JANUARY 14,2007 Hello all, Its been a while since we have sent an update, but we have been busy. Eveyone is fine, as we hope all of you are. A Belated Happy New Year to all. How was all of your holidays? We had a good one, Jayden & Dakota got some great presents and enjoyed opening presents, and of course playing with them! We have had a bit of a rocky road with Jay's seizures. With the changing of the meds, adding Trileptal and decreasing frisium was rough for Jayden. His seizures got much worse, but are now getting better, plus he had a cold which threw off his system. We even ended up in St Joe's Hospital monday night for 24 hours due to Jay vomiting. They had to make sure his shunt was OK which it was. It wasn;t much fun spending a night in the hospital again, but we were in the PICU and got to see a lot of the Doctors, nurses and staff who took care of Jayden nearly 3 years ago. They are truly an incredible bunch of people, and we love them all. Thank you again for taking such great care of Jayden, and us again. Jenny, Dakota & I all have a cold but are slowly getting better. This crazy weather isn't helping either. But overall we are doing good. Jayden missed a week of school, but I'm sure will be very happy to get back in next week. We also got very good news while in St. Joes Hospital. Jayden needed a CAT scan to make sure everything was good. Dr. Anderson at St. Joes who is partners with the Doctor who performed Jay' s shunt surgey saw the scans and told us that Jayden's brain looks better and more importantly his ventricles are smaller that the last scan from March of 05. This means the shunt is working fine and Jay's brain is still healing and doing very well. Jayden and his little sister are really forming a great bond and learning from each other. Well gotta go we are watching Jay's new favorite movie Monster House. Jenny and I know the movie word for worn now. Jayen acts out the scenes, and Dakota sings along, we are all so talented! Love Andy, Jenny, Jayden & Dakota JANUARY 24TH, 2007 As my father's 2 year anniversary of his death approaches on the 28th of this month, we are hit again with yet another tragedy. My handsome, wonderful brother, John Velez, Jr., was taken from us last night very suddenly. Please pray for us especially his wife, who is going through her own serious health problems. We are all deeply saddened and will miss him so very much. He was a very caring person who had one of the best smiles. He will always be in our hearts and he will forever be Dakota's godfather, in spirit. Love, Jenny John Velez, Jr January 23, 2007 (You can see a pic of John on the Newest pics page) FEBRUARY 12,2007 Well, it hasn't been dull these days. Jayden has given us quite a few scare but hopefully we are on the right path. We have noticed that Jayden has not had the biggest appetite and seems to be suffering from indigestion quite a bit the past 2 weeks or so. He has also had an increase in seizures. So 2 of his meds have been increased since his levels were not high. This past Wednesday, he gave me quite a scare while driving him to school. He had a seizure and seemed really tired. After a short nap he been to cry a bit like he was in pain. Since I was close to his school, I took him to the nurse where she agreed that Jayden did not look well. He was pale and his breathing a bit shallow. We decided it was best to call the ambulance, get him some oxygen and take him to the local hospital, Saint Clare's in Denville. Once we arrived, they administered a dylantin-type drug. He was having seizures which really knocked him out. After a CAT scan was done, which came out fine, he began to vomit. After a couple of hours at Saint Clare's and some nausea medication he was ready to be released but we weren't comfortable with that decision and had him transfered to St. Joe's. He was immediately put in the PICU step-down unit and greeted by our favorite nurses and St. Joe staff. Dr. Debruin had big hugs for Jayden and the atmosphere immediately put us at ease. Jayden continued to vomit despite the nausea meds. He had a stomach x-ray to check the shunt tubing, which was fine. We weren't sure if this was a stomach bug or medication related. After 2 days of great care, we were sent home. Saturday morning comes around and Jayden vomits again. He was immediately taken to St. Joe's emergency where the best ER doctor we have ever dealt with, Dr. Farid Naim, was determined to send Jayden home well. He had a CAT scan done and another stomach x-ray had been done. He noticed that Jayden's bowels were impacted. This explained everything. After a good cleaning out :), Jayden was perked up ready to eat and sent home. Sunday was a great day. He had very few seziures and he was himself and enjoyed eating again. He's still not 100% but he's getting there. In the process of all this, we are scheduling a PET scan and a neuropsych evaluation to determine where the seizures are coming