home as a family again it was very overwhelming for me. I have always enjoyed
my time spent with my family, but now I cherish it! Hopefully we will continue
to take Jayden home on Sundays till we finally go home in a couple of more
weeks. The time flew by yesterday but Jenny & I enjoyed every second. It was
so nice to see all of our wonderful neighbors. Jayden really lit up when he
saw them, thanx Uncle Bobby & Joan, and Brenda Nancy, and thank you Chris for
keeping us fed with some great food. We are really blessed with so many
beautiful people like all of you around us. Thank you all again for your
continued prayer and support. Good night and God Bless Love Andy, Jenny &
Jayden
Thank you all for your fathers day wishes and telling
me what a great dad I am, but I am just being a dad, and I learned from the
best dad in the world! Love ya dad!
Jayden,
June 23, 2004
Howdy yall,
Gonna be real quick tonight, we just finished moving
into a private room. Jayden is becoming more aware of his surroundings and was
becoming over stimulated with all the activity in the room with 3 other kids.
It was affecting his stimulation therapies, so we now have our own room, I may
actually get some sleep tonight, its quiet in here. Jay is adjusting to being
fed pureed food slowly, its a little tough getting him to learn to eat again,
Jenny & I have to keep trying different ways to feed him. He will get it in a
couple of days. He is a trooper and doing great! Gotta finish organizing in
here, its amazing how much stuff you accumulate living in hospital for 10
weeks. Good night & God Bless. Love Andy, Jenny & Jayden
Thank you all for your continued prayer and support!
Thank you for all the amazing news we are receiving
about the Jazz for Jayden concert & the golf outing. You are all Angels and in
our prayers every night. THANK YOU THANK YOU THANK
YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jayden,
June 24, 2004
Hello everybody!
Jayden slept great in our private room last night, we
got up this morning and he ate almost half of his pureed breakfast. He
responded to sounds in his stimulation therapy. He sat up unassisted in
physical therapy. He ate more than half his lunch ( they want him to eat 1/2
of each meal sent up). He sat up with minor help and at the same time focused
on moving Sponge Bob magnets on a board (great gift Sharee). He ate more than
half of his dinner. He was in a fun & loving mood all day today. Jenny & I are
still smiling from ear to ear! He is trying so hard to speak to us. He says
mama. He is starting to say "no" when he does not want something, I am not
happy about that word but he is communicating. I was holding up an Elmo book
today and I asked him who it was and he tried over and over and you could
understand he was saying Elmo. There is nothing he can't do!. Thank you again
for all the continued prayer & support, for without you all we would not have
these wonderful days! Good night & God bless! Love Andy, Jenny & Jayden
Jayden,
June 25, 2004
What a Day!
First off Jayden had his hearing test today. Jenny &
I were very nervous for this test because we were unsure of the outcome. This
is the first of many tests but this one was important. Jayden was placed in a
soundproof room and voices and sounds at different frequencies were played to
his right and left. They watched for facial responses and turning to the
sounds. We were originally told Jayden has severe to profound hearing loss,
especially to high frequencies, we were told he was almost deaf. The normal
hearing range is 0-25 DB's , Jayden was originally thought to be around 100db
almost deaf. Now that I built up the drama today they felt he is around
35lb's, that's slight hearing loss. Yes Jenny & I cried with joy when they
told us. We are still going to learn basic sign language, because Jayden will
probably be able to communicate by hand before he can speak. Although today
was extremely vocal, we heard so many new sound combinations. He tried to say
so many words today. He ate about 75% of all of his meals today, they are
looking for only 50% and he drank thicken apple juice from a cup today. At
this rate the feeding tube will hopefully be out soon. He is getting so
strong, he sat up again today with little assistance and at the same time
played with foam using both hands, not just his left. He had never played with
foam prior to today, every time we tried he would pull away. Today was a very
special day also, today was the last day of Jay's coma stimulation. The
therapist all felt he responds so well now to the stimulation program he
graduated. Now they focus more on therapy, more intense and more times a week,
he is progressing at a nice pace! Jenny and I are just thrilled with how well
Jayden is doing. I hope you all are too! Don't forget you have played a big
part in his continuing recovery by all the things that have been done for us.
The prayer and support have done so much. And the love Jayden feels is
tremendous! Thank you! Hope you all have a great weekend. Good night and God
bless. Love Andy, Jenny & Jayden
I ask that you say a prayer for the family of a
childhood friend of mine who lost his father yesterday. I practically grew up
in the house behind mine with my good friend John, his brothers Mike, Paul,
Nick, his mom Linda and his dad John Alfieri Sr. John Alfieri Sr. was great man
who always made sure all the kids in neighborhood stayed out of trouble. he
was a very caring man who made sure we knew respect, but would still joke
around with us. He was a retired Passaic Police Officer, and worked security
in Passaic High School, Umpired Passaic baseball, and worked security in the
Capitol theater and used to get us into see some concerts & wrestling. You
will be missed. Our thoughts and prayers are with the Alfieri family. And I
hope that big John will now watch over Jayden the way he watched over all us
kids. -Andy
Jayden,
June 26, 2004
Had a great day today. Jayden took more thickened
liquid and he picked up a cheerio and put it in his mouth. He did that twice.
