|
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 http://www.facebook.com/group.php?gid=60057208888 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
www.jaydensjourney.com ******** 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.
-Andy
***********
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
|