from. Unfortunately, we tried a test run for a MEG scan which would accurately pinpoint the seizure areas, but due to Jayden's cochlear implant, there was too much inteference. So, it was really disappointing. But it's good to know we still have options and we are determined now more than ever to get to the bottom of these seizures and help Jayden with whatever has to be done. With faith, prayers and a whole lotta luck we'll get there! A special thanks to Andy's wonderful warrant squad partners who are always there for us, to my mom, who drops everything to help us with Dakota and our wonderful friends and family who always call and e-mail with concern. One quick note, congratulations to my beautiful cousin, Lianna, from PR, who came in 3rd place at her science fair. Her topic was meningitis and spreading awareness. We're so proud of you. Love & blessings to you all, Andy, Jenny, Jayden, and Dakota MARCH 7,2007 Happy 1st Birthday Dakota! You can check out new pics on the PhotoShow page, or goto http://www.myspace.com/jaydensjourney APRIL 2,2007 Sorry it has been so long since the last update. There has been lots going on. Jayden still continues to get several seizures a day. As a result, his Keppra has been increased. Some days are better than others but overall the seizures remain difficult to control. It is very frustrating. Jayden has also developed some stomach issues. He ended up in the hospital with vomiting in February due to the previcid prescribed to him. He also had bowel issues. On the 14th of this month, he saw a stomach doctor who recommended he take a lactose pill and a prilosec for reflux. He tolerated the lactose pill and we have seen improvements. His appetite has been a bit better. Last Saturday, we tried the prilosec. The following day was a repeat of the previcid incident. Back to St. Joe's for vomiting. He was kept for two days for observation because shunt malfunction was also a concern. Andy and I strongly felt it was a drug reaction. The stomach doctor agreed. She said that it wasn't uncommon to have that kind of reaction. So, he now takes Axid ( a pepcid-type antacid). Not very strong, but effective over time. Jayden was as usual, a champ through out it all. So we now know that he cannot tolerate drugs like previcid and prilosec. His appetite has been ok and we're hoping to put some weight back on that he lost. He has become extremely picky with eating so it has been a challenge. Regarding the seizures, Jayden is still waiting to have PET scan done but had his neuropsych evalutation today. Thanks to his wonderful aide, Matt, who was kind enough to come with us to NYU. He works with Jayden in school and teaches Jayden to sign. He also knows how Jayden is in school and was able to give information in that respect. He also was Jayden's interpreter. Thanks to him, Jayden's eval went really well. We'll get the results in a couple of weeks. Andy felt the Dr. was impressed with Jayden. We'll see. If Jayden is a candidate for surgery, he would be tested again afterwards. The doctor said it's the first of it's kind and would like to study Jayden for several years. He could be a case study. Once the PET scan is done. The doctors will determine if Jayden is a candidate for surgery. We're hoping this works out. Jayden's seizures appear to be uncontrollable at the moment. We want Jayden to progress without limitations. We're hoping that Jayden can finally enjoy life to the fullest. It is so hard to see him try so hard and take steps back due to the seizures and meds. All the prayers you can give would really help at this time. We'll keep you posted and update you a lot sooner. Take care and God bless. Quick message to my grandfather who passed away 10 years ago today. I love you Pop and miss you as if it were just yesterday. Continue to watch over Jayden. Love, Andy, Jenny, Jayden, and Dakota APRIL 8,2007 Happy Easter! Check out the new pics on the photoshow page. It is the the 3 year anniversary of Jayden getting sick. It has been a long road with still a way to go, but we are thankful for the road. Jayden is a miracle! **********YOU'RE INVITED!!!************ Pasta Dinner Benefit Fundraiser Sponsored by the Jerry Speziale Community Outreach Foundation, Inc. Date: August 8,2007 Time: 6:00pm Place: St. Joseph's Hall (St. Gerards Church) West Broadway & Chamberlain Ave, Paterson NJ Donation: $60.00 For information on this event please call Passaic County Sheriff's Department Chief D'Errico 973-389-5911 Shirley Vega 973-389-5900 ext 203 for more info check the upcoming events page MAY 16,2007 Where do I begin? It has been quite a while since the last update. Things have been a bit difficult. We have not gotten the results of the neuropsych evaluation yet. But, Jayden did get a SPECT scan done. It showed less blood flow to the left side of his brain which coincides with the stroke areas. The problem is that his EEG shows more activity to the right side