***** 2/8/09 ******
I received a call from the ADA on Kenneth's case about this Tuesday... She told me that the case is scheduled to go in front of the Judge again... this is the 'reschedule' for the day where we all went and the lawyer and defendant never showed. I am hoping everything goes back to Judge Carter and that this Judge doesn't try and 'deal' or anything. If everyone can do me a favor and say a quick prayer that the case goes back to the good Judge and gets handled the way it should. It should get the time and attention it deserves and justice should be done. Thank you!!!
A little update on Kenneth: he went to New Jersey on Thursday to see Dr. DeFina who wants to use this special program on Kenneth to help him talk. Kenneth sat in front of a computer, had stimulators places on his head, and played this 'game'. A sailboat appears on the screen and there are no 'controls' for the game -- you control it with the correct signals in your brain. So, Kenneth concentrates on making the boat move across the water and every time a signal is sent to the part of the brain they want to stimulate and 'work on' the boat moves... if he loses concentration OR the signals go to the wrong part of the brain that they don't want to boost the boat stops!
So, it literally trains the brain to stimulate the correct part they want to work on: speech! They have sailing, bowling, and a little maze where you try and get to the end. He did a 30 minute test session and then they had a specialist evaluate him. She is going to take that evaluation and Dr. DeFina will create a version of the game specifically for Kenneth and the area he needs to have worked on the most. After just that 30 minute session he has, since Thursday, said 'Mom', 'Dad', 'Hi', 'Bye' consistently, over and over and WITHOUT ANY 'tools' like a tissue or our cueing. He also did his 'vowel sounds' for the speech therapist at St. Charles without any hesitation or cueing!!!!! And that was just after a 30 minute test run!!! So, once the game is made for him (it takes two weeks) he will start doing it once a day! We are thrilled!!!
The best part is how happy Kenneth is with himself... When we initially got some words, sounds, etc. they were with the 'aid' of a tissue in front of his mouth for some odd reason he discovered he could do it with that and then had trouble doing it without the tissue. Since then, you could tell he would get frustrated and not really try the sounds anymore... Since this first session, however, he is so excited to talk and has made the sounds without us even having to ask him -- and has said clear words, consistently and in the right context (trying to get my mom's attention, or whatever). We are SO happy and excited for him to continue to work with this game!! The technology is absolutely AMAZING.
Other than that, he is happy and very upbeat... He works so hard at St. Charles in therapy and really enjoys it. He plays the Wii like crazy with Christopher and is getting really good at it. He also plays board games with us and works on his 'homework' from therapy with me every night. He is SO much more aware and attentive -- it is remarkable!!! I used to have to ask him things slowly or sometimes have to repeat my question - not anymore! Now, I say it in passing and he hears me and answers! It is GREAT!!
We're getting there...
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***** February 26th ******
Kenneth is improving with his speech increasingly well. He has now had four sessions with the neurofeedback I told you about. We discontinued speech at St. Charles because the speech person there was not very nice - very negative with Kenneth and rolled her eyes several times if he couldn't get something right away. As a professional, who works with people with brain injuries - how can you treat them like that? And if she thinks they don't realize it she is very wrong - most brain injury patients are VERY aware of all of their surroundings and vibes -- especially Kenneth. There were many times where she flat out told us that she didn't think he understands much.
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We just laugh - I mean, anyone who knows Kenneth and has seen him interact with us can see - he actually understands EVERYTHING. The speech person at Kessler was SO upset about this - she even called the woman on the phone and after the conversation told us that he needs to leave there.
On a good note - PT and OT are pretty good there so we'll stay for that. PT fitted Kenneth for a leg brace to help that right leg when he walks. He got up with a cane quite a few times and seems to REALLY like the way the brace is now supporting him - he had a huge smile on the first time he got up with it and even started to try and speak almost to say, finally! What took you guys so long to get me this brace? hahaha.