He ate about 75% of lunch and 100% of dinner. He was too sleepy to wake up for
breakfast. As soon as he takes in more liquids by mouth, the doctor will allow
the feeding tube to be taken out for a couple of days to see how he does. He's
making more sounds with his mouth and really trying to communicate. I think
he'll be saying simple words real soon.
He looks absolutely adorable, as usual. We're so
proud of him.
All the best to you all.
Love, Andy, Jenny, and Jayden
Jayden,
June 27, 2004
Hello everyone,
What a beautiful day today was! We took Jayden home
for the day again. As soon as we got home we saw our neighbor Joan, Jay took
one look at her and said "Joan". She and I were not sure and then Jayden
said again very clearly "Joan". He had a super day, he is so happy to be in
his house, and especially in his room. He ate all of his meals today. He was
just so happy today, we had a great day! Driving back to the hospital
tonight we were stopped at a light and I looked back at Jay, he looked at me
and said "dada". We got back to the hospital and Jen & I were wheeling
Jayden towards the entrance and he started saying "no no" and began fussing
around. He is really "waking up". We can't wait to see what tomorrow brings.
Love you all. Good night & God bless! Love Andy, Jenny & Jayden
Jayden,
June 28, 2004
We had our patient care meeting today. Jayden has
achieved most of all the goals and new ones have been set. The therapists
will work on standing when getting out of wheelchair. Sitting up from a
laying down position with assistance. Having Jayden feed himself with
utensils. Eating soft, solid foods. Having Jayden write or scribble.
Sounding out simple words as well as following simple commands. They are
very pleased with his progress and expect he will continue with more steady
progress. His doctor says we should be here another 3 to 4 weeks.
Special thanks to Gary Shaer for his assistance
with the Jazz for Jayden concert.
Thanks for all the prayers and support. Love to
all,
Andy, Jenny, and Jayden
Jayden,
June 29, 2004
Good evening all,
Another great day for Jay yeah hooray olay
yippeekayeah (alright I may be loosing my mind) He had some solid food for
lunch, Jay ate macaroni & cheese and did a great job. He did some super
sitting today with little assistance. And great standing with his leg braces
and support at his butt, and a little upper body support. He is getting so
strong. Jenny thought he was going to sit up this morning. Jay did a great
job again, but let me take a moment and tell you about some one else doing a
super job Jenny. Today is our 7 year wedding anniversary and there was no
fancy dinner or romantic evening, but we had the most important thing and
that is love. Love for each each other, love for the most incredible son in
the world, love for life, love for love. This event that unfolded 12 weeks
ago in our life could have destroyed us as individuals, as a couple, as a
family. But instead due to our combined love, strength, devotion, faith we
have taken on this journey with only goal. And that is to win! No if, ands,
or buts. Jenny & I keep each other strong when the other gets weak. Gives
the other a break when we need it. Gives the other a hug when needed. Gives
the other a kick in the butt when needed too. Makes the other laugh when
needed, and like I've said before laughter is the best medicine, and we have
alot of laugh medicine. I think some of the staff here thinks we are crazy,
but its just Jenny & I. Most importantly we help restore each others faith
when we need it. I don't know if I could of made it this far had it not been
for the most amazing woman in my life, my baby's mama Jenny. Happy
Anniversary Jen I love you, and I thank you for being a great wife, and the
most amazing mom in the world. I'm very sure I made the right decision when
I said "I do" 7 years ago. There is nothing we can't do together and as a
family. We have a long journey ahead, but I am positive we will be just fine
because we have each other. And we have the love for the most beautiful son
in the world! And we have the most incredible support from all of you out
there. Most importantly we have faith! Good night & God bless to you all!
Love Andy, Jenny & Jayden
A Note Form A Friend
HAPPY ANNIVERSARY!!! I love you all very
much!!!!! Seven years, what an accomplishment! Here's to the next 43+ that
you have together! HERE HERE! Love, Martha
Jayden,
June 30, 2004
I'll start this e-mail by saying thank you to my
wonderful husband for the incredible e-mail. He knows how much he means to
Jayden and me. He has been incredibly strong and supportive. He always
makes me laugh and I wouldn't have made it this far if it wasn't for him.
Jayden and I are so blessed to have Andy. I'm so proud of him and his
strength and faith.
Jayden did great today. He ate all of his meals
and drank much more thickened juice. He also ate a couple of pieces of
macaroni. He ate a few cheerios. He was picking them up off his tray. He
did well with supportive sitting and standing. Overall, he's had a very
good day and so did we.
