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JULY 31, 2010

Just wanted to say hi to everybody and hope your summer so far is good and fun. Jayden finished the summer program at his new school Passaic County Elks Cerebral Palsy Center. Its a wonderful palce with wonderful people and we can't wait to start the school year in september. Jay is getiing stronger, more vocal and just feeling and looking better. He is doing well on his amoxicillian twice a day since finding out he has no spleen. His seizures are a little better, he's having and average of 5 a day still but its not stopping him nearly as much as they did. He is a fighter and is always moving forward trying, trying trying! He continues to try and speak so much and hopefully some day it will all come together. He is doing good with his ASL sign language. His little sister Dakota is as always his best medicine pushing him further and keeping him going. We will now just figure out day trips for the next five weeks, so if you have any good ideas or invites please let us know. We are also looking for a special needs tricycle, a rifton wrangler type with body support for Jayden if anyone knows of any used ones for sale. Hope you all enjoy your summer. Peace :)

If you would like to follow all the updates please follow JaydensJourney on Facebook at


Its just easier for us to keep the updates going via cellphone.

Thank you as always for your continued support and prayers. a lot is always going on but we try to keep you informed. Thank you again! 


August 1,2009 

 Happy Summer everyone! Jayden finished school till september this past week so we will start some day trips with the kids to the beach, aquariums, and find some fun stuff to do, any ideas you may have are welcome. Since the last update things have been very busy, very crazy with Jay and with our lives. Luckily though we are all doing good and Jaydens seizures are limited to when hes sleeping.We are still tweaking the meds and the VNS and know things will only improve with time and patience. He is getting stronger each day and did great this past month in school. As we have learned each day is a move in the right direction and a little better. Little princess Dakota is the best little sister in the world to Jayden and helping him so much, we are very proud of her. Enjoy your summer and hope it is a great one.

Laugh, live, love, and enjoy!

-Andy, Jenny, Jayden & Dakota


JULY 4th, 2009 

Happy 4th of July to all! Have a happy and safe holiday.
We are finally home after a good scare from Jayden. Tuesday Jay didn't seem well with fever and becoming lethargic I called my Department and with the assistance of them and NYPD Jayden was rushed back to NYU Hospital in a horrible flooding rainstorm at rushhour without a problem, Thank you as always to Sheriff Speziale and everyone at the Passaic County Sheriff's Dept, and a special thanks to NYPD for the escort straight into NYU. When we first got there the worst was assumed such as infection in brain possibly meningitis again, or shunt malfunction. Every test and precaution was taken. He began having uncontrollable seizures, about 75 tuesday night into monday morning alone. Time went on with no answers, then they started going down the list of what it wasn't and 48 hours later still with no answer and everybody scratching their heads and Jayden showing signs of improvment it was concluded it was a reaction to Jayden getting off the steroid he was on from the brain surgery the week before. A very small problem which had everybody going nuts. That's my boy ;) As always the doctors, nurses and staff at NYU were amazing and did everything possible for Jayden, Jenny and I in such a traumatic time. Well we came home again today and hope to stay home and get Jayden back on track. He is doing good for going through so much in the past few weeks. We are focused on a very good summer ahead with fun and BBQ's, parties, going to the beach and just enjoying as much as possible. Thank you for all your prayer and support as always and please enjoy yourselves and be safe. Love ya



June 29, 2009 

Hey all,

Just a quick note to let you all know we are home and so far things are looking very good Jayden. We still have adjustments to be made with Jay's Vagus Nerve Stimulator, and with his medications over the next few weeks and months ahead. But overall we are seeing some very good things. He is recovering very nicely from all he has been through and we are looking to getting back to just enjoying things after living in and out of hospitals for the past few months. We'll keep you updated on how things are going. And thank you all for being a part of our journey. Thank you for your amazing support. Love ya all!

Hope to see all September 26th at Jaydens benefit/celebration dinner. Its gonna be the party of the year!!