of the brain. So, is the left side of the brain to weak to seize so the right side compensates for that by picking up where the left side leaves off? Or is there damage on the right side as well? This is the question. To decide what will be done next, Jayden's case will be presented to a group of doctors who will decide whether Jayden should get stripes or grids. Let me explain. Stripes are stripes of electrodes which are slid down a hole onto his brain. They cover sections of areas. After they do the stripes test, we must wait 6 weeks for Jayden to heal to do grids which go onto the brain but the grids cover whole areas. From the grids, surgery can be performed at that moment. His doctor feels that they will most likely need to do stripes on both sides to make sure that the left area is the area to concentrate on. Of course, putting a grid on the left side and operating would be a lot quicker which would be great. So, we must wait until the board meets and decides. We have a feeling stripes will be done first. But since we cannot just wait until surgery to control his seizures, his doctor wants him off his trileptal medication and has added zonegran. It's been about 5 1/2 weeks since this was added. He's not having as many seizures, but when he does they are strong and he usually needs to sleep afterwards. We have also seen a change in his attitude at home. He's very aggressive and hits when he's frustrated. He's also not sleeping as well. In school though, he's focused and accomplishing his work and doing well overall there. So as usual, the seizures cannnot be controlled. Jayden is currently in the hositpal for stomach issues again. He was really sick Sunday night into Monday. Although he is not getting sick now, he's not eating much or drinking much. He's getting IV fluids though. So yet another mystery. Is is a stomach virus? Is it combination of meds? Is it reflux? It's so frustrating to see Jayden go through so much. He still manages to smile and throw kisses at the nurses though. Sorry so long. It's been a while and a lot has happened. Please continue to pray for Jayden. His journey is a long and rocky one but at least he has a journey. Love & blessings, Andy, Jenny, Jayden and Dakota JUNE 25TH,2007 Where do I begin? I think the last update was left off at Jayden's stay at the hospital the day after mother's day. He was in the hospital for a week. He didn't want to eat or drink so we didn't feel comfortable bringing him home. He was on an iv in the meantime. Nothing was really ever determined as to why he was there. We thought maybe the new med he was on (zonegran) was causing the vomiting and stomach upset. It was cut down by half. His stomach doctor also added a medication for cyclic vomiting, which is vomiting caused by neurological issues. It also increases his appetite. She also wanted him to drink high protein, high calorie drinks. This nutren junior drink is easier to digest for slow-to-empty stomachs. Jayden likes the drinks (thank God) and his appetite has increased and he has gained 3 1/2 pounds. Since we have seen no improvements in his seizures or attitude on zonegran, he has been taken off the drug as of Friday, June 15th. In the meantime, we had an overnight stay at St. Joe's last Thursday. He's fine and again no ideas why he has these bouts of stomach upsets. Besides all that, Jayden's case was presented in a grand round about 2 weeks ago and it was determined that Jayden would need to go to stripes. I explained stripes in the last update. Today, we met with 2 doctors. First was his stomach doctor, she is pleased with his weight gain and improvement. We will be setting up a scope of his stomach to see if there is any underlying issues. We all agree that all the seizure meds he has been on have taken a toll on his stomach. So as soon as it's possible, that will be done. The second appointment was with the pediatric neurosurgeon that Jayden's seizure doctor works with. He was very nice and spoke in language we could understand. No medical terms. He explained the stripes procedure. He will make 2 incisions on both sides of his head where the stripes would be placed. Jayden would be in the hospital for about a week since his seizures are so frequent. With that information, we'll know if surgery is an option. Jayden would need to take 2 months break before surgery could be performed after the stripes are done. The man has done over 1,600 surgeries, 500 being epilepsy surgery. Of course, Jayden would be the first shunted patient he would be performing epilepsy surgery on, if he's a candidate. Jayden is always unique in every way. He's optimistic, although meningitis patients tend to have several hot spots on the brain from the infection. But if there is one area that is predominately causing the seizures, he would still be a candidate. The surgery stay would be about 2 weeks. We're hoping to get Jayden in for stripes ASAP! It's a lot to take