AUGUST 1,2004 Hello all, Not a very good day. Jayden has not been able to hold down a good solid meal in a week now. He continues to vomit shortly after every meal. And no one has an answer. Jenny & I are becoming extremely frustrated. We know in our hearts once the doctors figure out what is wrong, we will move forward. We will not rest on monday untill there is an answer, let them test every possible angle but we demand an answer. Jayden looks healthy, although he does not want to smile or laugh much this past week. He holds his saliva in his mouth and does not want to swallow. Does he have a bad taste, does his throat hurt, does it bother his stomach to swallow? Nobody knows. We are doing all we can to keep Jayden comfortable and happy and let him know mom & dad are right here, and everything will be alright. It is tearing us up to watch him suffer. We are still keeping our faith strong, and even trying to laugh when we can. But we will need some serious therapy soon. Our love for Jayden will not let us show any weakness or doubt in front of him, we continue to stay focused on 100% recovery, as long as it takes! We will get through this storm on our journey. We have an amazing team together! And that team is not just Jenny, Jayden & myself. It includes all of you who have done so much, and continue to do so much. And we know we have some amazing angels both here and above watching over us. And as hard as this is we know the man upstairs has a much bigger plan instore, and we trust in that and continue this journey with our heads held up. We know just how strong Jayden is and how much he has overcome already, and he will clear this hurdle too. We are becoming tired these days, but your support, strength, and prayers keep us going. Thank you. This to shall pass. Good night & God bless. Love Andy, Jenny & Jayden AUGUST 2,2004 Hello all, Today was a much better day. Jayden looked more like himself with his beautiful smiles. He ate some bits of his meals today. He had physical therapy and did pretty well considering he's been laying down most of the week. He had his PCM meeting today and they think he'll be here another 3 to 4 weeks and than we will need to work an outpatient schedule. He had an x-ray of his stomach done to check things out. Everything looked fine, except for a lot of gas. He hasn't really eaten in over week, so that doesn't come as a shock. Tomorrow his neurosurgeon will be contacted and he'll decide if he wants to see Jayden back at Columbia to check everything out. Even though he has had a good day, we still want to know why he has been ill and won't let up 'til we get some answers. We were able to see some of the concert on DVD today. Thanks to all who helped put it all together. We're sorry we missed it. Love and blessings to all, Andy, Jenny, and Jayden AUGUST 3,2004 Good evening, Today was a better day. Even though we must realize everyday is a great day, and are very thankful for each day.Jayden got back into his routine again. His eating is getting better, we should be back on track in a couple of days. He is still on the IV, getting it at night only now to keep him hydrated, untill he starts drinking more liquids. Something is still slighty bothering him, but he his getting back on track. And most important we are seeing more and more of his beautiful smiles and laughs. His physical therapist(girlfriend) Laura took it easy on him today to get him back into the swing of things, but tomorrow she will get right back into the tough stuff, standing, riding the tricycle, and walking with assistance which Jay was trying to do today when Laura stood him up. We are seeing that Jayden is becoming frustrated about things, which is a good sign in a way. It means he is more aware and wants to do things and can't figure out why he can't, or why we don't understatnd him. But he is trying again and we are thrilled. We are moving up the mountain on our journey again. Another obstacle almost behind us. We will take on whatever comes our way, because we have a great team, Jenny, Jayden & myself. And of course with all of your prayer and support there is nothing we cannot overcome. It was nice today to be back into our daily routine of therapies, getting out of this room and seeing all of Jay's therapist and all the great people here at Children's Specialized Hospital. We also had a very nice visit from Nelson Morales from the Passaic County Sheriff's Dept and another Officer from the Mahwah Police Dept. who heard of Jayden's story and gave us a very generous donation from their PBA. We thank all my brothers & sisters at the Mahwah PD. Everyday Jenny, Jayden & I are so deeply touched by so many beautiful people who do so much, from beautiful emails, letters, Mass cards, phone calls, donations, visits, support & prayer in so many ways I can't even begin to tell you, or even begin to thank you. People are beautiful! Believe me when I say that. We cannot wait till we begin to go home and start getting out with Jayden so he can begin to meet all of the beautiful people who have touched his life. And we can begin to thank you all! Thank you for your continued prayer & support. You all have really made a difference! Love Andy, Jenny & Jayden AUGUST 4,2004 Jayden did great today. He seems like he's feeling better. He had a great breakfast and lunch. He seemed tired by dinner time. He had a full day of therapy, with an hour of physical therapy. He rode the tricycle better than ever. He was pedaling and steering. He was much more himself, with some wonderful smiles. The IV has been taken out, so it's up to us to continue his liquid intake. Hopefully, we will continue on this path. We hope to be able to spend some quality time at home with him this weekend. Please continue to pray. Love and blessings to all, Andy, Jenny, and Jayden AUGUST 5,2004 Hello all, I need a favor from somebody from the Sheriff's Dept. I need a ticket book because Jayden was speeding through the hallways on the tricycle today! Well ok not really speeding, but he sure was peddleing along at a good pace for a short time. He was giving it his all, he is still working on his steering a few innocent pedestrians were struck along the way. A small price to pay for glory! Jayden had a really good day today, he ate very well, is beginning to use his right hand again, and is really focused on things again. He is once again trying to talk, we are hearing many sounds again. When Jay hears music he taps both of his feet, he is moving his right side so much more now. Jenny & I can see the twinkle is back in his eyes again and he is giving it 110%. This has certainly lifted our spirits again. It was a difficult 2 weeks we just endured, but we always had faith Jayden would come through this just as he always does. Nothing