HAPPY NEW YEAR! JANUARY 2,2006 Happy new Year to all! We hope 2006 is a very happy, healthy & prosperous year for all. We haven't had much time for updates latley, it has been very busy with doctor appointments and running around with the holidays. Jayden has been in a slump. We are trying to fine tune the meds and he really thrown off, either having alot of seizures, or very lethargic, or both. It has been a very rough couple of weeks. We are hoping for a better 2006. We are looking into some new treatments, and options and we will just see what happens, thats all we can do. Thank you for your continued prayer & support. Love Andy, Jenny & Jayden (and Jay's little sister coming in March) JANUARY 8,2006 Hello all, Ups & downs, thats how we are starting 2006. Jayden has been in a slump for a few weeks now. We can't seem to get the meds right, we were going up on Limactal but Jay was too lethargic, and slumping to his left and the seizures were not improving. So we are coming down on the meds now. Jay has been having alot of seizures latley we are up around 10 again. They are stong ones that throw him face first to the ground, so we have had our hands full keeping him safe. It is very very frustrating but still through it Jayden seems to be learning a little more each day. He still amazes us everyday by showing us something new. And even as hard as everyday is Jayden's sense of humor is great. We pick him up from falling, and he picks us up when we are down. We will start Hyperbaric Oxygen Therapy next week, and hopefully help with Jayden's brain injury. Love Andy, Jenny & Jayden JANUARY 23,2006 Lots going on lately. On the 12th of January, we were called in for an overnight EEG from Dr. Lancman, our second opinion doctor out of Hackensack Medical. Jayden stayed there until Saturday afternoon. They pretty much told us what we already knew. He has a very active EEG which shows seizures on both sides of the brain. He would not be a candidate for focal surgery. Not that we were even considering that anyway, but it was a bit frustrating that we were there to hear what we knew. It confirmed for us that we will stick with his current doctor out of Columbia Presbyterian. We saw her actually the following week and in about 3 weeks, she will admit Jayden for about a week or so to Columbia to make medicine changes, while being hooked up in the hospital. It's much safer to make major changes while being observed in the hospital. While we wait until then, we are increasing his Keppra and weaning him off Lamictal. In those 3 weeks, he should be off Lamictal totally. We're hoping that the Keppra he's been on will help. That drug had not been fully utilized so it makes sense to try to work with it. So in three weeks, Jayden should be down to 3 seizure meds and hopefully down one more after the hospital stay. We'll see. Last Tuesday, the 17th, Jayden started Hyperbaric Oxygen Therapy (HBOT) In Hawthorne at First Step Achievements www.firststepachievements.com. He associates the chamber with a space ship and brings Buzz Lightyear with him in the car. He's been great, as usual. He understands that he needs to stay in the chamber for the hour. He was at 50% oxygen for the first couple of times. Friday, he went up to 100%, while wearing a mask. So far, he seems much more alert, vocal, and very tired after sessions. Andy sits in the chamber and gets the 50% oxygen and says it does drain you, physically. God-willing, Jayden will continue with 2 one hour sessions everyday, Monday through Friday, totalling 40 sessions. Because of the HBOT, we had pushed the Columbia stay for 3 weeks. Once HBOT is started, it needs to be continued without long interruptions in between. Plus, HBOT may make a difference in so many areas. It could happen right away or the effects could show up 2 years later. We strongly believe that HBOT will help at some point. The doctor says that changes that show up immediately usually happen towards the end of the 40 sessions. We should not be discouraged if we don't see the effects right away as we understand that things take time. As usual, Jayden is a trooper. He did great at Hackensack. It was a great hospital and the people we so nice and accomodating. Jayden handles the HBOT like a champ, and a big thank you to everyone at First Step Achievements. We're so proud of his tolerance abnd determination. Love & blessings, Andy, Jenny, and Jayden FEBRUARY 9,2006 Howdy yall, We have been very, very busy latley, so sory for no updates. With Jayden getting 2 Hyperbaric Oxygen therapies a day and all the running around Jenny & I have our hands full. Not to mention with Jay's little sister on the way soon, we have been getting everything ready for her. We have a few more days of therapy then next week Jayden will be admitted to Presbyterian Hospital where he and I will stay for a week or two, and hopefully during that time the Dr. will get aggresive with his seizure meds and find the right balance. Jayden is off of Limictal as of today. We have seen some little changes in Jay since starting the Oxygen treatments such as more focus, concentration