JULY 7,2006 Hello to all A belated Happy 4th of July to all, hope your holiday and weekends have been good. Jayden has been responding to the Cochlear ear implant, he has been imitating a few sounds and tones. We are on the road to hearing again, it will be slow, but we are getting there. Jayden & I spent the past 2 days at New York Presbyterian Hospital for an overnight EEG to check his seizures, just the guys hangin out. The Doctor has noticed a little calming in his overall seizure activity which is great! Jay is still showing some signs of small seizures breaking through again and fell down down last week because of one. So once again we must watch him like a hawk. But with some more blood work over the next week the Dr, Leary hopes to change his seizure meds a little to straighten Jay out again. It could just be due to his weight gain and growing. Jay & I had a very nice surprise today while leaving the hospital, we met comedian Bill Murray who came over and spent a few minutes with us. A very nice, funny man who also does a lot of charity for for the Presbyterian Hospital. Mr. Murray also told me when he saw Jayden's Spongebob shirt, that his brother does the voice of the "Flying Dutchman" on Spongebob, one of Jay's favorite characters. Once again a very special man who spent some time with us just making us laugh, thank you Mr. Bill Murray. Jayden also started a new School in Mountain Lakes for the Deaf & Hard of Hearing, it seems like a great school and Jayden really enjoyed his first day. The staff and Jay's Classmates seem great. Jenny & I are so proud of him! His sprit and attitude are wonderful! And of course he is being a super big brother! Thank You all for your continued prayer & support. Love ya Andy, Jenny, Jayden & Dakota JULY 26,2006 Hello all, Just a quick update since its been a very busy summer so far. Jayden is doing very good with the Cochlear ear implant. He is recognizing sounds, and responding to some. He can imitate some tones. He seems very excited when he hears at times. Jenny & I are just doing repitition with him, and he now repeats the words "pig" and "rabbit" although rabbit is babbit but he trying so hard. He had another mapping today for the ear implant at NYU, and is really listening more and more. The summer program at Lake Drive School for the hard of hearing & deaf is great for Jay. They are doing some wonderful things for, and with him. Jenny & I and I think Jay all love the school and the staff. Jayden's seizures started to get a little worse again, but with med increases of the Felbamate he is getting better. The increase has thrown him off a little, and caused some more insomnia. We have noticed Jay's playing is more purposeful and focused. He is using his right hand almost as much as his left now, almost fully overcoming the paraylsis!. We have noticed and the school pointed out how creative Jayden is, its amazing what he does some times. And of course he continues to be the best big brother to Dakota. Jay has no school for the month of August so hopefully we will just take some nice family trips to the shore and play on the beach. Hope you are all enjoying your summer so far! Love Andy, Jenny, Jayden & Dakota AUGUST 31,2006 Howdy yall, It has been a couple of weeks since we have done an update, sorry but we have been busy just trying to enjoy the summer. Jenny & I have been taking Jayden to some fun places like Chuck E Cheese, Bowcraft Amusment Park and just places where he can enjoy himself. Like most of you we have also had to get ready for school. It will be difficult but Jay will be going full time at the Lake Drive School for the Deaf in Mountain Lakes. It has been tough the past few weeks as Jayden's seizures are getting stronger and some days more frequent again. He has gone up, and will go up on his Felbatol to hopefully help. Jay has had a few myoclonic seizures again where his body locks out and he looses his breath for a short time. It is frustrating for us all to be going backwards with the seizures again, but we will control it again. We are back to constantly holding onto Jayden for his safety, he has taken a couple of hard falls due to the seizures and banged himself up. On a good note he is responding well to the Cochlear implant, Jay is really trying to imitate sounds and words. It will just take time for his brain to figure it out, and when he goes back to school they will really work with him. Jayden has been also been a very big help with his little sister Dakota. He enjoys playing with her, showing her his toys, and helping us with her. He is a great big brother! We hope you all have enjoyed your summer as it comes to close already. Love Andy, Jenny, Jayden & Dakota ****PLEASE CHECK OUT THE UPCOMING EVENTS PAGE FOR INFORMATION ON THIS YEARS MENINGITIS WALK-A-THON. PLEASE JOIN US!!!!**** SEPTEMBER 18, 2006 Good morning to all, Well our first week a school was overall good, but did not start out that way. The first day Jayden had a very rough day adjusting and was almost uncontrollable, and uncoperative. But by the second day he got into the groove. It is a long day for Jayden, but thankfully for Jay's teacher Ms. Hofbauer she is letting him go at his own pace. Jayden seems to really enjoy the school, teachers, aides, and new friends. Unfortunatley Jay starting running a fever last night and woke up this morning still with a slight fever, and just not himself so he stayed home to rest. Hopefully he will be better tomorrow and back in school. Yesterday on Sunday Jayden & I(Andy) went for a very nice walk in Garrett Mountain, he did great walking through the trails, I supported him at all times. He really had to concentrate on his walking over the rough terrain and did a great job. He really enjoyed the scenery watching the water running through the small streams, we saw a lot of wildlife. We sat by the pond and just watched the ducks for a while. Jayden was very calm and relaxed, it was very nice. Jayden is interacting with his little sister Dakota so much now. Yesterday he was sitting in front of her using sign language to tell her about our trip to the park. He really enjoys spending time with her and showing her toys, and trying to get her to play with him. And soon she will. Dakota just lights up when she sees Jayden, and loves to watch him doing things. We are so proud of what a great big brother Jayden is! We are also very very very proud of how Jay is doing in school! The seizures