in and we're mentally exhausted but we're optimistic and hoping we can help Jayden. I'll try not to go so long between the next update. I've attached a pict of Jay and Dakota. God Bless. Love, Andy, Jenny, Jayden and Dakota ********** JULY 18,2007 Quick update: Jayden will be getting brain strip surgery Thursday, July 19th. I'll update you with information as I know it. Tomorrow will be a long day as we need to be in the hospital by 6:00am. We'll be there for about 7 -10 days. Please, please, please pray for Jayden and for the surgeon. We hope to get good news and move forward to the epilepsy surgery 2 months later. I know it's inconvenient for most to travel to NY, but we'd love to see some familiar faces if possible. We'll be at NYU on 550 1st Avenue. I believe he'll be on the Peds ICU floor. Thanks for all the support and prayers! Love, Andy, Jenny, Jayden, and Dakota ********** JULY 19,2007 I'll keep this brief. It's been a long day. Because Jayden is such a unique case, instead of strips, the surgeon did grids instead. So, this is all good news. If they can determine the area causing the seizures or the the area causing the most seizures, Jayden can go to surgery. So God-willing, Jayden won't have to wait 2 months or so to have the surgery. It's was a hard day for all of us. Jayden was ill from the anesthesia and also in pain. It broke our hearts to see him suffering. His head is wrapped with 2 drainage tubes. He managed to smile a little and shake the surgeon's hand. Jayden always amazes us. We're so proud of him. I will be praying really hard for him and hope you will too. This could be Jayden's big break. He deserves it and so much more. Special thanks to our friend and neighbor, Derek, who was there for us today and made such a difficult day a little easier. He was truly a God-send! Love, Andy, Jenny, Jayden, & Dakota ********** JULY 24,2007 Well, it appears that Jayden is getting seizures on both side of his brain. It has been determined that a corpus callosotomy would be the best type of surgery for him at this time. This surgery separates the connection between the left and right sides of his brain. The doctors believe this will stop Jayden's drops and falls. Jayden's seizures are generalized and when the information goes from one side to the next it causes the head drops and body falls. Once this surgery is done, Jayden will wait about 3 months and have an EEG monitoring. At that time they can see if Jayden suffers partial seizures from one side, the right side mainly since that shows the most activity. If this is the case and it appears that he still has seizures on one side, we can consider another surgery and remove the localized area. To have the corpus callosotomy, we will need to wait a couple of weeks since this grid surgery was done. It is unsafe as this time to do this other surgery, mainly because Jayden is a meningitis patient. His risk is higher to get meningitis or get an infection. Most likely Thursday will be the day the grids are removed and Jayden will be in the hospital for at least another 3 days after that. We are not happy about how this has turned out but we are happy that something can be done. This experience has been alot for Jayden. He's been through alot especially this time around and the thought of more anesthesia for this surgery and for the next is very upsetting. Hopefully, we'll all be home by next week. Love, Andy, Jenny, Jayden and Dakota ********** AUGUST 2 ,2007 Quick update! Jayden came home Sunday night. He's been doing well. Very happy to be home, eating great and having very, very few seizures. Last night, Jayden became very ill and seemed very uncomfortable. We took him to St. Joe's and he ran a slight fever. His blood work shows an infection. His neurosurgeon at NYU is trying to connect with the neurosurgeon at St. Joes to see if Jayden should be transferred back to NYU. Hopefully, there is no infection in the brain which can affect his shunt and cause a huge problem. Please pray that there is no major infection and that Jayden will be well to come home soon. Thanks! Love & blessings, Andy, Jenny, Jayden and Dakota ********** Jayden 8/4/2007 Hey all, Real quick, Jayden keeps us on our toes. Yesterday he was not feeling good at all and was sleeping in the hospital at St. Joes all day and did not want to wake up, and could not keep his eyes open. Jenny & I felt something was going wrong, and nobody had any answers. So we contacted his Doctor at NYU and they said come right over. I called my second family the Passaic County Sheriff's Department and they sent not only an ambulance for transport but 2 motorcycles and a patrol car with the Sheriff himself leading the way. Needless to say we made it through New York friday traffic and a brief downpour to NYU in no time at all. We got to NYU and they began a bunch of testing and Jayden was placed in a isolation room due to some type of infection. His white blood