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. Thats 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 definatley 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!!!!!!! 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 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 improvment. 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!!!!!!!!!!!!!!! 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 aggitation 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 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 alot to so many people, but you really have no idea how much has been done for us. From friends & family, to total stranges 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 definatley moving upward everyday. We can look back now and see how many things we have already accomplished. Jayden is doing a super job! Well thats 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 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 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 JUNE 8,2004 JAZZFORJAYDEN For Immediate Release Please contact: John Caggiano, 973-954-9267 Katherine Wandersee, 973-954-9283 Jazz for Jayden Benefit will Touch a Chord at Montclair Summer Arts Concert Series June 8, 2004, Montclair, NJ - The Jazz for Jayden Benefit will ‘touch a chord’ 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 Singer, a beautiful and vibrant three-year-old resident of Bloomfield and a student at Union Congregational Nursery School in Montclair was suddenly stricken with a severe form of bacterial meningitis on April 8, 2004. In intensive care at St. Joseph’s Hospital he endured a coma, strokes, seizures, near-total paralysis, kidney failure, and potential brain damage as family and friends were at his side, praying for a miracle. The miracle came as Jayden defied the odds, now in rehabilitation at Children's Specialized Hospital in Mountainside. His mother Jenny, a local graphic designer and father Andy, an officer with the Passaic County Sheriff's Department, have dropped everything to be with Jayden night and day during his arduous journey to recovery. Jayden must relearn everything - how to swallow, speak, hear, move, and walk. Although he is responding to therapy and delighting his family with small wonders like saying "Momma," much work lies ahead of him. Friends, family, colleagues, and groups like the Meningitis Angels have rallied to support Jayden. Unfortunately, the reality of medical costs is overwhelming for the Singer family. In light of this challenge, Dave Morrish and the Montclair/Bloomfield communities decided to create the Jazz for Jayden Benefit to raise the much-needed funds. Cool looking Jazz for Jayden tee shirts will be sold to supplement the fund drive, with sponsors’ names appearing on the tee shirt. For sponsorship opportunities and other information about this worthy endeavor, please contact John Caggiano at 973- 954-9267, or Katherine Wandersee at 973-954-9283. 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 aggitated. 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 JUNE 9,2004 Hello everybody! Its tuesday night(I think) and we are haveing 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 alot 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 puried 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 wiseguy 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 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 ween 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 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 straightend out. We may have slowed down a day or two, but we realized whats 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 greatist 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 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 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 aggresive 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! JUNE 14,2004 Hello everyone. Jayden looks really well. He seems a bit more aggitated, but he's doing well overall. So, we will start the slower weening 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 JUNE 15,2004 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 Beethovens 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!!!!!!!!!! JUNE 16,2004 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 JUNE 17,2004 Hello everybody, Its thursday evening and we had another Super Jayden day! These past 2 days he has been waking up in such a happy playful mood, but today he was even moore alert and trying so hard to speak to Jenny & I. We heard so many new sounds from him today. Jayden's personality is really showing now, he is so giggly and comical. We are on such a high right now, he is doing great! Tomorrow Jenny & I get to take Jayden in our car down the road to another hospital for his swallowing test. We are looking forward to getting out with Jayden for a little bit. Hopefully the test will go well, and as long as his swallows are good they will start to feed Jayden more aggresively. He ate some puried pears today but did not want them so we tried applesause, which he has been eating fine, and he wanted the applesause. He always was a picky eater, and showed it today. He had some more cheerios today. He really wants to eat.Jay got a new stand up table today, this one replaces the old one he had. This one makes him use more of his leg strenght to stand up, and puts him perfectly upright, and has no head support. He has such good head control now, he is getting so strong. He is really using his right side more and more. He really is truly amazing to watch. Well we have a very busy day tomorrow so I'm gonna try and get some rest now. Good night & God bless. Thank you for your continued prayer and support. Love Andy, Jenny & Jayden JUNE 21,2004 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 afterwords. We sure did, we knew yesterday Jay definatley 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 puried turkey with gravy and mashed potatoes for lunch. Tomorrow he will recieve breakfast, lunch & dinner puried 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 BrendaNancy, 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! JUNE 22,2004 Today Jayden ate about 2 oz of