JUNE 23,2009 

OK everything has changed since the last update. At first we were very upset but we are hopeful and optimistic that this change in gameplan will work for Jayden. Over the weekend it was noticed that Jayden is having a lot of seizure activity on both sides of his brain. This is not what was seen with his last EEG but it seems the medication Depakote he was on was keeping the activity down on the right side, he was taken off depakote for this surgery due to bleeding issues. So now the focal surgery may not be worth the risks involved and may not help much at all. Another option of finishing the corpus colostomy the separation of the 2 sides of the brain could interfere with Jaydens ability to sign with us. Since sign language is his only communication we do not want to chance loosing that. So we have been given the option of a VNS vagus nerve stimulator which is kind of a pacemaker for the brain. We are hopeful this can be the answer we are looking for. We don't know if will help a little or control Jays seizures but hopefully it will slow them down and with maybe less meds things will get better.

 Later today around 2pm they will remove the grids and strips off Jaydens brain since there is no need to monitor anymore and he is in some discomfort and at the same time they will implant the VNS. We will hope for the best and see what happens. Please pray for Jay today, the removal of the grids and strips is still a major brain surgery today and the implant of the VNS is not as intense but still big. He will probably be in surgery till this evening. This was not the route we expected but it may be for a reason so will wait and stay focused and positive this will help him. Thank you for all your continued prayer and support during this most difficult time.

I will also ask all of you to please include a dear friend of mine Ben in your prayers. Ben is a superhero friend of ours and an inspiration who really needs all your help. Love ya Ben we are all here for you and ready to fight with you!

Love ya all -Andy

June 18,2009 
 Jayden had his first of the 3 brain surgeries today and did very well. Dr  Weiner (the best brain surgeon ever) and team at NYU placed grids, strips and probes on the left and right side of Jaydens brain today, and was very happy with the way it went. Now Dr. Lajoie and team (the best epileptologist ever) will monitor Jays seizure activity for the next few days to find the "hot spot" or spots and then the 2nd surgery will be to remove the area or areas causing the seizures. The 3rd surgery will be removing the grids, strips and probes after monitoring him for a few more days after the 2nd surgery to make sure all the Hot spots are removed. I am not 100% sure on all this medical stuff I actually thought they just shrunk down Spongebob and Patrick in a tiny sub and sent in to Jaydens brain to do all the work, boy was I wrong LOL. Jay is resting tonight and seems a little uncomfortable but what can you expect for for what hes been through. In a few weeks we know when its all over Jayden will be better than ever. We thank you all for the amazing support today. Thank you to everyone at NYU for everything. a special thank you to Wilma and Megan for helping out Jennys mom and my Princess Dakota today. And a very special thank you to Frankie from Meningitis-Angels.org and her niece Lacey for stopping by the hospital before Jay went into surgery and then taking us out to eat and distracting us and keeping us laughing during the surgery. We still have a ways to go so keep up all the prayer, support and positive energy. And if your in the area and want to drop by NYU please let Jenny or me know, a smiling face is always welcome during these long stays. Thank you for being part of our journey. Love ya!

JUNE 17, 2009 

 Good morning all.

Just to let you know Jayden will be having the first of the 3 part brain surgery to control his seizures tommorow morning. We ask that you pray, send good energy, and keep Jay in your thoughts over the next 3 weeks as he will undergo a lot. We will need all the support and help we can get.

Love ya!

Jenny & I will be keeping constant updates on our Facebook pages, and the easiest way to contact us. Thanx

JUNE 6,2009

Alright a lot has happened in the past week so I'll try and squeeze it in. After being at NYU for more than week of Jaydens health going up and down. His body was having a hard time metabolizing the dilantin. His blood levels were so high and would come down a little and then go back up. Finally last thursday afrter seeing Jayden just getting weaker laying in bed and being moved around from room to room and not getting any rest we asked to come home and continue taking him for daily blood level checks. He needed to be home to get back on his feet, and we all needed rest badly. Jayden was very happy to be home and see and play with his sister who missed him very much. Its still up and down with his strength and appetite and focus and seizure activity but overall better. Yesterday his dilantin level drastically dropped and we started the med again and we will see how he does. We must watch him very carefully and monitor his seizures and how he seems. As of right now we have a tentative date of June 17th to start the 3 part brain surgery. We are hoping the next week goes nice and smooth with no major bumps and we can proceed along with the surgery. We just want to move forward and help Jayden as much as possible.