count is very high and coming down slowly. Had there been an infection in his brain, Jay would be in a lot of trouble. But because he is alert and responsive they feel it is elsewhere in his body, or something else like his increased seizure activity or the steroids he was on after surgery that caused his white blood count to be so high. We are waiting for Jay to poop(to much info sometimes huh?) to check it for a possible infection in his stomach. Through everything as always Jayden continues to smile and wave and thank everyone. He is amazing! Thank you to everyone for your supportive emails, phone calls, text messages and words through this rough time. And once again I will never be able to thank Sheriff Jerry Speziale and every single member of my Department enough. Your role in Jayden's recovery is huge! You really don't know how much it means to us. We will keep you updated and the Doctors at NYU are doing everything possible to make sure Jayden and all of us will be at the Dinner wednesday night! Thanx for your continued prayer & support! Love Andy, Jenny, Jayden & Dakota ********** See some video from Jayden's benefit dinner at: http://pcsheriff.org/Jayden's-Journey.html Hope you enjoy! Thank you to everyone involved with the dinner, we all had a great time! Thank you to everyone for your support and donations for this wonderful event! -Love Andy, Jenny, Jayden & Dakota **********AUGUST 26,2007******** sorry for the cliff hanger. we never explained what happened after Andy's last e-mail. the following day, the 5th, Jayden had been showing lots of improvement, no fever, good appetite and great attitude. the resident doctor thought it would be best to send Jayden home. the doctors and nurses at nyu were wonderful. they were very caring, very concerned and the best decision we could have made. it was a big difference from the care we received at St. Joe's this past stay. we were able to get a specimen before we left the hospital to send out for testing. 2 days later, we found out the Jayden had C-dif. he was put on a course of antibiotics for 10 days. we were able to go to the dinner, obviously, by the link that was sent to you. it was a great turnout with a lot of wonderful people there from the sheriff's dept including the sheriff. it was a great night which we appreciated. we thank everyone for their generous donations. the following week, Jayden and I started hyberbaric oxygen therapy. we went twice a day for a couple of days but this past week Jayden was giving me a hard time about going. last weekend we noticed more seizures and he had a little appetite. monday i took him to the pediatrician. i suspected C-dif again. another specimen was sent out and C-dif was confirmed. apparently, it's not uncommon to need more antibiotics for this infection. he was put on antibiotics for another 10 days. we have seen some struggles with the topomax that he was put on in july. it affects his mood and makes him very aggressive and angry. we have the scratches to prove it. we have come down on it a bit and have seen a more positive change. we want him off the drug but his doctor believes this drug can help his seizures. he does have less on the drug but the attitude and loss of appetite, which happens on this drug, is too much to bear. we'll see how this plays out. tomorrow we have an appointment with his neurosurgeon for his post-op appointment. it has been a month today since his surgery. his scars have healed beautifully with the oxygen therapy. we'll also discuss the next step which will probably be the corpus colostomy in october, i think. we'll find out more about that tomorrow we hope. otherwise, we're hanging in there. summer has come and gone and has not been an enjoyable one, but hopefully all this will benefit him so that he can enjoy every summer to come. Love & Blessings, Andy, Jenny, Jayden and Dakota ****************** OCTOBER 7,2007 Hello all, It seems we only have time for monthly updates latley. We have been very busy moving, and we are completely out of our home in Bloomfield and it will be on the market this week if anyone is interested. Jayden has been doing OK. It has been a lot of ups and downs again. He has a couple of good days where his seizures aren't too bad then they go out of control. The seizures are changing once again and he seems to having grand mal seizures now. When the seizures are minimal, Jay has a good day, when they are not it is a bad day all around. We are scheduled for October 25th for Jayden's next brain surgery where Dr. Weiner at NYU will separate 3/4 of Jay's brain, the right from the left side. This will hopefully control the seizure activity from shooting from one side to the other. We are very nervous but hopeful this is the best for Jayden. The seizures everyday are just not allowing him to do very much. They wipe him out where he sleeps after ward or he is in a very bad mood. Even through everything Jayden is being