can stop him! Super Jayden my hero! Thank you all again for your continued prayer and support. Good night and God bless! Love Andy, Jenny & Jayden Check out photos from the concert at http://jazzforjayden.com/photos.html Thanx again to Dave Morrish & band, John, Katherine,Sharee,Martha,Pat Murray,PCSD Mounted and everyone who helped and supported the event. Thank you Ariel for the beautiful song.Thank you to uncle Joe, you did well under pressure. Thank you to all. thankyou thankyou thankyou thankyou AUGUST 6,2004 Jayden did fantastic today. He was walking, assisted, or should I say jogging. He was on a roll today. It was probably the best walking he's done yet. He'll probably be able to try a walker at this rate. He was able to go back into the pool. He did great. He really enjoyed it. He ate well for all his meals and has started to drink his health shakes again as well as the ensure puddings. We will be taking him home tomorrow for the day, god-willing. Have a great night. Love and blessings, Andy, Jenny, and Jayden AUGUST 7,2004 Hello all, A super saturday at home! We just had a great day spending some quality time together. Jay really enjoyed playing with some of his toys, he actually seemed focused and playing with them. We cannot wait to get back home tomorrow for the day again. He is once again trying to speak, he is making more and more sounds. Have a great weekend. Happy birthday to mom!(andy's) Love Andy, Jenny & Jayden AUGUST 8,2004 We had a fantastic day at home. It's so hard to bring him back to the hospital. Jayden smiled practically all day. He's ready to come home. I've never felt it stronger than now. Andy agrees. He'll have the best therapy at home, lots of love, good food, and kisses. Of course, we'll follow through on the harder stuff they do here in therapy, as well. Hope you all had a great weekend. We had the best! Love and blessings, Andy, Jenny, and Jayden AUGUST 9,2004 Howdy yall, We are climbing that mountain at a very good pace again, making great strides on our journey. Jayden is back on track and doing a super job. He was riding the tricycle at a fast pace today, and loving it. He did some great assisted walking. He was using his right hand today so much. He was actually passing objects from one hand to the other. He is focusing on toys and beginning to play with them with meaning, and not just throwing them. He is trying to speak so much, more and more sounds every hour. It will hopefully all come together soon. Jayden's attitude has been amazing since going home on saturday & sunday for the days. He is just non stop smiles and giggles, he is so happy and enjoying close contact, like kissing, and cuddling, and hugging. I just held Jay today for the longest time as he hugged me and rubbed my back. It has been over 4 months since I have had one of those super hugs. It was a great day! Jenny & I are thrilled with the progress we are making again. The miracle workers here at Childrens's Hospital are once again pushing Jayden to get him back. And he is giving 110% It is really awesome to watch! Thank you all once again, for it is because of all your support & prayers we have made it this far and will continue up this mountain. Thank you! We cannot wait to see what miracles we will see tomorrow. Good night & God bless. Love Andy, Jenny & Jayden AUGUST 10,2004 Jayden had a great day. It was very busy with bike riding, walking, playing, and the pool. He did great. He's been looking more and more like himself. We just want to keep moving forward. Please add Jena into your prayers. We met her and her wonderful family here and she needs surgery. She is a very special little girl and we absolutely love her parents. Love and blessings to all, Andy, Jenny, and Jayden AUGUST 11,2004 Hello all, A good day here. Jayden was acting a little different today, but we guess in a good way. He was on the quiet side and not getting frustrated, he was very mellow but very focused on things and even following some directions when he was asked to do things. This may be leading into another phase of recovery. We still have some issues with Jay such as he gets little bouts of loss of balance that last a second or so and Jayden falls forward. Jenny & I spoke with the Dr. who feels this will pass within 3 to 6 months as the shunt does its job. We will have to be more aware of these as Jay begins to walk because they can cause him to fall. Other wise Jayden seems very happy and full of smiles. He is really back on track and doing a super job! I would like to thank Matt Lukesh for the awesome tattoo I got last night. It is Jayden's name written in veins, which represents that with every beat of my heart Jayden flows through me. Thanks to Matt & his mom for all her support, Billy Monroe and everyone at Screamin Ink Tattoo http://www.screaminink.com/ for your support. I'll be back for more! Thank you to everyone everywhere for all your amazing support. It it still unbelieveable how everyday we recive such incredible support from so many beautiful people. Jenny, Jayden & myself whould not of made it this far without all of your continued prayer & support! Thank you! Good night and God bless. Love Andy, Jenny & Super Jayden AUGUST 12,2004 well, we have a tentative date given to us for jayden's discharge, sept. 1st. if he shows major improvement though, they'll want to keep him longer. we'll see. he's doing fantastic. he's so happy and smiley. we can't wait to take him home this weekend. he's been much more focused on objects and on what he's doing. we're so proud of him. he rode his bike even better today than ever. he was a speed demon. he amazes us everyday. all the best to you all. love & blessings, Andy, Jenny, and Jayden AUGUST 13,2004 Good evening all, Another good day. Jayden is continuing to ride the tricycle with more strength every day. He is trying very hard to walk, he is taking good weight to his feet and working on getting the stepping down. Jay did some super standing in the pool, pushing himself up and holding himself up. He some new sounds out of his mouth today. All the pieces of the puzzle are there, Jayden is trying very hard to put them together. But Jenny & I know that with Jay's determination, the assistance of the great therapist, the support and prayers from you all, and mom & dads help, we have faith he will get it all together soon. His brain has to work it all out, and when Jay is ready it will happen. We are looking forward to this weekend to take Jay home for the day on saturday & sunday. We know how much improvement we see in Jayden when he goes home. it definatley triggers something within him. Hope you all enjoy your weekend. Good night & God bless. Love Andy, Jenny & Jayden AUGUST 15,2004 What a great weekend! It was so nice just to be home