and at times a little more vocal, but still no words yet. His seizures have changed a little again, a little better in the morning but worse at night? His attitude and sense of humor has been great. And as always through everything everyday, as busy and hectic as they are Jayden's is a trooper. When he is not exhausted he smiles and helps in everyway he can. He is truly a hero! Well Jenny, Jayden, & I (and baby too) will be very, very busy for the next couple weeks but we will try and keep you all informed. Thank you again for all your continued prayer & support. Love Andy, Jenny, Jayden & baby coming soon! FEBRUARY 21 2006 Jayden is home! He came home on Saturday afternoon. Although he still has a very active eeg, his Dr. weaned him off the depakote (last dose being Friday night). He was started Tuesday night (2/14/06) on Felbatrol. It's an alerting type drug, which is good. Of course, like every other medication, there are side-effects. But we will be monitoring him closely and he will be getting blood drawn every week for about 6 weeks. So far, we have seen a huge decline in seizures and his eeg shows some tiny improvement. We'll take it considering he was only on for a very short time when they saw the changes. He's extrememly active and hyper (another side-effect to the drug). Physically, he's much stronger on his feet and appears to "just be feeling good". We're absolutely exhausted but it's wonderful to see him feeling so good and so strong. We will gradually increase this new medication and cross our fingers. Hopefully, he will be back in school tomorrow and we'll take it from there. He completed his 40 dives with the hyperbaric therapy the Monday morning before he went to Columbia. We anticipate seeing some positive changes over the next couple of months. Once the seizures are somewhat manageable, we'll work on the next issue, the hearing. All and all, Jayden did a great job in the hospital and saw did Andy. Andy, as usual, was the best dad and caretaker, losing many nights of sleep to watch and comfort Jayden. We'll send another update when there's more to tell. We have not had internet service for about a week and a half (Comcast, go figure), so once it's corrected, updates will be sent more regularly. Love & blessings, Andy, Jenny & Jayden MARCH 5,2006 Hello to all, Let me catch you all up on our past 2 weeks. Overall Jayden is doing much, much better. The combination of Hyperbaric Oxygen and changes in medications is doing some really good things. The seizures are better. It seems to be a pattern of one day no seizures and the next day about 3 big ones which have changed to a head drop with full body stiffness which lasts about 5 to 10 seconds, some body twitching and Jay's eyes lock to the right and twitch for another 20 seconds or so. He seems to be fighting to get his eyes straight and is very upset and when the episode is over he is very tired and cranky. He sometimes takes a short nap or just tries to continue on and within 20 to 30 minutes he is back on track again. His meds have changed to morning he receives 2ml Felbamate, 7.5ml Keppra, 15 mg Clobazam, 3 1/2ml Carnitor- afternoon: 1.5ml Felbamate, 5ml Keppra- night: 1ml Felbamate, 5ml Keppra, 15mg Clobazam, & 3 1/2ml Carnitor (for our records) Jay is much steadier on his feet and enjoys walking and even running more now. Of course however he does not enjoy us constantly holding onto him. He wants his freedom and rightfully so, and soon he will have it we hope! He is becoming very vocal again, trying new sounds to communicate, but still no words. He seems to respond less now to sound though, we are still very confused. We will be meeting with a new E.N.T. Doctor from N.Y.U. at the end of March for more testing and possibly again to see if Jayden is a candidate for cochclear ear implants. We had a meeting last week with Jayden's teacher and therapists from Oakview School. We were overwhelmed at the great report we received. Since Jay's return to school after being out for 5 weeks, they all have noticed many positive changes in him. They told us Jayden's social skills are great, though they have always been. He is very good with matching colors and objects. His fine motor skills have improved alot. His getting around and walking on stairs has improved. His frustration level is better, and tolerance for activites has increased. They have seen some new and positive things from Jayden and are very pleased with him. Jenny & I could not be happier or more proud of him! Jayden has been getting alot of blood work done since the med changes. The Epileptoligist Dr. Leary is very happy with results and the way his blood results look. That is very good news! Tuesday will be here very quickly and alot will change on that day (or the next?) Jenny will be going to hospital to be induced into labor. And we will be introducing Jayden's little sister Dakota Skye Singer to our journey. Without a doubt Jay will be a super big brother, as will Dakota to be an amazing little sister. They will learn from each other as well as teach each other. We know they will be an incredible team