a great big brother to Dakota. They are learning to play nice together, some times ;-) but he is very affectionate and caring with her. And Dakota is 19 months going on 19, she is a woman afterall and we all know how they are (I will get smacked by Jenny when she reads this!). A very special thank you to The North East Ridge Runners who had a wonderful benefit dinner the other night. It was a great time! A very special thanks to Domenick Petrillo, Herbie Dekorte and everyone involved who so hard for a beautiful night. And a special thanks to Rich Suebert from the NY Giants who was there and donated some amazing stuff which was auctioned off, and thank you for spending time with Jay and I. Also a reminder if you can join us next weekend October 14 at Packanack Lake in Wayne NJ at 9:00am for the 2007 Meningitis Walk A Thon in memory of Alexa Taylor Senyk. We hope to see you there! We will keep you advised with Jayden's surgery as we know what is going on. We will probably be at NYU for about 2 weeks with Jay. We ask that you keep us in your thoughts and prayers. Thanx and enjoy everyday! Love Andy, Jenny, Jayden & Dakota ******************* OCTOBER 23,2007 Hola everybody, Just wanted to send a quick note. Jayden will be undergoing brain surgery tommorrow 10/24/07 ay NYU for a corpus colostomy. We ask that your thoughts and prayers are with him. We will update as soon as we know how everything is going. Thanx Luv Andy, Jenny, Jayden & Dakota ********** OCTOBER 25,2007 Quick update! Jayden's surgery went very well. Better than the surgeon anticipated. He expected complications and thank God, there were none. Jayden came out of surgery, very cold. His tempertature was extremely low so he had on leg warmers and was under heat. He had the breathing tube a little longer to be safe. Surgery was done by 2:00 and luckily by 4:30 the breathing tube was removed. He was still sleeping most of the day and woke up more after 7:00pm. He seems a little uncomfortable and is getting round the clock tylenol. His spirits seem good and he signed he was wanted to drink. He still seems a little groggy but has smiled and laughed with his favorite cartoons. He's getting a ct scan shortly to check if everything looks good. Will keep you posted as we know. Thanks for the prayers. Keep them coming! Love, Andy, Jenny, Jayden, and Dakota ************ DECEMBER 30, 2007 FIrst, I'd like to apologize for the delay in updates. I'll start back from Jayden's surgery. He recovered amazingly and was home in 3 days. We were amazed. He did fantastic in the hospital. We instantly saw improvements in his coordination and the steroids made him extremely hungry. He gained 4 pounds in a week and half. His seizures weren't as bad but still there. We were told by his seizure doctor that we'd need to wait anywhere from 3 to 6 months before seeing any real results, if any. After 2 weeks home, he went back to school. He suffered a grand-mal seizure there which scared everyone. His doctor reassured us that his brain was in transition and that we'd see all kinds of changes. She wasn't surprised at all. At about 5 weeks, Jayden had a brief EEG in the office and she did see his activity was more broken up as apposed to merging from both sides. Considering it had been only 5 weeks, Dr. LaJoie was very happy to see any changes but also said that it may not necessarily stay that way. Time will still tell. Since Jayden's brain is in transition, it's like starting over when it comes to the meds. She decided to wean him off the trileptal medication which never really helped. She also started him back on Depakene which he had been on 3 years ago. So far we are in week 4 of the med changes. Some days are good some days are bad. Just like before. Jayden has also had some colds and had strep throat as well. We have definitely been busy. About 2 1/2 weeks ago Jayden had a routine CAT scan done. The doctor was very concerned at the lab and said she noticed swelling and bleeding but it could also be normal considering the surgery. We were instantly in a panic but 3 days later, the surgeon saw us and said his scan actually looked really good and that his brain looked great. The fluid the tech had seen was of no concern to the surgeon. He was quite pleased, What a relief! All in all, things are the same in a sense with the seizures. There is a slight improvement. His eyes have a brightness in them that we noticed after surgery. We're still very optimistic that this surgery will help. We have seen a major decline in his diet ever since the strep throat so we're hoping that changes. He still very funny and mischievous. Dakota has enjoyed having all of us home this week. We had fun with them and Christmas was quiet but nice. I have attached pics attached of the day Jayden came home from the hospital, a picture from Thanksgiving, Dakota and their Christmas picture. Hope everyone has a wonderful New Years. Love and Blessings, The Singers