for the day on saturday & sunday. Jayden is so happy when is just laying in his own bed. We are looking forward to going home september 1st. Jenny & I know it will be a lot of hard work and adjusting, but being home is going to be the best therapy for Jay. It is just so comfortable for the three of us just to be together in our home, there really is no place like home ( I say that clicking my heels, red pumps actually) It seems Jayden has entered another phase of recovery, he is very mellow and concentrated, taking it all in. Very little bothers him now. But every now and then he really just says things, that seem to make sense to him, he is so close to talking. We are not sure when it will happen, but it will happen!. We cannot wait to get back into therapies tomorrow and see what miracles Jayden will perform this week. So stay tuned! Thank you all for your continued prayer & support. Never forget how big a part of this journey you all are! Thank you. Good night & God bless. Love Andy, Jenny & Jayden AUGUST 16,2004 jayden is looking great. he's doing well with his therapies. he kept andy up last night with lots of sounds. andy thought he was going to speak. he's so close. he was also very active in bed, flipping his legs over the bars. he is something else. i feel he'll speak soon. can't wait to hear his cute little voice, with his funny comments. have a great night. thanks for the prayers. keep them coming. love & blessings, andy, jenny, and jayden AUGUST 17,2004 This journey definatley does not have a smooth road. Jayden is doing well, but he is suffering from a little falling forward imbalance thing he has had. They started out very small, and very few. Now he is having them very frequently, sometimes minutes apart and they have become a hazard for Jay. He falls forward with such force and his arms and legs flail. He has hit his face on things, and affecting his attempts at walking. The doctors are unsure what it is and at first were not concerened, they said it would pass. But now it has become a problem, there will some tests done over the next few days, and a meeting with a specialist. They could be a form of seizures, or muscle twitches, or just something simple that will hopefully pass. But we will stand strong over the next few days untill we have some sort of answer. Mentally & physically Jenny & I are both drained, but we continue to show noting but strength and love in front of Jayden, and let him know we are here and it will be OK. he had a tough day even with the imbalances he did some good assisted walking and tricycle riding. He did not smile much or look to good today, but just when Jen & I were at our ends Jayden perked up and began to smile and giggle for us, and he has been in a great mood since. He knows when to cheer us up too, we are a pretty great team! Well I'm just gonna crawl in bed next to Jay now and watch Monsters Inc. Good night & God bless. Love Andy, Jenny & Jayden AUGUST 18,2004 Well, Jayden has been scheduled for an EEG on Friday. God-willing the EEG will not show any seizure activity. It could possibly be related to fluid build-up in his inner ear. Either way, we will have every avenue checked out and get some answers, hopefully. We were able to take Jayden out to dinner with us. He really enjoyed being out. We hope we will be going home in 2 weeks. So far, the date is still Sept. 2nd. Please pray that Jayden's EEG goes well and that we find out what's causing these imbalances. Love & blessings, Andy, Jenny, and Jayden AUGUST 19,2004 Good evening all, We had a good day today, Jay started out kind of sluggish and zoned out but as the day went on he perked up and did good. He was fitted for plastic casts for his ankles today, they will assist Jay with keeping his ankles supported while he is is trying to learn to walk again. We should have them in about 2 weeks. Jayden still had his falling forward episodes today. Jenny & I are looking forward to hopefully finding out something with the tests tomorrow. The episodes seem to be bothering Jayden now, and upsetting Jen & I. Jayden still continues onward though, the true champion that he is. We are so proud of him with all he has been through and continues to endure, he is still full of beautiful smiles and giggles. And just looking into his eyes reasures us that everything is going to alright. Please pray for us tomorrow as we go for another test to find out what is going on. And please pray for all those in need of prayer. Thank you so much for your continued prayer and support. Love Andy, Jenny & Jayden AUGUST 20,2004 Jayden had his EEG today and it showed myoclonic seizures. This is the definition of it: Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" (KLOH-nus) means rapidly alternating contraction and relaxation, jerking or twitching, of a muscle. So, his Dr. has upped his phenobarb to 75mg from 60mg and added .5mg of Clonazepam (3 times a day). It's takes about 24 hours to see a difference. The Dr. says that this is not uncommon, especially with scar tissue on the effected area. He is still healing and he can out grow this. This is not necessarily a life-long problem. We pray it goes away and never comes back. Dr. Y says he'll need to be on seizure meds for 1, possibly 2 years. If he remains seizure-free after that, then he's in good shape. So, although we are disappointed, we have an explanation and can work towards helping him. Besides that, Jayden was in great spirits, smiling, laughing, and trying to talk. He also sat up on his own during the EEG. Go figure. He amazes us all the time. He truly is an inspiration and the most incredible son a mother could have. I am truly blessed to have him as my son and I thank God that he has allowed him to stay with us. I just hope I can be half the mother to him, as the incredible son he has been to me. Tomorrow we will go home, but we will see the neurologist at this hospital first. Hopefully, Jayden will continue to progress and move forward and these episodes pass. I have so much faith in him and although it is very easy to fall apart, Jayden needs us to be strong and fight along with him. That is what Andy and I intend to do, always. Love & blessings, Andy, Jenny, and Jayden AUGUST 21,2004 Howdy yall, It was a tough day, but we are happy & thankful to have these days. Jayden started his new anti-seizure meds yesterday, and they upped the one he was on. So he was out of it today, very doped up with very little muscle control. Jayden also suffered from hicupps on and off all day today, we will try and find out what is causing that? It was nice just to be home for the day though. Jayden still had some of the seizures today but they are less, and hopefully will soon diminish. This too shall pass. I have said that many times for different