I want to thank Jayden's classmates for sending
over such a wonderful care package of books, videos, and toys. I can't
wait for Jayden to see all the wonderful things he's received.
All the best to you all. Happy Birthday, Marci.
Love and many blessings,
Jayden,
July 1, 2004
Hello everybody,
Another great day in our greatest journey. Jayden
continues to prove why we call him the miracle boy. First off the feeding
tube is out of Jayden's nose. He is doing so well with his feedings, and
drinking thickened liquids they will try leaving it out, and we are
hopefully done with it, just when Jenny was getting really good at putting
it in (good job anyway). We will not miss it, it always seemed to be
bothering Jay. He is now taking his 2 meds every 12 hours by crushed pills
in pureed fruit. Soon he will be off the Atavan (relaxer) and they just
lowered his Phenobarb (anti seizure). Today Jayden was sitting and
kicking a ball again, his sitting is almost unassisted. He was standing
with his leg braces and only a little assistance, and was very calm. The
therapist held him up and began to walk him towards his wheelchair. He
would move his left leg forward on his own attempting to walk, his right
leg is still weak but with time will strengthen. I must admit I got very
emotional seeing Jayden attempting to walk for the first time today. He
has come so far in the past 12 weeks. He is focusing on things in front
him and beginning to play with toys, he is still weaker with his right
side be he is trying so hard. He does everything with a smile, a giggle, a
laugh and most importantly with his heart. Today we placed animal crackers
in front of him and would pick them up, place them in his mouth take a
bite, chew, swallow it down, and then take another bite. Its all coming
back to him. Jenny & I can almost make out some things it sounds like he
is trying to say. I had such a great time tonight, I curled up next to Jay
in his bed, and read some his favorite bedtime stories to him, he seemed
so focused and paying attention. I almost felt like we home in his bed and
none of this ever happened. He is returning and we will be back in his bed
soon, and he will be reading the stories to me, just like he did before
this journey. Well that is all for today. Jenny & I would once again like
to thank you all for your continued prayer & support. We have met so many
beautiful people throughout this ordeal. We would like to welcome to our
daily email list Larry & Lynette and their beautiful daughter Jenna. They
were our roommates for the past 8 weeks and have gone home because Jenna
is doing so well. We miss you guys, this place is not the same. Thank you
for all your help, guidance, experience, and just picking us up when we
were down. All we did was laugh in room 106, all the staff thought we were
all crazy. I think we are! Its not the same watching the Dave Chappell
show without you guys. WWWWHAT? Thank you to everyone who has touched us
along the way. Good night and God bless. Love Andy, Jenny & Jayden
For those of you starting your weekend early and
won't join us again until Tuesday. Have a happy and safe holiday weekend!
Jayden,
July 2, 2004
Jayden has another great day. He's taking his
medicine well by mouth and ate his chewable vitamin from home. He also ate
close to a 1/2 of a chicken finger and 3 fries as well as his pureed food.
He was in the pool today with weights on his legs. He was practically
standing in the pool, supported of course. He was on all fours today in
physical therapy. He was putting allot of weight on his right side and he
was supporting himself really well. The therapist still held him, but he
did the majority of the work. He looks great and his attitude is really
good. We take him home on Sunday and Monday, God-willing.
Hope everyone is well. Enjoy your weekend. Be
safe. Love and blessings to all,
Andy, Jenny, and Jayden
Jayden,
July 3, 2004
Hope you are all enjoying your weekend.
Jayden had a great day again today. He did more
great sitting, standing with assistance, and playing with toys. He ate
some turkey with half a slice of bread for lunch, and for dinner he had
some spaghetti with sauce and a little bite of meatball. He drank his
thickened liquid just fine today. He continues to improve everyday with a
smile on his face., and that gives Jenny & I the biggest smile. Who could
ask for anymore! Life is good. Enjoy it. Good night and God bless. Love
Andy, Jenny & Jayden
Jayden,
July 4, 2004
Happy
4th
of
July!
Love,
The
Singer
Family
Jayden,
July 5, 2004
Hello everybody,
Hope your weekend was enjoyable. We had a super one,
Jenny & I got to bring Jayden home on Sunday & Monday for the day. They were
two of the best days we have had as family. We just spent time together. It
was so nice just sit out on our back deck and enjoy a beautiful summer
afternoon just talking about the great things we will do together. It was so
comfortable for Jenny, Jay & I to just lay down in Jay's bed and take a nap
together. And the 3 of us sitting down and enjoying dinner as a family was
priceless. Just to have Jayden in our home again considering how close we came
to losing him, just fills us with life and love. We have truly been blessed
and are grateful for every moment we spend together now. Sometimes it is a
little hard having to start over with Jayden but he was such an incredible boy
to begin with, this time he will even be more incredible. If that is possible?