pureed food for lunch and close to half of his dinner. The therapists are very happy with his progress and feel they should try more challenging tasks like following more commands and picking out objects and colors. He also sat today leaning back against support but would catch himself if he went side to side. He's doing very well overall. They have changed his feeding to account for mouth feedings as well as tube feedings. We'll see how that goes. Hopefully, it won't be too much for his stomach to handle. We'll see. Thanks for the continued support. Love, Andy, Jenny, and 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 puried 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 recieving about the Jazz for Jayden concert & the golf outing. You are all Angels and in our prayers everynight. THANK YOU THANK YOU THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 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 puried 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 Spongebob 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 tryed 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 wondeful days! Good night & God bless! Love Andy, Jenny & Jayden Check out www.jazzforjayden.com Martha you did a super job! 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 35db's, that's slight hearing loss. Yes Jenny & I cryed 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 soud combinations. He tryed 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 thickend 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 agin 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, everytime 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 securtiy 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 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 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. 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 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 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, Andy, Jenny, and Jayden JULY 1,2004 Hello everybody, Another great day in our greatist 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 puried fruit. Soon he will be off he Adavant(relaxer) and they just lowered his Phenabarb(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 roomates 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 Remember checkout www.jazzforjayden.com also http://meningitis-angels.org/ for menigitis 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! 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 alot 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 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 Happy 4th of July! Love, The Singer Family 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 thats 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 whats 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 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 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 untill tommorrow. 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 decibles with some nerve damage showing, but that can heal over time. His left ear showed hearing at 35 decibles with some responses at 20 decibles 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 JULY 8,2004 We took Jayden today for his CAT scan. He did great. We stayed by his side, holding his hands and sang 2 songs to him and it was done. We'll probably have the results next week sometime. He's doing great with unsupported sitting and his standing is much better. He had a great day and so did we. Looking forward to taking him home on Sunday. Love and blessings to all, Andy, Jenny, and 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 congradulate 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 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 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 www.jazzforjayden.com find out all the concert info. http://meningitis-angels.org/ for information. Thanks Frankie! http://meningitis-angels.org/Jayden.htm For Jayden's prayers 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! JULY 12,2004 We had another good day. Jayden is doing fantastic with standing (supported). He was very focused and intent on standing in the pool. With weights on his feet, he was able to stand in the pool. The therapist would hold his upper body and knees straight. His doctor has reduced his lorazepam to once a day (.25mg ) for a couple of days. I'm assuming by the end of the week, he'll stop it all together. We're still waiting for the results on the CAT scan and he'll draw blood to check phenobarb levels. He's very pleased with Jayden. Just wanted to thank some special visitors today. Tom and Jeanette stopped by. It's always great to see them and get Tom's professional opinion on Jayden's progress. I also wanted to thank Linnea and her mom, Mrs. O for visiting. Linnea is my best friend since I was 9. She's 7 months pregnant and looks fabulous. They brought some neat presents, but the most special present was Anthony, Linnea's husband, transferred our wedding video to DVD. I can watch it here at the hospital. Thank you so much, Anthony. I love it. Now I can watch one of the most special times in my life over and over. I love you all so much. Please continue to pray for Melissa, Tina's niece who is at CHOP in Philly. She is less than 2 years old and going through a very tough time. Love to all, Andy, Jenny, and Jayden JULY 13,2004 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 alot 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 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 alot 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 It began as a slight fever and some vomiting, not a big deal in the world of childhood diseases. Admittedly overprotective, Jenny and Andy Singer of Bloomfield took their 3-year-old son, Jayden, to the pediatrician. The boy showed signs of improvement. By the next night, however, the vomiting returned, violently so. Jayden looked dehydrated, the physician told them. This time, he was checked for neck and joint stiffness. Blood work revealed his kidney functions weren't quite right. On April 8, Jayden was admitted to St. Joseph's Regional Medical Center in Paterson. He