together! It will be hard at first to adjust our already hectic schedule. We will be tired but we will just smother them both with love and affection, and we will be just fine. And of course we will have Super Jayden to help us through. He has shown us everyday how we can get through anything. We sometimes forget just how far we have come against many odds. We still have a way to go, but our team will just get stronger with the addition of Dakota, and of course Jay's incredible drive. Jayden was even a big help this past week getting the new room ready and Jenny & I believe he knows his sister is on the way and is very happy about it. Well we will keep you informed as this week happens. Love Andy, Jenny & Jayden MARCH 8,2006 Oh what a night! Dakota Skye Singer joined us last night3/7/2006 at 11:04pm at 6lbs 15 ounces and 19 & 3/4 inches big! Jenny & Her are doing just great! Thanx to Aunt Debbie for being with Jenny & Dakota through the whole thing. Unfortunatley Jayden & I were also in the Hospital, but for other reasons. Jayden became very ill with vomiting and fever, but after a night of testing, X-rays, CAT scans and plenty of fluids pumped into him he is feeling better today, and we just got home at 9am. I have still not yet seen my daughter, but Jenny describes her as looking just like Jay did with absolute beauty! We all had a tough day yesterday, but today is a new day and a great one! I can't wait to meet my princess, and I can't wait till Jay meets her too! I had been signing to Jay all day, and night that mommy was having a baby, his sister. He is very excited! Well we will keep you updated, as soon as we all get a little sleep(hahahahaha) Love ya Andy, Jenny, Jayden & Dakota YIPPEEEEEE! Check out her pic on the newest photo page MARCH 18,2006 Well the last one started off "oh what a night", this one starts off "oh what a week". After Jenny & Dakota came home from the hospital on thursday last week the fun began. Saturday night about 7pm Jenny ended up in the hospital with a stomach virus. About midnight Dakota had diarrhea and I took her to the E.R. about 1:30am, which was packed so as Jenny was getting discharged at 4am we all left. Thanx to Jenny's sister in law Debbie and Jen's mom for helping us through that night. On Sunday morning we took Jayden & Dakota to the Doctor because Jay had not been urinating alot since being sick. Everything is fine, just his body adjusting, he is still not fully on track but better. The baby was also just fine. Now on monday morning about 4am I got really sick and I ended up in the E.R. by 5pm dehydrated. So we all had a nasty stomach virus, but we are finally back on track, took a couple of days. Big brother Jayden is doing a great job. He enjoys holding Dakota Skye and he is very gentile and protective. We are seeing a definate change in Jay since becoming a big brother. In school they are noticing big changes for the better with Jay on a daily basis. The seizures are definatley better, Jay seems to have a day with none, then a day with one or two. They have changed again, and Jay seems to fight to come out of them and he is really upset afterward. He is no longer wobbly in the morning, and his balance is improving. We are allowing him to be a little more independant on his feet so he can strenghten himself. Jenny & I know the big piece of the puzzle that is missing is Jayden's hearing. He has never been more vocal than since the baby came home. He wants to speak so badly, but because he can't hear, or can't hear correctly he can't speak. We really hope to get the answers on the 29th at N.Y.U. Coclear Ear Center. Check out the new pics of the big, proud, loving and best brother Jayden. Love ya Andy, Jenny, Jayden & Dakota MARCH 26,2006 it's been a wonderful week. jayden has been practically seizure-free this week. he's doing really well in school and very interested in everything around him. he wants to learn the sign for things he sees and his aide is teaching him alot. jayden had a follow-up appointment with the doctor who did his hyperbaric therapy. she would like him to do another 40 sessions and start a sensory program. she thinks it will help jayden focus more on his hearing. he tends to tune out the sounds around him. jayden has an appointment at NYU with a dr. roland. hopefully we'll get a new opinion regarding jayden's hearing. other than that, we are hoping jayden continues to stay seizure-free. he's doing so good. we're so proud. until the next update, take care. love & blessings, andy, jenny, jayden and dakota APRIL 9,2006 Hello all, How's everybody doing? We are doing good, very good. We are going on 3 weeks now with almost little or no seizures. We have possibly seen 2 or 3 little moments of a second or two where Jay zones then comes right back, but no head drop or seizure. Jenny & I are letting Jayden walk and stand a little more on his own, we are very nervous but it is building his strength & confidence. He is getting much stronger and steady, he peddled his pedal car around the block today, and I only had to push him a little here and there to get him going. Usually I