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 until 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 in store, 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

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

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, until he starts drinking more liquids. Something is still slightly 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 understand 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

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

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 pedling 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. Thank you thank you thank you thank you

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

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

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

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 Children'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

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

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 still unbelievable how everyday we receive such incredible support from so many beautiful people. Jenny, Jayden & myself would 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

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

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 defiantly triggers something within him. Hope you all enjoy your weekend. Good night & God bless. Love Andy, Jenny & Jayden

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

Jayden, August 16, 2004

This journey definitely 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 concerned, 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 until 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 going to crawl in bed next to Jay now and watch Monsters Inc. Good night & God bless. Love Andy, Jenny & Jayden

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 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 reassures 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

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

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 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 reinsures 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

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 hiccups 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

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

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 straightened 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 until 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

 

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 allot going on in his head, he is putting all the pieces 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

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

Howdy 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 that's 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 tomorrow. 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.