bumps in the road and we always get through them. Jenny & I always stand strong in our faith and know in our hearts Jayden will just fine. And with Jay's strength and determination that he has every day he will be just fine. As long as it takes we continue this journey with our heads held up high, our hearts full of love, and our faith always strong. Jenny, Jayden and I will be victorious! And of course your continued prayer & support plays a huge part in all this. Thank you! Good night & God bless. Love Andy, Jenny & Jayden AUGUST 22,2004 The road to recovery gets bumpier and bumpier. We saw the neurologist today and he says that everything we have described about Jayden and from what he saw, himself, is typical myoclonic seizures. But, his EEG show focal seizures, which are different. So, since the clonazepam hasn't stopped the seizures and has made Jayden extremely groggy and really out of it, they have stopped it. Jayden was definitely not himself today. He looked so tired, with no strength. Now, they need a more thorough reading of the EEG and possibly a 24 hour EEG and video to record Jayden. It would probably be an overnight stay at a local hospital here. Tomorrow we will stop at nothing to get answers. No more trying of different meds until an accurate assessment has been made. Once they know exactly what seizures Jayden is having than a course of medicine can be administered. There is a difference between myoclonic and focal in terms of medicine. It's killing us to see Jayden go through even more. This medicine they stopped today has not helped Jayden at all. As we are tested some more, I can't help but wonder why. We just want Jayden to get well and live the wonderful life he deserves. This experience is taking years off our lives. But it's worth it once we see Jayden healthy, happy and very much enjoying life. Please pray for him and for the doctors to have the knowledge to resolve this. Andy and I are really struggling to keep our chins up these days. Happy Birthday, Joe! We love you. Jayden loves his god-daddy / uncle very much! I hope your day was great. Love & blessings, Andy, Jenny, and Jayden AUGUST 23,2004 Happy Birthday to me! Although this is not the way I would have liked to spend my 35th birthday, I cannot complain or ask for anymore. When I made my wish today I realized that I am very fortunate, I have an amazing family, the most supportive friends, a beautiful home, a great job with co-workers that are like family, a wife that is beautiful, strong, funny, loving and a great friend, and most of all a son that has accomplished so much in his life so far, a son that makes me so proud of him everyday, a son that has touched so many lives, a son that is the most incredible person I have ever know, a son that continues to smile throughout this journey, a son that is my hero! What more could I ask for in a birthday wish? Jayden started new anti seizure meds today, they are sure now his seizures are general and not myoclonic. So he will be treated with depakote and his phenobarb is back down to his regular level. He has perked up tonight, after sleeping most of the day and being very dopey. It will take some time to get it all straightend out, but Jenny & I will take as long as it takes to get everything right. We will not be going home september 1st, it will be postponed untill they get everything straight. It was nice to see family and friends today. Thanks for my cake Deb, it was great! Thanks to all of you for your continued prayer & support. Love Andy, Jenny & Jayden A Father’s Prayer by General Douglas MacArthur 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, And humble, and gentle in victory. Build me a son whose wishes will not take the place of deeds; A son who will know Thee – and that to know himself is the foundation stone of knowledge. Lead him, I pray, not in the path of ease and comfort, but under 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 that 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 other men, one who will reach into the future, yet never forget the past. And after all these things are his, add, I pray, enough of a sense of humor, so 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, and the meekness of true strength. Then I, his father, will dare to whisper, "I have not lived in vain." ( This reflection was written by General MacArthur, during his early days in the Phillipines during the Pacific War, and was left as a spiritual legacy to his son Arthur. Made public after the general’s death in 1964.) AUGUST 24,2004 Jayden was much more alert today. Thank God, the new medicine isn't drugging him up. He was feeling better today and so were we. He had his therapies today and he seems to be back on track. He's amazing. Although he is still getting those episodes, the doctor has told us to give it a week to work through his system. He needs to build up his levels first. The hospital had a carnival today and Jayden really enjoyed people watching and hearing the music. We had a really good time with him. I want to thank some special friends that we met when we were at St. Joe's, Bill and Michelle. Thank you for the awesome basket of goodies you sent for Jayden. We can't wait until Jayden is playing with Nicholas. All our love always to you and your family. I also wanted to wish Andy a happy anniversary. We have 2 anniversaries, but this one is the most special one of all. Andy is an incredible person with a heart of gold. I am truly blessed to be married to a wonderful man, a devoted father, and my best friend. I am grateful for everday I spend with him. Thanks as always for the continued prayers. Please add my brother, Joe, to your list of prayers. He had surgery today and it went very well, but he is in a lot of pain. I wish I was able to be there for him. He knows I'm there in spirit and his in heart. Love & blessings, Andy, Jenny, and Jayden AUGUST 25,2004 A very progressive day! Super Jayden is right back on track, doing some great little things today. he was picking out objects when asked from 2 or more choices. He said hat today while playing with my hat. He did some great assisted standing and some good tricycle riding. He was full of smiles & giggles and was in great spirits all day today. He is once again trying so hard to communicate with us. It is all right there. Jayden will put it all together soon! Jenny & I are feeling wonderful to see Jayden in such a great mood. We all had a beautiful day today. Stay tuned the journey continues upward and onward! Good night & God bless. Love Andy, Jenny & Super Jayden P.S. Welcome home to Jenny's brother Joe who underwent surgery(not the sex change yet) and is recovering with some pain(no not his wife) but is going to be just fine. We wish we could be there