became lethargic and his condition declined rapidly. Nurses rushed him to the pediatric intensive care unit for a spinal tap. Jenny and Andy waited three hours for news. It felt more like three months. "We became very concerned," said Andy, 34. "We knew it was more than dehydration when he stopped speaking to us." The results came back: Jayden had contracted a form of spinal meningitis through pneumococcal bacteria. As an infant, he received a Prevnar vaccine that fends off seven strains of bacteria, just not the one he happened to encounter. Within the first 72 hours of Jayden's hospitalization, his brain swelled and he suffered two strokes. During that time, his body began convulsing with seizures, and he experienced almost total kidney failure. Jayden breathed through a ventilator for 10 days while doctors fought the disease with intense doses of antibiotics. His kidneys began working again and the medication knocked the bacteria out of his system. For three weeks, he remained in the hospital while Andy and Jenny experienced a gamut of emotions, not knowing whether their only child would live, and if he did recover, what type of permanent neurological damage had been done. As doctors prayed over Jayden's bed, the Singers quickly learned that medical science isn't an absolute, because each case of spinal meningitis is unique. "We've realized that brain trauma should be called the 'I Don't Know Disease,'Ÿ" Andy said, pointing out that he and his wife will never know where Jayden came in contact with the often deadly bacteria that inflames the brain's lining. "That's pretty much the answer that we've gotten." Nationwide in 2002, there were 513 cases of streptococcus pneumoniae, the medical term for the type of meningitis with which Jayden was diagnosed, in children under 5, according to a Centers for Disease Control and Prevention report. Many such cases start as ear or chest infections and progress to meningitis if left untreated, said Ryan Pike, developmental director for the Meningitis Foundation of America. About 20 percent of victims die. In New Jersey, 91 cases - in patients of all ages - have been reported so far this year, including 23 in Essex County, where Jayden lives, eight in Passaic County, and six in Bergen County, said Marilyn Riley, a spokeswoman for the state Department of Health and Human Services. "Right now your only option is Prevnar," Pike said, referring to preventive measures. "It's the best available - the most efficient and effective." The Singers camped out at Jayden's bedside around the clock. Friends and relatives brought food, the only meals they bothered to eat. They were inundated with phone calls and cards offering solace. Jayden's room began to resemble a toy store filled with stuffed animals. Perhaps the best gift came in the form of time: 100 sick days donated to Andy by his colleagues at the Passaic County Sheriff's Department, where he is a warrant squad detective. They had collectively contributed hours each had accrued so the 15-year veteran could be with his son. In particular, one officer's words stuck with Andy and Jenny, providing hope when it appeared there was little. "This is the way your hero stories begin," Andy recalled Detective Sgt. Fred Ernst telling him. "They'll be talking about Jayden John Singer at the 2020 Olympics. You've got one in the making." At Clinicians Publishing Group, where Jenny, 33, is an art director, co-workers also have pitched in, organizing a benefit, and arranging for the David Morrish Quartet to perform at the Montclair High School Amphitheater on July 22. The 7 p.m. show is free, although attendees are asked to make a donation or buy a $15 "Jazz For Jayden" T-shirt. In late April, Jayden was discharged from St. Joseph's. He had severe hearing loss, speech and learning disabilities, and partial paralysis of his right side, an aftereffect of the strokes. His body was like a rag doll when doctors at Children's Specialized Hospital in Mountainside began inpatient therapy for Jayden to regain motor skills. The once-bubbly child who walked at 9 months, spoke full sentences at a year, and was potty-trained at 2 became confined to a wheelchair and diapers. After 2½ months in Mountainside, Jayden - the name incorporates both Andy and Jen - is making strides. Words are coming slowly, most often sounding like stuttering mumbles. The brown eyes Jayden inherited from his mother are becoming more alert; the delicate features resembling his dad's are again expressive. "There's nothing you can do about meningitis," said Liz Cort, a physical therapy assistant at Children's Specialized Hospital. "You can have all your shots, be the greatest parent in the world. You can be a doctor. Nothing exempts a child from it." E-mail: camachoa@northjersey .com JULY 14,2004 Today was an interesting day. Jayden looks great. He's smiling alot and almost giggling. We were able to speak to his doctor about the shunt. He says that the films show a considerable amount of fluid, but he will send them out to the neurosurgeon at columbia presbyterian in NY. More test need to be done before they would consider putting in a shunt. We have talked to several people about it and it wouldn't be the worst thing that could happen. It's a lot scarier when it's your own child going through this than just hearing about someone else. Although we're still a bit upset and scared, we'll take this one day at a time. We're a little less uneasy about it. I want to thank my friend, Tom, for all his help. I called him immediately about the shunt procedure. He also explained to me what the report meant about the CAT scan. Too many medical terms for me to understand. Thank you, Tom. You're always there when I need you. You're the best! As you all know, the article came out in the Herald News today. I need to clear up the fact that Jayden is NOT home for good, just on Sundays, right now. The article implied he was home. Also, we do NOT know for sure if the type of meningitis Jayden had was covered by the Prevnar shot. We know for sure the strain (6) may be covered by the shot. If it's 6A or 6B, we don't know. One is covered by the shot the other isn't. So, that part is unclear. Other than that, the article was pretty good. So, when Andy and I had dinner