have to do most of the work. This past friday was the 2 year anniversary of when Jayden first got sick, a day we will never forget. Jayden has come so far in these past 2 years, and just wait and see how much further he goes in the next! We have been on a very tough journey, one that we wish we never had to travel. But since we have and we will continue to, we are thankful for everyday. We have learned so much about life, family, friends, strength, love, faith. We have learned medical things we would have never of known about. We have seen a side of life we would have never of seen. We have met great people we would have never met. We have learned things about ourselves we would have never known. Everyday is always something new. We learn, we research, we question. Everyday there is always something new with Jayden, but everyday there is always love and laughter! Jayden is doing great with his little sister, he really enjoys watching over her and is very protective and gentle. Once again thanks to each and everyone of you for all your continued support these past 2 years. All the amazing things you have done and continue to do is a very big part of Jayden's recovery. So thank you from us, we have not done this alone. Love Andy, Jenny, Jayden & Dakota APRIL 30,2006 It has been an interesting couple of weeks. After Dr. Roland, the ENT out of NYU saw Jayden and reviewed all the paperwork and test that had been done, he called and said Jayden's cochlear was open and would be a good candidate for a cochlear implant if his hearing tests at the cochlear center were consistent. After 2 days at the cochlear implant center, Jayden's results were consistent with profound hearing loss (sensorineural hearing loss). So, it was determined that Jayden can get a cochlear implant. Since we don't want to waste anymore time, we have agreed to pursue this ASAP. Dr. Roland gave us a tentative surgery date of May 24th. We have an appointment on the 11th for final questions and information about what we can expect. Andy and I have mixed emotions about this. The audiologist said the implant can definitely get Jayden to hear again, but how his brain interprets what sound comes in cannot be determined. With the amount of hearing he has, he cannot develop his speech. We're optimistic that this is the right decision for Jayden. He will be able to hear and hopefully will get speech back. It may take a short time to come, or it may take a long time. There are no guarantees. We're scared about the surgery and about the whole thing. The implant is inserted into his cochlear allowing sound to come in. Any existing hearing he has will be gone and he will be dependent on the implant for the rest of his life. But his hearing will not get better on it's own. So we must do everything we can to help Jayden's development. Jayden has been very vocal again, making all kinds of sound. It gives us hope that once he can hear, he'll remember how to speak. He'll need lots of speech therapy and he'll need lots of time to relearn how to hear, especially with this new device where hearing will be different than how we hear. We have no doubt Jayden will continue to move forward. We want to give him every opportunity possible. Please continue to pray for him. This is a very difficult decision to make but in the long run, it's probably the best thing. Love and blessings, Andy, Jenny, Jayden and Dakota MAY 22,2006 just a quick update today. jayden will be having cochlear implant surgery this wednesday, may 24th. we're scared and excited at the same time. there are no guarantees but knowing that there is a possiblity of jayden hearing and speaking again has given us new hope. jayden has been cleared by his pediatrician and epileptologist. at some point, after his surgery, he will need to get another overnight EEG at columbia presbyterian. he is still getting small staring spells and has had his felbatol increased. otherwise, he continues to do well and loves his sister. he's very delicate with her and wants to help out and get us whatever we need for her. we will update you all after his surgery on how he recovers. it's an overnight stay for observation and hydration. the surgery itself is about 2 hours long. we will need to wait 3 weeks before the implant is turned on and than who knows. please say an extra prayer for our champ. check out the pics! love & blessings, andy, jenny, jayden, & dakota MAY 30,2006 The road to recovery is never a smooth one. Jayden had cochlear implant surgery on the 24th of May, last Wednesday. His surgery was late from the previous morning surgeries. He was taken in by noon. We were there by 8:15am. Jayden was really patient and I believed sensed something was going on. He never asked to eat or drink anything. He never leaves the house without eating, but he was his usual trooper self. The doctor called us in at about 2:00 and said that Jayden was fine. He than proceeded to tell us that there had been some changes from Jayden's MRI from last year. When he began inserting the implant, he hit a point where the implant would not go in any further. It seems that