for you, you have been there so much for us we love you and thank you. See ya soon. AUGUST 26,2004 Jayden is doing good. He did well with therapies. His doctor has upped the depokane to 100mg and has lowered the phenobarb to 30mg from 45 last night. The goal is to get him off the phenobarb totally and keep him on the depokane at 125mg 3 times a day. He still gets the episodes, but the frequency has lowered. We hope that this new medicine stops these seizures for good. Thanks as always for the support and prayers. Love & blessings, Andy, Jenny, and Jayden AUGUST 27,2004 Jayden is a back at it again. Taking on the day with the most amazing determination and strength. He is so full of life, and gives us such joy. What more can I say for today. Good night and God bless. love Andy, Jenny & Jayden AUGUST 28,2004 We took Jayden home today. He was very vocal and excited to be in his room. He's not feeling too good today. He has no appetite and his stomach was sick. Hopefully, it's just a bug going around the hospital, which we heard about. I just want my little boy to be well and stay well. Just wanted to wish my good friends George and Debbie congrats on their wedding today. We're sorry we couldn't be there. Love you both. Have a great night. Love & blessings, Andy, Jenny, and Jayden AUGUST 29,2004 Good evening to all, Its sunday night and we are back at the hospital after a very nice day at home. It seems there was a stomach virus going around here so that may be why Jayden got sick yesterday. But he was in very good spirits and enjoyed being home again. Jay really lights up when he is in his room, he looks all over the place and mumbles little things. You can tell its making him think very hard, and he is so focused. There is alot going on in his head, he is putting all the peices of the puzzle together, and doing a super job at it. We once again look forward to getting back to therapies tomorrow and watching Jayden do his magic. Good night and God bless. Love Andy, Jenny & Jayden For those who have been asking you can read all the updates at http://meningitis-angels.org/Jayden's%20Journal%20to%20Recovery.htm And for Meningitis info please goto http://meningitis-angels.org Thanks Frankie! Also check out www.jazzforjayden.com Thanks Martha! AUGUST 30,2004 We had a good day. We had our patient care meeting today. Jayden has met most of his therapy goals, mainly physical. We have been given a discharge date of September 8th, next Wednesday. We'll be coming here as outpatient and it seems we may be able to keep most of the same therapists. We're really happy about that. They're wonderful. Although the seizures, haven't totally diminished, blood was drawn today to check his levels for the depakote. It may need to be increased or just left the same. Jayden has been extremely vocal and happy. He looks great. We hope to take him home this weekend for the night as our trial run. It would be the perfect birthday gift for me. Andy had father's day and hopefully Jayden will give me the best present by being home for the whole day and night. Have a great night! Love & blessings, Andy, Jenny, and Jayden AUGUST 31,2004 Hoody yall, The roller coaster continues. Jayden had a good day yesterday only to begin vomiting late last night, and then again this morning. And just when Jenny & I were about loose our minds(again) Jay perked up and had another great day. Today all Jay wanted to do was sit up on his own from the laying down position. He was trying yesterday and was doing it with little assistance, but today thats all he wanted to do, sit up and lay back down and sit up again. He is getting some strong ab muscles. After being very quiet and out of it this morning Jayden became very focused on things and exploring everything within his reach, touching and moving, and feeling. And once again he very, very vocal with every possible sound coming out of his mouth. He wants to talk so bad. They did an EEG today to check his brain waves today we will get the results tommorow. But today we got the results from yesterdays blood tests, his depakote levels(new seizure med) is 49, it should be between 50 & 100 so we will find out if they will increase or give it some more time to level up.. Jayden sure keeps us on our toes. Everyday is an adventure. But Jenny, Jayden & I take on every obstacle that comes our way. We knew this journey would be bumpy, but we can't wait until the road becomes a little smoother. We once again thank all of you for helping us through this. We thank you for your continued prayer & support. Good night & God bless. Love Andy, Jenny & Jayden Please pray for all those in need of prayer. SEPTEMBER 1,2004 Today was an incredible day for Jayden. He did the best he has ever done with therapies. He was vocal in speech and was imitating sounds and facial expressions. He has extremely vocal all day. He sat in OT for 20 minutes WITHOUT assistance while playing. He rode the tricycle today better than ever, pedaling all by himself. He was on a role today. We were so shocked of how well he did in all his therapies. He sitting up on his own in bed for a couple of seconds. He's building up his strength everyday. The EEG showed fewer seizures so the neurologist has upped his depakote another 125mg a day. So now he gets 250mg in the morning and at night. He looks fantastic, smiling with every accomplishment. We're truly lucky! Please continue to pray for all the sick children here. We have met some great parents here who are going through so much. I want to congratulate Joanne Melore who had a baby girl yesterday. I'm sure she's beautiful. All the best to the Melore family. I know Jayden misses his buddy Lorenzo. Love & blessings, Andy, Jenny, and Jayden SEPTEMBER 2,2004 So how was your day? Ok heres mine. Woke up late, driving to the hospiatl crashed into the back of mini van, the woman was ok and a real sweetheart. I crushed the back of her van and she is praying for Jayden and our family. I will spend tomorrow night fixing my truck the best I can. I get to hospital and Jenny tells me how good Jay is doing so far but really doesn't want to eat or drink anything. I try for over na hour to feed him lunch with little success. We take him outside to ride the tricycle so he pedal anywhere, he pedals like lance Armstrong all over the parking lot downhill and with amazing strength uphill. We come back inside and I give him a little pudding, but still no liquids. We sit outside for a while and Jay was very vocal with sounds and mumbles, then his speech therapist came outside for therapy and Jayden as usual became less vocal. But he is very interested in everything around him, very exploritory. he then fell asleep right before dinner, when he woke up he did want to eat or drink anything. I tried everything I could find. After an hour he finally took a couple of sips of juice and then threw up all over me. I then bathed him got him back in bed and it was med time. He took his meds with applesauce and held it in his mouth fo 20 minutes and then finally spit it in my face. So one of the nuses came in held Jayden down while I got Jay to drink the meds mixed in juice. 