today, we were feeling pretty down with the whole shunt thing. Andy overheard another couple talking and it really brought him back a couple of months ago. We approached them and found out we have a lot in common. Their daughter, Nicole, just came here today from St. Joe's. She didn't have meningitis, but she does have an infection in the brain. Her prognosis wasn't very good at St. Joe's. Just telling them what we have been through helped them so much and gave them hope. Andy and I forgot how bad we were feeling and we felt so good helping these people. We were them 3 months ago. Nicole reminds us alot of how Jayden was and it made us realize how far he's come. I truly believe Nicole will recover well, too. Please pray for her and her family. We will certainly do our best to help them through their difficult time. Thank you again for all the love and prayers. Love to all, Andy, Jenny, and Jayden JULY 15,2004 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 alot 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 contiune 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! JULY 16,2004 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 lorazepam all together (2 days ago), he's really looking awake. Actually, he bearly 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 doens'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 nevers 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 JULY 17,2004 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 peddeling 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 alot 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! JULY 18,2004 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 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 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 JULY 21,2004 Good evening all, Jayden had a nother great day riding his special tricycle, he is really peddeling. 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 escourt! We will not be able to send out updates untill 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 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 sucess. 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 Sherrif'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 everynight sleeping in very difficult conditions, going thorugh 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 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 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 JULY 24,2004 Jayden was feeling a little better today. His face was not as flush and Jenny said he looks good. He is still dealing with some vomiting due to the effects of the anesthesia. This, again, is normal. He is not swallowing as much as he should because of the soreness he has in his throat. The doctors are very pleased with how Jayden is doing. They have even mentioned to Jenny and Andy that is is their own decision if Jayden can return to Mountainside tomorrow. As of right now the plan is to see if Jayden eats breakfast. This, for Jenny and Andy, will decide whether Jayden will return to the Children's Hospital.If not, he will stay another night. Jayden is currently getting his needed fluids and nourishment through IV. I will leave you with this. Jenny said she didn't want to be premature on this but I thought I'd share it. When they would asked Jayden a question, he seemed to be nodding back to them. This is one thing he has not been doing. When Andy finished reading a story to him, they clapped and Jayden joined them. He may already be beginning to improve in his overall recovery. This was the best news today. I hope to have Jenny or Andy resume the updates tomorrow. Not that I did not enjoy it, but it would mean Jay is back in Jersey and will get back on track in his recovery. Thank you and have a good night. "Uncle" Joe JULY 25,2004 Good Morning All. Yes, it's me again. Unfortunately Team Jayden could not leave the hospital yesterday. Jayden still had some vomitting and the doctros would rather see him go 24 hrs without vomitting before he is released. Also they wanted the neurosurgen 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 :) JULY 26,2004 Real quick we are back in NJ at Childrens Specialized Hospital. The surgery went perfect. Jay is doing great. We all are. Thank you so much to everyone at the Passaic County Sheriif's Dept for the transport. Love Andy, Jenny & 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 overdrainage. 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 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 of 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 alot better today and seems in better spirits, but still a little out of it. Jenny & I know tommorow 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 everyone of them, and they mean so much and help so much. Thank you again! We love each and everyone 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 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 JULY 30,2004 Hey everybody please pray, Jay has been vomiting with a fever so we are going out to a local hospital for another CAT scan. He looks pretty good, and this morning said "please please give me" and then babbled. We are not sure what is happening? We are going out for the test now and may end up back in NY Presbyterian depending on the scan. Please pray for Jayden, Jenny & Myself. We really need it right now! We will try to kep you posted. God Bless you all! Love Andy, Jenny & Jayden We are back the CAT scan looks good.The fluid is draining at a good rate, and the brain is looking better. Thank God, and all of you for your prayers. The Dr feels it is just too much for Jay to handle, so Jay will just stay in bed for a couple of days and everything should level out and Jayden will feel better. We just have to go slow. He is just probably feeling very dizzy, and out of balance, and disoriented. Jay is back on IV for fluid and anti-nausea medication for a while. This to shall pass. He is a real trooper and continues to be the strongest person Jenny & I have ever known. Thank you all for your continued prayer and support! Love Andy, Jenny & Jayden Have a good weekend all! JULY 31,2004 Simple day. Jayden just layed 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