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APRIL 29,2004
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(Jaydens
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 Sheriif 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 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 alot! 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 paraylisis which he is moving almost completely, seizures which are controlled by meds
now, 2 strokes and swelling on the brain which we are now begining 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
weened 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 alot of therapy and relearning everthing 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!
MAY 1,2004
HEY EVERYBODY!
Its saturday evening and Jayden
is just setteling 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 supossed
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 diffrent ways. THANK YOU!
Good night and
God bless!
Tomorrow we start another beautiful day with our miracle!
-Love Andy, Jenny & 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, neuroligists, & therapists who will go over Jaydens 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 foy Jaydens sake! This is the hardest time in our lives, but we nkow 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(thanx for teaching me that dad)!
MAY 3,2004
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
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 alot 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 blesssed 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
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 dicussed 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
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 lttle
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 begining 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,
stonger 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 agreat 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
Please learn
more about Meningits at http://meningitis-angels.org/ Thank you Frankie & God Bless you. You are an Angel!
Please visit
Jayden's page at http://meningitis-angels.org/Jayden.htm
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
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 definatley 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 beautful 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 alot 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 recieve. 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
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)
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 definatley 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 learing 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 greatist 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!
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 layed 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
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
outtage for about 3 hours. The generaters 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. Scarey.
Anyway, all the best to you all.
Love,
Andy, Jenny,
and 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 wil 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 thats 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 cryed with joy when we heard that. We know we just have to take baby steps and can't rush
anything, there are no definate 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!
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 alot with the aggitation 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 beatiful 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
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 & I. 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
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.
Again, all updates can be found at
http://www.meningitis-angels.org/Jayden.htm
Love & blessings,
Jenny,
Andy, and 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 puried 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 Childrens 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 everynight! THANK YOU! Good night & God bless! Love Andy, Jenny & Jay
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
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 puried 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
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
MAY 23,2004
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 begininning 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 alot 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 spiratually 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
Win
Brian McKnight
Dark is the night
I can battle the storm
Never say die
I've
been down this road before
I'll never quit
I'll never lay down, mmm
See, I promised myself that I'd never let me
down
So I'll never give up
Never give in
Never let a ray of doubt slip in
And if I fall
I'll never fail
I'll
just get up and try again
Never lose hope
Never lose faith
There's much too much at stake
Upon myself I must
depend
I'm not looking for place or show
I'm gonna win
No stopping now
There's still a ways to go, oh
Someway,
somehow
Whatever it takes, I know
I'll never quit, no, no
I'll never go down, mmm, mmm
I'll make sure they remember
Jayden's name
A hundred years from now
I'll never give up
Never give in
Never let a ray of doubt slip in
And
if I fall
I'll never fail
Just get up and try again
I'll never lose hope
Never lose faith
There's much
too much at stake
Upon myself I must depend
I'm not looking for place or show
I'm gonna win
When it's all
said and done
My once in a lifetime will be back again
Now is the time
To take a stand
Here is my chance
That's
why I
I'll never give up
Never give in
Never let a ray of doubt slip in
And if I fall
I'll never fail
I'll
just get up and try again
Never lose hope
Never lose faith
There's much too much at stake
Upon myself I must
depend
I'm not looking for place or show
I'm gonna win
Mmm, I'm gonna win
MAY 24,2004
Hello everybody,we
have internet service back!
Its monday evening and we started off our week just great! Jayden started off with a very good
nights sleep. Then he had stimulation wich he responded to very well, he is starting to push things away or grab for them.
Next we had oral stimulation which Jayden is doing better each time swallowing and taking little amounts of baby food, we
are getting closer each day. Then we had pool time where Jayden was very relaxed and got to stretch out. We then took a nice
bath and got ready for occupational therapy, where Jay was sitting up better with assistance and he was beginning to grab
for objects and hold them with his left hand, his right is still a little weaker from the paralysis but getting stronger.