5 minutes later the resident doctor came in and wanted to look a Jayden's throat to see if it was infected and thats why he did not want to eat, well his throat is infected but the tounge depresser made Jayden throw up his meds on me again. We waited 30 minutes and another nurse came in held jayden down and for the 3rd time I forced his meds in his mouth and he swallowed them. He is now resting in bed watching Finding Nemo with a big smile and sitting up on his own. After the day(and past 5 months) I have had I should be a nice padded room, but looking at this beautiful child who has endured so much more than I ever will, he still continues forward everyday through all tough times, and most important he does it with a smile. Not just a smile but a smile that recharges my heart, strength and faith. I am so proud of him, my hero Super Jayden! He is my inspiration and reminds me what is important and how beautiful life really is. We all have rough days, but remember how lucky we are to have everyday. Enjoy each day, enjoy life, enjoy everything you can. Remember what is important. Don't sweat the little stuff. And always try and laugh a little each day, there is humor in almost everything. laughter is the best medicine, I always thank my dad (My other hero) for teaching me that. And I thank Jenny & Jayden for laughing with me or at me. Good night & God bless you all. Thank you for your continued prayer & support. Love Andy, Jenny & Jayden SEPTEMBER 3,2004 As the rollercoaster ride continues, Jayden had some more vomiting issues today. Blood was drawn to check his liver, any infection, and hydration. Thank God the liver tests are normal, he is very sightly higher in white blood cells and very slightly below normal in hydration. We will continue with the liquids and get him to eat what we can. No fever and his vitals are good. It could be a virus in his system. It could be due to all the active movements he makes with sitting up and laying down several times in a row causing him to feel dizzy or fluid draining a little too quickly, like they suspected weeks ago. But no definite answers. That seems to be the pattern with every new bump in the road. We don't know. Unfortunately, they want to keep an eye on him tomorrow, so going home is NOT an option, at least not for Saturday. Maybe Sunday, if he's feeling better. We're still scheduled to go home on Wednesday, but until we feel he's better with all this, we'll postpone it if we need to. Other than that, Jayden is still smiling like a champ. He's very vocal and has a great attitude despite what he's going through. We can certainly learn a lot from his example. Have a great holiday weekend. As long as I have Jayden and Andy, it'll be a great weekend for me as well. Love & blessings, Andy, Jenny, and Jayden SEPTEMBER 4,2004 HAPPY BIRTHDAY Jayden would like to wish his mom, the best mom, the most dedicated mom, the most loving, caring, sweetest, best hugs & kisses giving mom in the world a very special birthday. And he would like to thank her for being so strong and standing by him everyday with nothing but love and hope in her eyes. And looking into her eyes everyday gives him the strength and ecouragement and just lets him know everything is OK. Love Jayden SEPTEMBER 5,2004 Life is good! We are home for the night as a family for the first time in 5 months. Jay is doing great. We will return to the hospital monday evening and if all goes well we will come home for good on wednesday. There is no place like home, there is no place like home. Love Andy, Jenny & Jayden SEPTEMBER 6,2004 We had a great 2 days home and cannot wait to home for good on wednesday. Jenny & I know from these past 2 days Jayden will progress so much more once he is home for good. We cannot wait. I much as I will miss this most uncomfortable cot in the world, it will be nice to sleep in my own bed everynight. I will miss this computer here which has felt my flowing happy typing on good days, and pounding of its keys on angry tough days, it has also survied some tears running down into it. I will miss the families and children Jenny & I have met here, we have shared so much and supported each other so much. We have seen so much on this journey, I am greatful for all that I have experienced so far. I have learned so much, and have a whole new outlook on life. As we close this chapter and move on to another as we go home, this journey contiues. Thank you to all of you for helping us this far, you have been an important part in all of this. Stay tuned for more adventures from Super Jayden! Good night and God bless. Love Andy, Jenny & Jayden You can read it all from the begiing at http://meningitis-angels.org/Jayden's%20Journal%20to%20Recovery.htm I do just to remind us how far we have come, and that there are miracles if you have the faith. SEPTEMBER 7,2004 We just found out channel 2 CBS NY is coming here right now to do a story on us. We don't know if it will air tonight so keep an eye out for it. Love ya all Andy, Jenny & Jayden Somebody please tape it if it is on, I will not be home untill late tonight thanx well, this is our last night here. can't believe we've been here over 4 months. although this ride is not over, we can't wait to have jayden home. what a difference 1 night home had on him. he did great in therapy today. he was vocal in speech, for the first time with his speech therapist. in ot, his therapist, renee, held his hands he stood himself up and took steps. we couldn't believe it. he also stood in pool with little assistance. it's as though he knows he going home. not to mention being interviewed by arthur, from CBS. jayden is a celebrity! as hard as it has been to be here, this place has been incredible. the therapists, the nurses, doctors, and all the other employees here have been great. we'll probably be coming 3 times a week for outpatient, plus andy and i will do our own therapies at home with him. we will continue to send updates, but probably not everyday, unless awesome things keep happening, than we'll have to share it all with you. thanks you for your prayers and support. now that we'll be home, we'll probably need you all even more. so many people have offered to help us out along the way and we haven't taken you up on it, but we'll definitely need you when we're home. thanks for reading our updates everyday and for listening when we've called out for help. i especially