Can you tell I am a very proud dad? And that's because Jayden just continues
to do amazing things every day. These past 2 days at home he was saying so
many sounds, and trying new words, and just talking non stop putting words
together. He wants to communicate with us so bad. He just does not stop. And
he does it all with a smile, and when he makes us laugh, he laughs. I cannot
begin to tell you how much I enjoy watching him everyday as he improves, as
his determination grows stronger, as he defies the odds, as he comes back to
Jenny & I. This should somehow be one of the worst times of my life, but yet
seeing this miracle named Jayden everyday just fills me with life, love &
faith. I truly know what is important in life. I know what's brings real
happiness & joy. And I have seen the beauty in all mankind. And sleeping on a
cot every other night destroys your back, but for what my son has endured I
would sleep standing on my head forever and not complain about it. Don't sweat
the small stuff. Thank you again, each and everyone of you who read these
emails, who forward them to others, to everyone who follows our journey and
supports and prays for us. We are truly blessed for all of you! You are always
in our thoughts and prayers. We love you all! Good night and God bless. Love
Andy Jenny & Jayden
Jayden,
July 6, 2004
Today was a very busy day. We had a reporter from The
Herald News here at the hospital. Jayden had a packed schedule and the
reporter, Lisa and the photographer followed us through all of Jayden's
morning therapies. Jayden did great. He was very calm and focused through most
of his day. He seems like he's ready to speak any day now. He makes so many
sounds and so many facial expressions. He looks fantastic. I think going home
is the best therapy for him. He's fighting so hard to get out of here. Andy
and I are so amazed with every step forward.
Tomorrow we have 2 morning therapies and then he has
a CAT scan at a local hospital nearby. When he returns, he has an auditory
brainstem response (ABR) test. He will be lightly sedated to get a more
accurate reading. He should be pretty exhausted tomorrow. I will be praying
for him that all his test results come back normal or close to.
Please say an extra prayer for him as these tests are
major. Thank you for all the love, prayers, and support. Jayden has no idea
how much love is out there for him. Love and blessings,
Andy, Jenny, and Jayden
From Frankie
We are praying and we love all 3 of
you. Your little family is an inspiration of love and courage. Keep the Faith.
Jayden,
July 7, 2004
Hello all,
A bit of a confusing day but it was a very, very good
day! We were supposed to take Jayden for his CAT scan today but there was a
mix up with the hospital and its not until tomorrow. So we waited around and
we had Jay's ABR hearing test. This test was to check Jay's brain stem for
response to sounds at different levels. He did great with the audible test
turning his head to sounds in a room, but this test is much more accurate.
Jenny and I were very nervous the past 2 days about this test. But should we
have ever doubted "Super Jayden". The test showed his right ear hearing is
about 40-45 decibels with some nerve damage showing, but that can heal over
time. His left ear showed hearing at 35 decibels with some responses at 20
decibels with very little nerve damage showing. The normal hearing range is 0
to 25. My hearing range is probably about 30 due to all the custom stereo
systems I have played too loudly in my cars over the years. So bottom line
Jayden can hear normal talking just fine, whispering he will not hear all the
sounds. But this test will be done again in time giving the nerves time to
heal. The test also showed that Jay probably can't hear loud sounds right now,
this is due to the nerve damage. When a loud sound enters the nerve it cannot
handle it due to the damage and kind of shuts down. But this too can heal with
time. So Jayden has heard us all along, we knew it. All those songs we sang,
stories we told and the million times plus we have said "I love you" all got
through. Jayden only had a few therapies today due to the mix up with the
hospital, but in physical therapy he was held up under his arms and with no
leg braces on for the first time he placed both his feet on the floor and took
a little weight on them. Then with his leg braces on and very little support,
he was pushing up on his feet and tried to turn and step. As if this wasn't
enough today he was on his stomach and rolled right over onto his back
unassisted, this was a big step. He is my hero! Tomorrow is a also a big day
for us, we have the CAT scan to see how the swelling is on the brain. We will
be praying all night. The way Jayden is sounding things out and mumbling, we
feel he will be talking soon. He continues to bring us such joy and happiness,
and he just makes us laugh over and over again, the comedy side of his
personality is back. The rest is following along just fine. Thank you all for
the amazing things you have done and continue to do for us, for your continued
prayer & support. Good night and God bless. Love Andy, Jenny & Jayden
Jayden,
July 9, 2004
Good evening all,
The end of another great week. Jayden was sitting
without any support today, and putting a great deal of weight on his feet
trying to stand with assistance. Jay tried crawling with help, his left side
was crawling but his his right side is still weaker and needed to be moved,
but he did a super job of trying. He ate like a king today, everything on his
plate and then some. He had some baked ziti and garlic bread for dinner. Jenny
& I must still feed him his meals, but he is trying to help and hopefully will
be feeding himself soon. He does a great job of feeding himself snacks, today
he fed himself cheese, the garlic bread and some cheerios. Today he was
picking up balls and placing them into a canister when asked too, he has been
working on this for about a week now, and is getting it down. We are taking
things off of his wheelchair and giving him less support because he is getting
stronger. Jenny, Jayden and myself would like to thank our good friend Brian
Montague and everyone from the Passaic County Police Academy class 04-30-BCC
for there generous donation and support for our family. We congratulate you
upon your graduation and wish you all a very safe career ahead. You have all
already shown that you have learned the most important thing, and that is
helping others out when in need, even a total stranger. Don't ever forget
that, you will always be in our prayers. Thank you very much to the Bici
family and everyone at Liz Claiborne for your help at this time in our lives.