His movements have more meaning and control to them with every passing day. We then had feeding time(through the nose tube)
which Jayden did much better with, his coughing is more controlled so he has less flem and no vomiting today. After feeding
we had more stimulation where he is responding good to eye movement. Where he is beginning to focus on objects and begin to
track them. Blink or move his head away from a flashlight shined in his eyes. He is doing very well to touch stimulation by
pulling away from pinch or vibration, he is beginning to swing at the therapist during these stims(which is a good normal
response). We are still unsure with his hearing stims, sometimes he seems to respond and other times nothing. But there have
some definate noises we are sure Jayden has heard. Then we went to the gym for physical therapy where Jay did some good stretching
and was lifting his head for long periods of time with good contol, he is getting much stronger. We came back for some more
stimulation where he did some touching and folling objects with his eyes. Then we have some more oral stimulation with more
good swallowing and tried a little more baby food. The therapist feels Jay's taste buds might highly sensitive right now so
tomorrow we will try thickened water(baby food with no flavor). We then had our dinner feeding which went just fine. Then
Jay went in his stand up table, where we stand Jay in an upright position for about 45 minutes. Now he is in bed watching
his favorite Spongebob Squarepants, his eyes lock on the TV. Yeah for Spongebob! Jenny and I have been doing a great job setting
up and administering Jaydens feedings and his medications. We have to check the placement of his feeding tube by listening
with our own stethoscope to Jay's stomach. And wednesday I will learn how to change Jayden's feeding tube since he may be
coming home with it in a couple of weeks. Jen & I have learned alot these past couple of weeks, but as parents we will learn
and do anything for Jayden! We have another great day here, Jen has gone home to rest tonight and I will hang out with Jay
until he falls asleep. Then we have another couple here in the room Larry & Lynette, they have a premie baby Jenna who is
doing just great. They are a blessing, we have the most fun with them just laughing and joking and getting stupid. At times
like this that is what we all need, like I learned from my dad laughter is the best medicine. Well good night & God bless
you all! Thanx again for all your continued prayer & support!
Love Andy, Jenny & Jayden
MAY 25,2004
Quick update.
Doing well. Handling a lot more stimulation without aggitation. Still working on swallowing tiny amounts of pureed fruit.
The coughing issue is still there but much better than it was.
Keeping our faith strong, even though we want to collapse
some days.
A special thank you to John Caggiano, from my job, who has spoken to several of our printers about our situation.
They have been kind enough to send donations to Jayden.
We have an unbelievable amount of support from some great
people. Thank you!!!
All our love,
Andy, Jenny, and Jayden
MAY 25,2004
Hello everybody,
Another progressive
day today. Jayden is focusing on objects for short periods of time, and following them also for short periods. He is really
showing great improvment with his head control and upper body. He is using more mouth muscles everyday which gets him closer
and closer to eating. He is really looking great! Today was a very vocal day for Jayden, he sure let us know when he was not
happy by yelling or almost crying very loudly, a very good response.He makes us so proud eveyday by waking up a little more
and fighting to get everything on track with his brain. Jayden makes progess everyday and will continue thanks to all the
wonderful prayer & support we recieve. Good night & God Bless. Love Andy, Jenny & Jayden
I'm strong enough to rise
above most any troubled time.
Today may be a mountain but I was born to climb!
Thanx April & Ariel, we love you!
MAY
27,2004
Hello all,
Jayden is doing well. He's becoming more and more vocal. He lets you know when he's uncomfortable
by yelling out. As much as we want to hear him say "no", we'll take the yells. He also focusing and tracking on objects and
people better. His physical therapist said he showed the best head control today. His swallowing is getting better, so hopefully
he'll get stronger swallows for food intake. It's slow, but sure. Little by little the improvements are shown.
Hope
everyone is well.
All the best to you all. God bless.
Love,
Andy, Jenny, and Jayden
MAY 28,2004
HAVE
& HAPPY & SAFE MEMORIAL DAY WEEKEND ALL!
We have a memorial day today. Jayden did outstanding today. He was definatley
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. Thanx 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 tounge around alot. 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 secenario when he
was 6. He had spinal menengitis also, it was a different type but he went alot 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 recieved 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 gonna sit
with Jay and watch Spongebob. Have a fun & safe weekend all! Love Andy, Jenny & 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
MAY 30,2004
Hello
everybody,
Hope you are all enjoying your holiday weekend. I know we are. Jayden is doing awesome, he is waking up more
and more each day. Today when he saw me in the morning he laughed at me, just like most people do! He was very vocal today
trying different sounds. I had a great moment today when I had Jay sitting on my lap and he reached up and held onto my goatee
for a while, that is something he always did, and will continue to do! We had a very good day with family & friends today.
Tommorow is a holiday and there will be no therapist here but Jenny & I will continue to do Jay's stimulations & therapies
as normal. He really looks great! Have a happy & safe holiday. Thank you for your continued prayer & support. Good night &
God Bless! Love Andy, Jenny & 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
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