For speech, we take Kenneth alllll the way to Edison, NJ two times a week. The person who was at Kessler and worked with him (we LOVE her) has left there and is going to start working with Kenneth - we are so lucky. At first, we were looking into other speech people on the Island and, by chance, I found a GREAT one nearby but since Kenneth needs to go there twice a week for his feedback sessions for a few months anyway - he might as well get the speech from someone he knows well and has worked well with in the past. However, he will need speech close to home in the future and I will definitely hang on to the info of the person I found for then! She sounded perfect on the phone - and I think Kenneth is going to really like her.
He now says: I want Mom (or Dad) when he needs them for something. He says, Mom, Dad, Chris, Hello, Bye. and we are working on Dani or Jenn. Vin is hard - it comes out as Bin lol. then Kenneth laughs b/c he realizes it is not quite right!
He sings all the words to Happy Birthday and says Kenneth VERY clearly. That is amazing to hear!
We have been singing a lot of Christmas songs in February! Kenneth always did like Christmas songs and since they are songs everyone knows pretty well (kind of like Happy Birthday) we started to sing them with him along with the 'ABC's' which are fun to sing and help him with his speech. His speech has improved so much already - the words he has been saying are more consistent, without prompt, and so clear.
The trips to New Jersey are going pretty well now! We time it right with traffic twice a week and Kenneth has gotten so good in the car - we don't have to stop for the restroom anymore, he doesn't feel sick anymore (first couple of times he felt car sick), etc. Actually, he is pretty content in the car - puts his seat back, naps a little, puts music on, wears his sunglasses, etc. He always perks up in the city and looks around - smiling. LOVES it in there.
Yesterday, we played the Bureau of Special Operations promotion DVD for Kenneth. The PD taped it for us back in June when Kenneth was at NUMC still - Jenn and I went with Christopher. Kenneth hadn't seen it yet - we wanted to wait until he was better so he could really understand it. Well, he did because when County Executive Suozzi and Commissioner Mulvey gave their speeches (back-to-back), all of a sudden, Kenneth got choked up and started to cry. We were all already crying as the speeches were quite emotional... and it was especially clear that Ken was emotional when the Commish went through the morning of the crash and the kind of cop Kenneth is and always has been. It was absolutely amazing but sad at the same time.
I've only seen my brother cry twice in his life before he got hurt - when Christopher was born and on September 11th. After he was hurt: it was about the first week (after he was hurt) when he actually opened his eyes and was pretty clear -- he had the tube in his mouth -- but my Mom explained what happened and a tear came down his cheek so that was the third and it hasn't been since then. :o)
My mom, sister, and I went to the wake of the Suffolk County Police Officer who passed away last night - it was so sad... absolutely horrible, actually. We wanted to show our support and we wrote out a nice card for the family. It was great to see so many officers come out and show their support too. There were about 1,200+ Suffolk Officers and I would say an additional 1,000+ various from Nassau, to State Troopers, to Village PD, to the Fire Depts and EMTs. The whole thing hit very close to home for us. As much as no one should go through that and I wish so bad that poor man didn't - it made us more grateful that Kenneth is alive than ever before. It makes me cry just to think about it. Kenneth was so close to being in that Crown Vic - by the grace of God he was switched to an Impala at the last minute. I lost count of how many things happened that night/morning that, in turn, saved his life.
That's our update for now - So, we have St. Charles OT and PT three times a week (Monday, Wednesday, Friday) and New Jersey for neurofeedback and speech therapy two times a week (Tuesday and Saturday). The trip is a total of two hours each way but not so bad when timed right!
We have court again on Monday - We will be discussing the possibility of accepting a deal so we don't have to go through the stress and inconvenience of a trial. We'll see - I'll update you guys when something is 'final'. We had court about five times in the last two weeks - it was crazy - with the Police who were at the scene testifying... very hard stuff to hear. We want to avoid having to go through all of that as much as possible.
Thank you all again for your continued support!!!
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