There are some amazing people out there! You have no idea how you have touched
our lives & hearts!. I would like to ask everyone out there if you could
please pray for some friends of ours who need it right now. We know how much
it has helped us and would like to pass it along to others in need. A prayer
for Butchie Padulla and his wife, if there is anything we can do to help
please ask. A prayer for Stanley Cleaves and his family who lost his nephew
in a tragic accident. A prayer for Melissa Kahlu, an almost 2year old girl who
was injured just playing, and is in a specialized hospital in Philly with
internal bleeding. All of your amazing prayer and support has done so much for
us we know it can help others. So please pray for all those in need of prayer.
Thank you. Good night and God bless, have a great weekend. We sure will, we
will be going home again for the day on Sunday. Love you all, Andy, Jenny &
Jayden
Jayden,
July 10, 2004
We had a very nice day today. Jayden said "ball" in
speech therapy when he played with one. He also said "more" when the ball was
taken away and then he said "more ball". He's trying so hard to speak. I think
he'll shock us all soon with more words. He's doing so well every day. He
shocks us all the time with his determination and will. He's definitely my
role model. Andy and I can't ask for a better child. He's everything I hoped I
have in a child.
Just want to ask everyone to continue to pray for the
others Andy mentioned yesterday. I also wanted to wish Kate and Carye a
wonderful, spectacular, and safe trip to Paris. You both deserve it. Love you.
Love and Blessings to all,
Andy, Jenny, and Jayden
Jayden,
July 11, 2004
Another great day at home. We just had a wonderful
time, the day went too fast. Jayden enjoyed his visit from his cousins Jenna,
Kayla & Joseph. Tomorrow we begin a new week on our journey, can't wait to see
how much more Super Jayden will do this week. So stay tuned............ Good
night & God bless. Love Andy, Jenny & Jayden
Jayden,
July 12, 2004
Hello all,
I don't know where to begin. Today was a
rollercoaster ride. First off Jayden did great in his therapies, he was saying
"bike" this morning so his physical therapist Laura put him on a special
tricycle and Jay went for a ride, he held on and peddled with assistance. He
really enjoyed it. He did some great standing in the pool, and even more
standing in the gym with Jayden taking assisted steps, he is getting stronger
and relearning. In speech therapy he was saying "more" and trying to say
bubbles. He was trying to say big bird then we went to trying to say Elmo, and
as soon as the therapist switched toys from Big Bird to Elmo he said "Big
bird" and then said it a couple of times. He did great eating. Then the doctor
informed us of the CAT scan, I can still feel the punch. Jay still has
swelling on the brain, they thought the fluid had gone down, but it is still
there. The doctor said it is not an immediate emergency but it must be taken
care of. So Jenny & I will go see a specialist at Columbia Presbyterian in
NYC. They may have to insert a shunt into Jayden's skull to relieve the
pressure. We don't know what the specialist will want to do but it will
probably be the shunt. It is something that once put in will always be in
Jayden for the rest of his life. Jenny & I took it a little hard, but it may
explain the slow recovery. There is a chance once the fluid is drained his
progress could go allot faster, a chance. We are just really nervous about the
surgery, it is minor but still brain surgery. His doctor here is so impressed
with Jay's progress even with the swelling. We will move along fast with this
and hopefully come to the best solution for Jayden's recovery. We ask for your
prayers during this time. For Jayden, Jenny & I , we could all use a little
more strength right now. We still stand strong and our faith will get over
this bump in our journey. Once again this too shall pass. Thank you to
everyone for your continued prayer and support. And thank you to everyone here
at Children's Specialized Hospital for helping us through today & everyday.
Good night and God bless. love Andy, Jenny & Jayden
PICK UP THE HERALD NEWS WEDNESDAY, OUR STORY WILL BE
IN IT. But you all already know it, and are a very big part of it. Thank you
Jayden,
July 13, 2004
Jayden,
July 14, 2004
Hello all,
We all had a really good day today. Jay is really
working on standing, in the pool and the gym. He is also trying more and more
to imitate facial expressions. And of course trying so hard to speak, every
now and then he gets a word or a very close sound out. We are still waiting to
find out when we will be going to Columbia Presbyterian to find out what the
specialist will suggest next for the fluid on Jayden's brain. After hearing
from so many people and their own personal stories with shunts, it sounds like
we have allot to gain. It could possibly improve Jayden within days. It is
just something we will always have to be aware of. We would just like to find
out all the options and move ahead with what will be best for Jayden. Jenny &
I are feeling much better today thanks to all your support and words of
encouragement. And we know we will all get through this thanks to you! We have
come so far and will continue moving upward on our journey. Thank you all for
your continued prayer and support. Love Andy, Jenny & Jayden
And who will be the first to bust my chops about the
news article stating " the delicate features resembling his dad's are again
expressive." Be gentile with me I am delicate!