Until the next update Luv ya all! -Andy


MAY 28,2009

Ok Update time. Jayden came home from the hospital last week and was doing pretty good until this past saturday. He started to become weak and didn't seem to want to eat and got worse sunday and monday, by tuesday he could't hold up his head, could not stand and refused to eat, drink or take meds. We were very concerned about his rapid decline so after contacting Doctors at NYU who got him a bed right away I called my Department for assistance to help me get him to NYU ASAP. Well of course Jayden was at NYU within 25 minutes with a police escort from my Department and the assistance of the Port Authority PD. A very special thank you to everyone at my 2nd family the Passaic County Sheriff's Dept, who got us there, and a very special thank you to the Port Authority PD for getting us through NY traffic without a problem. I love my family in blue! And it was agood thing too, once we settled in and they checked Jay's blood his new med dilantin level was double what it should have been. He was so overmedicated and so lethargic. But everyone at NYU got things going quickly and the levels are coming down now very slowly but he is showing signs of improvement. We know it will be a few more days till the level is good and they can refigure the correct dosage. The room at NYU is small and cramped the Doctors, nurses and the whole staff there is so wondeful we don't mind the long stays and have gotten very use to them. We also always meet some incredible kids and their familes who become good friends. Its a tough place to be but we know we are in good hands and and always make new friends who help us through along with all of your support. So the new gameplan now is to get Jay strong again, he is too weak for brain surgery now. The blood issue they feel he has had all along and will give platelets before next surgery just as precaution. he will be scheduled for the brain surgery within the next 2 to 4 weeks. These past few weeks have been very trying, nerve racking and stressful for Jenny and I, and even Dakota has been having a tough time understanding what her big brother is going through, but we are managing and focusing on always moving forward. These setbacks are hard but seeing Jaydens strength and determination to never quit to always smile and laugh at things is inspiring. His inner strength is truly amazing. Your thoughts and prayers and emails and comments help us during this time and we thank you. Sorry for the book tonight but its theraputic to get out and document it. Love ya all

Andy, Jenny, Jayden & Dakota

P.S. Keep the date Sept 26, 2009 open, there will be a benefit/celebration party for Jayden. If your interested in helping in anyway, or perfoming, or making a guest appearance (we've got celebrities following Jayden, of course none bigger than Jayden himself) email me(andy) and I'll put you in touch with the amazing friends I work with putting it together.


May 17,2009

Hey just a quick update. Jaydens surgery has been cancelled and we are back to square one. It seems the blood problem which has still not been solved or explained fully may have been a good thing. It seems since Jays last EEG (brain monitoring) the seizures were mostly coming from the left side of his brain and that it is what was going to be focused on and removed. This EEG shows seizure activity all over on both sides and almost non stop. So going in and finding this during brain surgery would not have been good. So now Jayden is off Banzel the new drug he was on, and he his now on Dilantin in addition to the Keppra and Clonzepam he's already on. He has barely ate or drank for weeks now. We remain in the hospital monitoring his brain to control his seizures and get more answers. The past 2 days he has perked up and began to eat and drink some more. When he is focused he is on, but the active seizure activity keeps him in a fog a lot. His seizures are still very strong and completley knock him out loosing all muscle control. He still is able to laugh and show us great affection throughout all of this. His inner strength is truly amazing and keeping me focused and strong. He is fighting and we will too. Thank you all again. Your thoughts and prayers are making a difference!