want to thank my parents who came everyday to the hospital. we couldn't have done this without you. you have always been the greatest example of loving, caring, respectful parents. we love you all. we can't wait to see you at the spaghetti dinner. jayden has a lot of love around him and when he can personally thank you, the huge celebration and bash will happen. love & blessings, andy, jenny, and jayden SEPTEMBER 8,2004 Jayden video jaydenmiracleboy@yahoo.com recommends watching a video from http://www.cbsnewyork.com To see the video for yourself go to: http://wcbs.dayport.com/launcher/12301/?tf=video_player.tpl&Category_ID=48 Or goto http://cbsnewyork.com/homepage/ scroll down and look for CBS 2 Video and the story A child comes home after beating deadly menengitis, Arthur Chi'en reports. WE ARE COMING HOME TODAY YIPEE!!!!!!!!!!!!!!!!!!!!!!!!!!!! This update is coming from HOME! We are all home and soon be snug in our own beds. AHHHHHHHHHHHHHHH That was a giant sigh of relief. We still have a long road ahead but today we reached a giant goal. Jayden is sitting up in his room and sliding his butt to get around. He just looks at everything and smiles. He is so happy to be home. And so are Jenny & I. As nice as it is to be home we will miss all the staff at Childrens Specialized hospital, they are the most professional, caring, miracle workers we have ever met. We will miss the other families whom we have been through so much with. And we will miss the children whose amazing spirt and drive have truly inspired us. We will be going back 3 times a week for therapy, a couple of hours a day but we all get to sleep in our own beds and enjoy time in our home. Thank you all for your continued prayer & support, you have helped get us home! Thank you. Good night and God bless. Love Andy, Jenny & Jayden SEPTEMBER 9,2004 Jayden is definatley enjoying being home. He is eating great, smiling & laughing, playing with his toys in his room, and learning how to get across the floor to different toys by sliding himself. There really is no place like home. Jenny & I are getting into a routine and it will take a few days to get it right, but as long as we are here together nothing can stop us now. Good night and God bless. Love Andy, Jenny & Jayden SEPTEMBER 11,2004 Its been a tough past 2 days, Jayden was having frequent and strong seizures yesterday so we took him to St. Joes Hospital in Paterson to see the Neurologist he saw when he was there in April. We saw another Dr. who wanted to up Jay's depakote and add Ativant again. We gave the ativant to Jay last night wich was supposed to calm him down, but he was wired and up untill almost 4am. He was wiped out today and tired and still having frequent seizures, a little less than yesterday. We have to give the increased depakote time to work. Jenny & I hope we can find a solution soon. The seizures are getting stronger and stop Jay from breathing for a few seconds, and when he recovers he is exhausted and scared. It is not getting any easier to watch. He is still a trooper, playing on the floor, scooting across on his butt, and now turning around in different directions. He was very quiet today, no sounds? Well it is still great to be home, it is alot of work everything we must do, but we are very thankful that we can do it. Please remeber how important life is, and how important those close to you are. Enjoy everyday, always! Please pray for those who were lost on this day 9/11/01 and there families. Life is precious. Good night and God bless. Love Andy, Jenny & Jayden SEPTEMBER 13,2004 Had a good day with Jayden. Tomorrow we start out-patient therapy. Jayden will also see his doctor there. Another EEG will be scheduled to check his seizure activity. He gets them quite strong and very often lately. We may need to add another medication. Blood will also be drawn to check his depakote level. He looks great, despite the seizures. The road continues to be bumpy, but we move forward. love & blessings, Andy, Jenny, & Jayden SEPTEMBER 14,2004 Hello all, Real quick Jay is doing good, we had our first day of outpatient therapy and it went well. Jayden is still having the seizures and they are still very strong and frequent so Jenny & I need answers, we cannot stand to watch Jayden go through them anymore, they are stopping his breathing for a few seconds and when he recovers he is exhausted. So tomorrow morning we will head out to Columbia Presbyterian in NY, where hopefully we can get some more answers. They will probably want to do a bunch of tests or even admit Jay for observation, whatever it takes to get to the bottom of this we will do for Jayden. Wish us luck and pray. Thank you. Good night and God bless. Love Andy, Jenny & Jay. Thanks for the talk this morning Figel SEPTEMBER 15,2004 we went to columbia today and jayden's neurosurgeon was pleased to see jayden doing well with the shunt. he witnessed one of jayden's seizures and was very concerned. although, oddly enough, jayden being able to have these seizures tells him that the shunt is working properly. he says that the brain is not under the pressures it was under and now the brain can function more normally and can heal. although seizures aren't a good thing, he's happy to see the shunt working properly. sounds strange, huh? anyway, we have scheduled an appointment with a specialist in epilepsy disorders. she initially had no appointments available 'til november. i explained jayden's situation and she has fit us in for this friday at 10:00am. according to the neurosurgeon, she is the best. so hopefully, she can determine the right path we need to take for jayden. i'm hoping she can work some magic. other than that, jayden looks great and has the most awesome smile which lights up our hearts. we're looking forward to the dinner on friday, which by the way, is very casual attire, jeans, khakis, etc. i've heard there are some incredible items being raffled off. hope to see you there. please say a quick prayer for the family who lost their 13 year-old son to meningitis in monmouth county. i can't imagine the pain they are all in at this time. god bless them. love & blessings to all, andy, jenny, & jayden SEPTEMBER 18,2004 Oh what a night! Last nights dinner for Jayden was amazing! Jenny & I are still pinching ourselves. Thank you to everyone who worked so hard to put it all together. Thank you to Paul Sconciafurno for a hilarious job of announcing everything. Thank you to everyone for the great prizes raffled off. Thank you to everyone who worked so hard in the kitchen. Thank you to eveyone for your kind words of stength and ecouragement. Thank you for your hugs. Thank you to Doug Laverty for donating the 50/50 to Jayden. Thank you all for taking the meninigitis-angels.org brochures and