Jayden,
July 15, 2004
Jayden is moving forward. He rode a bike today, with
assistance, but once the therapist would let go, he would peddle on his own a
couple of times. He also stood leaning against the mat, but with little
assistance, otherwise. He has also moved from pureed foods to soft solids. No
more thickened liquids, either. He has been very happy, smiling, and laughing
a little. He seems so much more happy and alert and watches everything around
him. Now, that they have stopped the Loranzepam all together (2 days ago),
he's really looking awake. Actually, he barely takes naps these days. Andy and
I are so proud. He's working so hard.
We were told today that the neurosurgeon has looked
at the CAT scans and believes Jayden will need the shunt put in. We may be at
Columbia as early as next week. We're hoping it doesn't interfere with the
concert. But, we'll see. He will be evaluated first and if he needs the shunt,
he will need to stay at the hospital for 2 more days, for evaluation. Dr. Y
says after the shunt is put in, he will try to extend his stay here at
Children's for another month. He seems to feel Jayden could make some serious
progress after the shunt is put in. Once the pressure is relieved after the
fluid is released, Jayden can really improve much, much quicker.
No matter how many e-mails or stories we hear about
the shunt, I'm still scared to death and will not stop worrying until after
this is all behind us. Unfortunately, the shunt will be a part of his life
forever, but it will not prohibit him in any way from doing whatever he wants
to do. We'll make sure he never feels limited in his life. He can be anything
or do anything he wants to do.
Love to all. Pray for the sick. It's always needed.
Happy Birthday, Mom! I love you!
Love,
Andy, Jenny, and Jayden
Jayden,
July 16, 2004
Super Jayden strikes again!
Today in physical therapy Jayden was walking with
assistance with his leg braces on and doing good, when his favorite therapist
Laura wanted to see how he would do without his leg braces. Laura sat on a
little rolling chair with Jayden standing in front of her with his butt
leaning on the chair. I was facing Jay & Laura rolling backwards on another
chair, while holding Jayden's hands. At first he was only lifting and moving
forward his left leg, then after a little help moving his right leg a couple
of times, he was moving his legs & feet in a perfect walking motion. He was
not placing much weight on his feet, Laura was supporting him up. But every
now and then he would take the weight on his left leg. Yesterday peddling
a bicycle and today walking motion, tomorrow the world! Alright calm down
Andy. Today he ate ravioli, fish sticks, & ice cream. He was drinking grape
juice. Thank you so much for a special visit from Jayden's teachers Mrs. May &
Ms Casey from Union Congregational Nursery School
, we know it means allot to Jay! And thank you to everyone at the
school who has done so much for us. Jenny & I can only pray that after the
shunt is put in and the fluid is drained from his brain he will continue with
his amazing progress, maybe even a little faster. He is a miracle and would
not be surprised that after the surgery he improves at even a faster rate.
Jenny & I have absolute faith in it! We look forward to going home for the day
on Sunday and just relaxing in the comfort of home! Hope you all enjoy your
weekend! Good night and God bless. Love Andy, Jenny & Jayden
Thank you all for the wonderful things you have done.
thank you for your continued prayer & support! We love you all!
Jayden,
July 17, 2004
Had a great day at home. We spent the day with the
family. My parents came by. My brother, Joe and his family and my favorite
cousins ever, Dolores, Richard, and Lianna were also over. Jayden had a great
time with everyone. He also had some special cuddle time with his favorite
TiTi (aunt) Debbie. It was so nice to spend time with everyone and to see
Jayden smiling so much.
I want to say a special thanks to Female Fitness (my
gym) for their donations. I miss going there and seeing everyone so much. I
want to thank my friend, Julie and David. I love you guys. I also want to say
thanks to Pat and Patty.
Tomorrow is a big day and hopefully we'll find out
when we're expected in NY.
Have a great night! Andy and I appreciate you all so
much.
Love and blessings always,
Andy, Jenny, and Jayden
Jayden,
July 19, 2004
Great day today. Jayden did great with riding a
tricycle, standing, and supported walking. He also did
incredible with standing in the pool. Although he had
weights on his feet, he stood almost totally
unsupported. He's also eating really well. Better than
he did before.
We have heard nothing yet about NY. Hopefully,
tomorrow we'll hear something. The neurosurgeon was in
surgery all day today but should be in the office
tomorrow. We'd probably need to be there about 4 days.
But when, is the question.
The internet is down at the hospital. Hopefully, it
will be up tomorrow.