ossification had formed (bone formed in his cochlear). It is very common in meningitis patients. He said either the MRI didn't pick up on it, which happens, or the bone formed in the last year. It would explain how he seemed to hear more last year than this year. He said had we tested him last year and had any existing hearing, he would not have been a candidate for an implant. So, we might have been in the same place now anyway. He was disappointed in that he wasn't able to put the full implant in. The implant has 22 electrodes picking up different frequencies of sound. He was able to put 14 out of the 22. He said he has lots of patients who have 10 electrodes and do just as well. 22 would have been ideal, but 14 isn't too bad. He says once the device is turned on (June 21 & 22nd) and adjustments are made, we'll see how well he does. He said to give it a couple of months and if we're not satisfied with the results that we have other options to explore. We need to give this time first. He said mostly all of his patients with 10 electrodes are doing well and speaking. So there's hope! He said too, that Jayden just recently lost his hearing so he's hopeful that Jayden will recover his hearing and speech quicker. Jayden was in the recovery room for 6 1/2 hours. He tried to wake up but due to the seizure meds, it took longer. We were very concerned about how long it was taking. He had some vomiting, which is not uncommon with anesthesia, but also having an operation on his ear will throw his equilibrium off causing more nausea. Poor Jayden ate nothing all day and looked in pain. Fortunately, by the time I left (midnight) I had him laughing and smiling. He managed to keep his meds down. Andy stayed with him. The next day, Jayden was a bit more himself but vomited what little he ate that morning. He was still in pain and given Tylenol. We weren't sure if he would be going home. The surgeon cleared him and said the area looked good. But, until Jayden could keep some food down, we weren't sending him home. Later, in the afternoon, he went to the playroom and saw a clown. He perked up and ate a little. So, by 4:00, Andy said he wanted to bring Jayden home. Thanks to our neighbor and friend, Bobby, we went to get them. Jayden was exhausted but ate a sandwich before bed and slept so well that night. He was much more himself the following days and seems to be back on track. He was so happy to be home and see his sister. Thanks to my brother, Joe, who came with us surgery day. Kept our spirits up and made us laugh. He went home at 3:30pm and came back for me that night and has been a wonderful support to me. My mom, as usual, was my support with Dakota and Debbie ran errands for my mom, making several trips to see Dakota and check in. And Andy, of course, the best father, sat by Jayden's side all night and watched him. So, it wasn't the smoothest day but only time will tell if this works. We're exhausted, but hopeful. Love & blessings, Andy, Jenny, Jayden, & Dakota JUNE 15,2006 Howdy yall, Its been a while since we sent an update because we just haven't had any time. We are very nervous and waiting until next Wednesday when Jayden gets his cochlear ear implant turned on. We don't know what to expect? We may get hearing right away or we may have to wait weeks, or months. We will just have to see. We have been good overall though with some minor bumps here and there. But everyday is a good day. Jenny & I, and even Dakota are very proud of Jay. Today Jayden graduated from Preschool. We are very thankful to everyone at Oakview School for all they have done for and with Jay. Thanks to Jay's teacher Mrs. Ruiz, all the aides, therapists, staff and especially Ms. Judy who was Jayden's aide who was always by his side and helped him. We will miss you as we begin our new school in July, but since we only live down the block we will stop by from time to time. Congratulations once again to Jayden, we are so proud of him! Love Andy, Jenny, Jayden & Dakota JUNE 21, 2006 The implant was turned on! Jayden showed some definite responses when tested directly to the implant. When the audiologist, Janet, made a sound out loud (ba ba ba sound) to see if Jayden would respond, Jayden imitated the exact sound. He wasn't looking at her at the time. So, of course, it opened the flood gates for us and Janet, as well, saying that she had never had a child respond like that and imitate a sound. We were so happy. It'll take some time. We saw some changes at home. He seemed really into Spongebob, more than usual. But, it will take lots of time and speech therapy to get Jayden speaking and hearing correctly. As usual, Jayden amazes us again. He's is so wonderful in that he tries to adapt to situations as quickly as he can. He left the implant piece on all day and when it would fall off, he'd gently hold it in his hand and let me know. We're so completely proud of his attitude and his courage! Tomorrow he has more adjustments and than every couple of weeks, more and more. Until then, we'll do everything we can do to help him along. Love & blessings, Andy, Jenny, Jayden, & Dakota