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Jayden's Grandfather has gone to be with our Heaven Bound Angels

 

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 Œ touch achord¹ 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!
http://www.meningitis-angels.org/Jayden.htm   Thanks again Frankie you have helped so much!

Jayden, 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

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
Please learn more about Meningitis 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
 

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 puréed 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
Check out http://www.jazzforjayden.com/  Martha you did a super job!

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
also http://meningitis-angels.org/ for Meningitis Information.
 & http://meningitis-angels.org/Jayden.htm for prayers for Jayden.
 And for all the updates http://meningitis-angels.org/Jayden's%20Journal%20to%20Recovery.htm thank you so much Frankie!!!!!!! for everything.
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
http://www.jazzforjayden.com/ find out all the concert info.
http://meningitis-angels.org/ for information. Thanks Frankie!
http://meningitis-angels.org/Jayden's%20Journal%20to%20Recovery.htm for all of the updates. Frankie you are the best!
http://meningitis-angels.org/Alexa-Meningitis-Walk-A-Thon-2004.htm  PLEASE CHECKOUT! THIS WALK WILL BE IN WAYNE NJ. WE WILL ALL BE THERE!

 

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

 

 him and he began to sing along, not word for word but he was singing the words the best he could. Otherwise Jay was very quiet today, he is just going through so much but as always doing a super job! Jenny & I were feeling much better today seeing Jay doing better. Yesterday we were feeling quite down but we keep our faith and we know in hearts this is just another bump in the road, and that Jayden is going to be just fine. We still have a way to go in this journey. And what is a journey if it is just a smooth road? Once again thank you all for your continued prayer and support. It really helps Jenny & I through these tough times. I know some times we don't always respond to every email do to our hectic schedules here. But we each read every one of them, and they mean so much and help so much. Thank you again! We love each and every one of you! Good night and God bless. Love Andy, Jenny & Jayden
Please pray for all those in need of prayer. We have met so many beautiful families here, and so many amazing children here. We ask that you keep them in your prayers also. Thanx

 

Jayden, July 29, 2004

We had a better day today. Jayden was able to get out of bed and did some therapy. he stayed in his chair. we're taking things real easy these days. we're following Jayden's lead. he was able to eat yogurt, ensure puddings, and some pasta. he looked much more like himself with smiles. we hope to have Jayden back on track tomorrow.
 
Please continue to pray for him. we know with time, faith, love, and patience, our boy will be back.
 
Love and blessings to all,
Andy, Jenny, and Jayden

 

Jayden, July 30, 2004

I just got some decals on the back of my truck. I hope they are ok? Thank you so much for every thing you have done for us Frankie. Jenny, Jayden & I you know will do all we can to support the "Angels" whenever you need us.

Love Andy, Jenny & Jayden

It is the three of you that have given us all hope and aloud us to share n a beautiful family full of love.

Thank You, Frankie and Your Angel Family

Jayden, July 31, 2004

Simple day. Jayden just laid low in bed. He ate some crackers and pudding. It seems like he has a stomach virus. He's been spiking some fevers. Hopefully tomorrow he'll feel better enough to sit out of bed.
 
We're hoping he's better for his therapies this week.
 
Love and blessings to you all,
Andy, Jenny, and Jayden

Click here to go to Jayden's Journal Part 2 August