-Love Andy, Jenny, Jayden & Dakota

I'm keeping more updates and pics on my Facebook page. -Andrew Singer -find me there


May 11,2009

Ok finally heard from the blood doctor who is unsure of whats wrong with Jaydens blood. There were 2 problems with the first blood test, and with the second test 1 problem cleared up but could not clear him for surgery. More tests will need to be done to find out. Due to the increase of and intensity of Jays seizures we will be checking into NYU Hospital tommorow for a 48 hour EEG to see whats going on and hopefully calm his seizure activity and get to the bottom of the blood problem and find out why he will not eat or drink.. Jayden is being rescheduled for the first part of the brain surgery next monday the 18th. Hopefully we will solve the blood problem, calm his seizures, and get him strong and ready for surgery next week. Not asking for much ;)

Thank you for all the prayer and support and emails. We'll keep ya updated on our journey.



May 10,2009

First off Happy Mothers Day.

Just a quick update to keep you informed. Jayden was scheduled to have the first part of the 3 part brain surgery tommorow morning. The surgery has been cancelled . We found out late friday afternoon that there is some sort of blood platelet problem. The brain surgeon Dr Weiner at NYU informed us Jay was not cleared due to the blood problem but he did not know the exact problem. We were told the blood expert would call us and inform us as to what the problem was, but we never got that call. So we have to wait all weekend until monday wondering and stressed. We were really hopefull to get this done starting tommorow. Jayden is not tolerating being taken off Depakote and the introduction of Banzel too good. He is showing signs of withdrawl, he has no appetite, he won't drink, and his seizures have gotten worse and are changing again. He is getting weaker and that is not good before this major surgery. We hope to get some answers soon and get him on track for this surgery. It is a very tough time for us all and Jayden really just deserves a break. Your prayers and support are really needed at this time. Thank you. Luv ya all!


April 7, 2009
Finally, a Jayden update. Sorry it has been so long.

I would first like to say today is the 5th year anniversary of the day Jayden got sick. It has been extremely difficult for us. It's a day that changed his life and ours forever. We have been very fortunate to see Jayden grow and progress but there has been and still continues to be many obstacles to overcome.

Jayden has had periods of little to no seizures to several seizures a day. For the past couple of months, Jayden has been having seizures during sleep primarily. His seizures seem to be more intense during these times.

Although we have seen progress in his hearing, Jayden seems more tired and the meds have really taken their toll. He's extremely sleepy and his energy level has decreased so much.

He has gained 15 pds and has grown 2 1/2 inches in the last 9 months. So in that respect, he's definitely thriving but with a cocktail of Keppra, Depakote and Klonopin, he still seizes and the affects of the meds are just too much.

Jayden's case was brought up in front of a team of doctors about a month ago and it was determined that Jayden is a good candidate for surgery. I recently met with his doctor and she confirmed the fact that they believe that surgery is a great option. The seizures are coming primarily from the left frontal lobe area. The main concerns of this area are attention and mobility. We will find out more as the mapping is done. We agree that this is worth pursuing. This surgery may happen as soon as next month. If the area of the brain that is causing the seizures can be determined and his odds are high at getting rid of most to all, then they will remove the damaged area providing there will be no other impairments.

It's extremely scary and yet exciting to think that this may stop these horrible seizures and put an end to an even more horrible cocktail of medications. We are beginning to wean him off Depakote, as this drug can thin the blood, which is not good for surgery. He must be off the drug totally 2 weeks before surgery. Since we have begun the wean last week, his seizures have increased so unfortunately his dr feels he needs to be on something else so his seizures do not get out-of-control. He will be starting rufinamide which is a new drug approved last year. The biggest concern is sleepiness and lethargy which is what we are already seeing so this should be very tricky to deal with. It's to help him through until surgery. Not thrilled about it but we'll see how this goes.

Throughout it all, he still makes us laugh and keeps our spirits up with his love, laughter, and sense of humor.

Dakota has turned 3 and is the most adorable, loving, pushy, and dramatic sister but Jayden absolutely adores her and as much as she annoys him, she also shows him lots of love and gives great hugs and kisses.

We will keep you posted when we have more information on a definitive date. In the meantime, continue to pray for him and for our family. It has been a rough road for us all.

Love and blessings,
Andy, Jenny, Jayden and Dakota