I want to send a special thanks to John, Katherine,
Sharee, Martha and everyone else who has put so much
time and effort into Jazz for Jayden. You are all so
incredible. I'm so fortunate to work with you all. I
actually miss CPG. I also want to thank Dave Morrish,
for his time and talent.
All the best to you all. Love and blessings,
Andy, Jenny, and Jayden
Jayden,
July 20, 2004
Today was another good day for therapy and eating.
Jayden is doing well.
We are scheduled to be at Columbia at 10:00am,
Thursday morning. So, unfortunately, we will probably not be able to make the
concert. We are very disappointed, but this must be done. Jayden will be
evaluated on Thursday and if needed, surgery is scheduled for Friday. Saturday
and Sunday will be for observation and God-willing, we'll be back to
Children's by Monday. Andy and I are very nervous. Jayden has been through so
much, we don't want him to go through anything else. But if it must be done
than we'll move forward and pray Jayden progresses very quickly after that.
Please continue to pray. This bump in the road scares
us and the support and prayers always help.
Love and blessings to all,
Andy, Jenny, and Jayden
We are praying little man. We love
you, Your angel family.
Jayden,
July 21, 2004
Good evening all,
Jayden had another great day riding his special
tricycle, he is really peddling. That's my boy! We will be leaving tomorrow
morning for Columbia Presbyterian Hospital in NY for testing and we are
scheduled for surgery on Friday. We will see what the neurosurgeon says
tomorrow? Jayden will most likely need the shunt to relieve the fluid build
up. And that will hopefully make Jayden's recovery easier for him. We would
like thank Sheriff Jerry Speziale and the Passaic County Sheriff's Department
for everything. Jayden is going to love the motorcycle escort! We will not be
able to send out updates until we get back here to Children's Specialized
Hospital. So Jenny's brother Joe will keep you all informed of our progress in
NY. Joe will also be reading a letter from Jenny,
Jayden & I at the concert, we will be there in spirit. Enjoy! Thank you
all for your continued prayer & support. We will be back online hopefully by
Monday, and with great news to report! We have faith in that! Love you all.
Good night & God bless. love Andy, Jenny & Jayden
Please pray for Jayden on Friday, your prayers have
worked miracles & will continue too! Thanx
Jayden,
July 22, 2004
Hello All,
Since Jayden, Jenny and Andy are in NY now, access
to their Yahoo account is not possible at this time so I am doing today's
update from what I can tell you.
This morning Jayden was transported to Columbia
Presbyterian by the Passaic County's Sheriff's Dept. with motorcycle escort.
I'm sure Jayden loved every minute of it. Jayden underwent some routine
evaluation procedures which included chest x-ray and an EKG. Everything went
well and Jenny and Andy are in an upbeat spirit. Jayden will undergo his
procedure tomorrow somewhere around 7:30 - 8:00am. Please keep Jayden in
your prayers and thoughts tomorrow. I will update you all further tomorrow
as soon as I get any news on Jayden.
Now onto today's concert..
We had a great time. There was an excellent turn
out tonight. Jazz for Jayden was a huge success. The band was fantastic and
the singers Dave Moorish brought, along with himself, were terrific. It was
an upbeat night. Of course the only thing missing was the attendance of the
star himself, Jenny and Andy. I know you guys were with us in spirit. We
were given a special surprise by Ariel which was captured on video. She did
an awesome job.
All the folks at Clinicians did an awesome job and
we can not thank you enough for the time and effort you put into this
memorable night. The Passaic County Sheriff's Dept. provided us with mounted
police. The kids loved the horses. They were beautiful to look at. Andy and
Jenny, there were many words of encouragement from the performers and their
prayers along with ours are with you guys. Many of the songs were dedicated
to our little man.
Andy, I read the message you wanted me to read and
don't worry I didn't mention that you really wanted to attend the
concert so you could perform and fulfill your dream of being in boy band
like N'Sync..It's our secret. I'm sure I was able to get your message
out to everyone with my incredible public speaking skills (sarcasm).
It's safe to say that I will not be doing any
speeches at the U.N. anytime soon.
I wanted to get out my own thanks to specific
people. I'll use this as a second chance to say what I wanted.
I wanted to thank Pat Murray, PBA President for the
Passaic County Sheriff's Dept., for all his support. He rallied the
brotherhood and they responded ten-fold since day one and continue to. Thank
you Pat for all you have done and continue to do.
Tom Yackeren from Clinicians, who has been a very
important person in this whole process as he has put all the medical terms
and treatment methods in a language we could all understand better. He has
been a big part of Jenny and Andy's ability to cope with all of this.
And finally, to Andy and Jenny (this is where I
choked up tonight on stage.. whatta sap I am)...