are a little better but still there. Some days are better than others. We are still adjusting the meds, and hopefully soon we will have them under control again. But in the meantime we watch and hold onto Jay at all times. Jenny & I try to let Jayden do as much as he can by himself, but we must be so carefull with the seizures. The most important thing is that Jay just enjoys himself as much as he can. Thanx for your continued prayer and support! Love Andy, Jenny, Jayden & Dakota. SEPTEMBER 27,2006 Just a real good quick update. Jayden was in the bathroom and his sister was in the next room crying. All on his own Jayden signed that he heard the baby crying. He is amazing! -Luv ya all Andy, Jenny, Jayden & Dakota OCTOBER 16,2006 We had our walk yesterday and it went really well. It was grerat to see our angel friends. The weather was really comfortable for walking. Thanks to all those who donated and continue to support the Meningitis Angels. You can donate to our organization at any time through www.meningitis-angels.org. Jayden is doing great in his new school. He has a wonderful teacher and some really nice aides working with him. He likes it a lot and looks forward to going each day. We've seen some really nice changes. Jayden has been initiating more with his right hand and his coloring has improved so much. He's still vocalizing and can mouth certain words. His seizures have been increasing so we have increased his Felbatol a bit and this past Friday we went to another seizure doctor to get another opinion. We liked her very much and she has given us some options. In November, Jayden will go for an EEG at NYU and there are other tests that can be done, which were brought to our attention. She gave us so much information. Jayden's seizures may be coming from one particular area of his brain. An eeg may not necessarily pinpoint where but the other tests that we can do, can determine that. We had not been told about these other tests by any other doctor. We really like how knowledgeable she is. We're hoping she is the one who can finally control Jayden's seizures for good. We're praying that she has the answers that the others have not. Jayden will also be getting his adenoids and tonsils removed after Thanksgiving. He has been snoring really bad, which has interfered with his sleeping, so unfortunately another surgery. His enlarged adenoids and tonsils can affect his seizures, his speech, his hearing and sleeping. They need to come out. Hopefully, he'll improve in all areas that might be affected. This new doctor we saw, suggested a sleep study on Jayden as well, before his surgery to have a baseline. After surgery, we can do another to see any improvements. Other than the annoying seizures, Jayden is enjoying this time of the year. He loves the creepy decorations outside the house and can't get enough, the scarier the better. His favorites of course are Dracula, Frankenstein and Wolfman. Hope everyone is well and we'll keep you posted on Jayden's progress. Love & blessings, Andy, Jenny, Jayden & Dakota NOVEMBER 2,2006 A Belated Happy Halloween to all! Be sure to check out our Halloween pic on the newest pics page! We just spent 3 days at N.Y.U. checking on Jay's seizure activity. We are going to be trying a new med Triliptol, and decreasing his Frisum. We will also be looking into the option of brain surgery in the future. We will have a lot of testing over the next few months to see what is happening. Stay tuned! If your into great Jazz music check out a friend William Woods at www.williamwoods.net or http://www.myspace.com/williamwoodspiano He is a great muscian and even a better person, 50% of profits from his CD will go to Habitat for Humanity. Luv ya all, Andy, Jenny, Jayden & Dakota NOVEMBER 29,2006 So sorry for the delay in updates. We've been a bit overwhelmed these days. Jayden went to NYU on Halloween and was there for 2 days. His new Dr. wanted to determine if Jayden's seizures come from one side. So far, it appears that the seizures are coming from the right side. She has decided to slowly drop one of his meds (clobazam) and add another Trileptal, for the partial seizures. Jayden, as usual, was a trooper and cooperated very well. We had planned a Disney trip for him for the beginning of November, but decided to cancel when we saw Jayden's seizures worsening. So, we'll go when Jayden can truly enjoy it and not have so many restrictions. We also cancelled Jayden's tonsil and adenoid surgery until he is off some of his medications. Anesthesia with all the meds that he is on, is too much for him. We'd feel better when the meds are reduced. Possibly by February, we can reschedule. Jayden has also had a sleep study done and he has obstructive sleep apnea, which confirms that he needs to get the surgery. Once the surgery is done, it should improve his sleep and breathing significantly. His seizures can also improve as a result. Jayden is now taking an iron supplement to bring his ferritin level up. The iron level in his blood is 18 and should be about 50. This also interferes with sleep (which is common in people with sleep disorders). His level will be checked again in 3 months. We are currently trying to set up a MEG scan on Jayden which records brainwaves in a machine which resembles an MRI machine. This scan can pinpoint a closer area where the seizures may stem from. The delay and concern is the fact that Jayden has a magnet from his cochlear implant which may cause interference with the scan. We will attempt to do the scan anyway and see if it is possible to get accurate readings with the magnet. If it cannot be done, a PET scan is the next step and eventually brain mapping. If this doctor can pinpoint exactly where the damaged area of the brain is that causes the seizures, surgery may be an option. As scary as that is, it may eliminate most of if not all of the seizures. This is where we are at now and we'll see what happens as we get closer to finding out more. We've just been a little busy :) Other than all that, Jayden is doing well in school. Still vocal and great with his little sister, Dakota, who is doing wonderful too. She's babbling alot and very close to crawling. Hope you are all doing well. We'll send another update as soon as more information is obtained. Thanks and god bless. Love, Andy, Jenny, Jayden, and Dakota DECEMBER 10,2006 HAPPY 6TH BIRTHDAY JAYDEN!!!!!! Check out the B'day pics. Luv ya Andy, Jenny, Jayden & Dakota