informing yourselves. Thank you for a perfect night! We all had a super great time, Jayden was laughing and smiling all night. Thank you for a room full of love for our Jayden, that was probably the best therapy he has had yet. Thank you again April, Shirley, Lynn, Cindy, Edie, Kenya, Ariel, and all my girls who worked so hard last night, you should be very proud of a perfect night you put together. We once again wish to thank everyone involved & for your support! Jenny, Jayden & I are truly blessed to have people like all of you in our lives. Love Andy, Jenny & Jayden still smiling from last night! THANK YOU WE LOVE YOU ALL! SEPTEMBER 20,2004 Just a quick update on Jayden. He's doing fine. He's a little better in the seizure area. He's still getting them but the frequency has gone done some. Jayden started Keppra on Saturday. Today he seems a bit drowsy, which is expected with this medicine. Tomorrow he goes back for therapy. Hopefully, he'll do well. He seems a bit weaker with this med. We need to give it a chance to build in his system to see some results. Hopefully this med along with the depakote will stop these seizures for good. Next week we are scheduled to go to Columbia for his 48 hour video EEG. We pray we can control this so he can progress. This is really holding him back. He still smiles and makes us proud. Love & blessings, Andy, Jenny, & Jayden SEPTEMBER 22,2004 Howdy yall, Well today has been 2 weeks since we are home from living in hospitals for 5 months. Jenny & I are still slowly getting adjusted to it. It is alot more work than we expected but there is nothing home again with Jay. Just as Jayden is learning everyday, so are Jenny & I. Jay is doing better on the new meds, he is getting less seizures and he was a little less dopey today, although we upped the meds a little today and will over the next few days. We would rather have Jayden sleepy from the meds untill he gets used to them than from the seizures. Next week we go back to Columbia Presbyterian in NY for the 48 hour testing and will hopefully get some more answers. It will take some time to figure out how to control the seizures but we will do whatever we have to so Jayden can continue his recovery. He did OK in his therapies today although he was a little sleepy. Yesterday Jenny & I got a real treat, Jayden was always very ticklish on his thighs but has not responded untill yesterday when I tickled him there and was hysterical laughing. I truly belive that a childs laughter is the greatist sound in the whole world! Jayden continues to laugh and smile at us everyday, we make sure to do silly things and let him know it will be alright. Laughter is the best medicine, don't ever forget that. Jayden also spoke to me yesterday, I was feeding him and he looked at me with clarity in his eyes and he said "no more" and went into a seizure. It must have overwhelmed him, and I almost passed out. He has been trying so hard to come through this fog that he is in, but the fog is slowly lifting and soon it will be clear. We must again thank everybody for a wounderful time last friday night at the spaghetti dinner. And of course we must always thank everybody for your continued prayer and support. And as always we thank God for everyday, we know how important each day is, and how important living each day is, and how important we all really are. Good night and God bless. Love Andy, Jenny & Jayden SEPTEMBER 25,2004 Hello all, We had a nice quiet day today. We took Jayden for a walk around Brookdale park in his wheelchair, he was very relaxed and seemed to enjoy it. It was a beautiful day. Jay is still having seizures but we are noticing more often he is setting them off by either hitting his hand or foot into something. It seems to be a sensory overload? We will hopefully find out more wednesday. For those of you who will be joining us next sunday october 3rd in Wayne for the http://www.meningitis-angels.org/Alexa-Meningitis-Walk-A-Thon-2004.htm we will be meeting at 9am by Packanack lake at the soccer field by the fire house, the walk starts at 10am. We hope to see you there, it will be a great day for a very important cause. Jenny & I are looking forward to meeting with Frankie the founder of www.meningitis-angels.com who lost her son to this horrible disease and had the amazing strength to form an organization dedicated to doing everything possible to inform and help people touched by this disease. We are also looking forward to meeting with Michele & Chris who lost Alexa to meningitis. These are some incredible people who are dedicated to doing all they can to prevent the spread of this disease. Spread the word not the disease! There will be many amazing families who have been touched by this disease. Please if you can support this cause, but please inform yourself! This will be a beautiful day, with lots of super people and some great food provided by Outback Steakhouse. Hope to see you there. Love Andy, Jenny & Jayden SEPTEMBER 28,2004 Howdy yall, Sorry we haven't been able to email more latley but we have been very busy with Jayden. He is doing well, the new meds have him very tired but he is getting used to them. His seizures are slowing down a little, but we watch his every move because if he hits himself he has a seizure. Tomorrow we will go to NY for the 48 hour testing and we hoping to get some kind of answers. Jayden will go an hour or so with no seizure and he will start to become very alert and focused and try talking, then he will have a seizure and it knocks him out. We have to get them under control so we can continue to move forward. He is also so weak from the meds and the seizures we have cancelled his therapies untill we know more since he has no muscle strength. We will keep you informed from NY somehow. Please help us pray for some answers. Thank you for your continued prayer and support. Love Andy, Jenny & Jayden SEPTEMBER 30,2004 We're home after an 18 hour EEG/video test. Jayden was a trooper, as always. The doctor said Jayden had a lot of activity in his EEG. She said that he has 2 types of seizures, myoclonic and tonic. She thinks we are on the right course of medication and we'll up his Keppra, since there is room to go up. Hopefully, these medications will help control them. It's all up to the medications, as to which ones will work best. We were a little disappointed, as we expect to have answers and solutions instantly. Unfortunately, with seizures, there is no exact science and it's a matter of trial and error with meds to find the one that works best. Jayden was fantastic in the hospital and always manages to smile throughout of all of this. It's not always so easy for us. We hope we're on the right track to controlling these seizures. All the best. Love, Andy, Jenny, and Jayden