You two have been an inspiration to us all. Being
able to continue to battle with Jayden in his recovery has been incredible
to watch and be a part of. You have all touched many people, not only here
in NJ but all over the country, and even outside of the country. Your
continued strength is unmatched. I know you guys are humble and will give
the credit to others but you are there every night sleeping in very
difficult conditions, going through all the therapies with Jay. You say
Jayden is your hero, and he definitely is, but the apple didn't fall far
from the tree. Continue to keep a positive outlook and don't worry about
looking back, because we are all here behind you to catch you if needed.
God bless you all. Have a goodnight.
"Uncle" Joe
Jayden,
July 23, 2004
Spoke to Jenny today. Everything went great. The
procedure lasted around 45 mins. When she called Jayden was in bed watching
Monsters Inc., drinking water and had eaten some applesauce. It was the news we
had hoped for.
Jenny sounded good. That was a big step and it went
well. She said they may have heard him say "daddy" "mommy" but not sure. The
drainage process has begun and the only real question will be how quickly his
system drains the fluid. That will determine the progression of his swelling.
I'll send another update tonight as I get more info.
My parents are at the hospital now so I should be able to get some word during
the day.
Thank you all for your prayers last night. It's now
that I feel Jayden is beginning the tail end of his ordeal.
Thanks again!
"Uncle" Joe
Jayden,
July 24, 2004
Sorry for the late update.
Jayden was doing well when he first was brought back
to his room. Later in the day he developed a fever and nausea. This is common
with this type of operation as his equilibrium would be off in addition to the
common symptoms one can get with coming off if anesthesia. He has had discomfort
but Andy and Jenny have been doing an excellent job trying to keep him calm and
for him not to try and feel the bandages he has. Which again is a good sign that
he is moving his arms around with no problems. Doctors were treating the fever
and we hope he has a good night's rest along with Andy and Jenny.
Everyone is upbeat and look forward to resuming
Jayden's therapy. We're hoping he may go back to Mountainside on Sunday evening.
Thanks to all for inquiring throughout the day.
Have a good night and talk to you all tomorrow.
"Uncle" Joe
Jayden,
July 25, 2004
Good Morning All.
Yes, it's me again.
Unfortunately Team Jayden could not leave the
hospital yesterday. Jayden still had some vomiting and the doctors would
rather see him go 24 hrs without vomiting before he is released. Also they
wanted the neuro surgeon to check on him as well. Jay is looking great. My
wife, son and I went to visit them yesterday. He looked terrific. He doesn't
like to swallow right now due to his sore throat so he holds everything in his
mouth right now. Jayden was looking like a puffer fish. From time to time
Jenny and Andy would get him to swallow, and once he did, he showed you that
dynamite smile. He was very playful and did giggle a few times. Jay is really
moving his right side much more then I'd seem him do in these months. Jenny
and Andy looked fine but they'd rather be in Jersey now.
Jenny and Andy do expect to have Jay released today
but I won't know for sure till later. His "presidential" escort awaits him for
the trip back to Mountainside.
That's all I have for now. Have a great day.
"Uncle" Joe
PS- Missy, thanks for the smack in the head :)
Jayden,
July 26, 2004
Real quick we are back in NJ at Children's
Specialized Hospital. The surgery went perfect. Jay is doing great. We all
are. Thank you so much to everyone at the Passaic County Sheriff's Dept for
the transport. Love Andy, Jenny & Jayden
Jayden,
July 27, 2004
Well, our days
haven't been boring. unfortunately, Jayden starting vomiting again yesterday.
poor Jayden, with poor Andy, who watched him all last night, had a rough night
last night. today they hooked up an iv, so he wouldn't dehydrate. they also
gave him an anti-nausea medicine. they called his neurosurgeon, who said
Jayden is probably suffering from over drainage. basically, the fluid may be
draining too quickly and the ventricles may be going down to size too fast.
he's not positive this is happening, but it seems to be the logical
explanation. he feels the shunt is working properly. Jayden had to spend the
day laying down with little head elevation. the quick drainage causes
dizziness, nausea and vomiting. he looks much better than he did this morning.
he should be feeling much better by Thursday. if not,
he will need another CAT scan. hopefully, he will not need to go back to
Columbia.
Andy and I are totally exhausted these days. but,
it's nothing compared to Jayden's exhaustion.
we're praying for better days ahead. keep praying.
love and blessings to all,
Andy, jenny, and Jayden
Jayden,
July 28, 2004
Howdy yall,
Its Tuesday evening and Jayden is doing better
today than he was yesterday. He stayed in bed all day with very little
movement. Jay ate a good amount of Ensure pudding, he would have had more be
we are going to take it slow. He had some small sips of juice. They took out
his IV line today, but he is still getting anti nausea medication because he
vomited a little today. He looks a lot better today and seems in better
spirits, but still a little out of it. Jenny & I know tomorrow will be a
better day and we intend to get him out of bed and into his wheelchair, and
slowly back into his routine. We were happy to see a few smiles & giggles
today and I was singing his favorite TV commercial "Zoo Pals" to
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