Re: Updates on DaniRella's family

Dani, that's amazing.

You know, you should REALLY think about writing a book.

this really is an encouraging & inspiring story.

Re: Updates on DaniRella's family

---

Posted by What

Dani, that's amazing.

You know, you should REALLY think about writing a book.

this really is an encouraging & inspiring story.

---

Re: Updates on DaniRella's family

****** September 15th ******

I'm feeling very down today. I am now home for good during the week and will only be visiting Kenneth on the weekends. I had to come back to start working - I got a job in a school district as a teacher's assistant until I get my undergrad (soon!) and then I will sub until I get my master's and can teach. I just started another semester of school and somehow, I made it through the last semester (Kenneth's crash happened right smack in the middle of my semester - they run different than most colleges) and I still managed to get straight A's. Something I happily told him recently - he looked really pleased. He was the one who got me to go back to school and realize what I wanted to be and that I wanted "more" out of life and a job.

I feel an overwhelming sense of emptiness being home. I can't bring myself to do much of anything - I start my perm position in a little over a week but had to come home now to get ready for that and get some college work done - meet with teachers, etc. I don't feel ready for "real life" to take over again - it feels so odd to be doing things I have not done since May. I have come such a long way from the day I walked down that long ramp at NUMC into the ER -- seeing about 30-40 people, some I knew, some I didn't know - all cops - standing there looking at me. They just looked at me and no one said a word. I had spent the last 35 minutes of the drive (which felt like 35 years) convincing myself that Kenneth was OK - that he *had* to be. I kept telling myself that they must send the commissioner or police and the county executive for all accidents - as a formality. I had myself so convinced because I had to do that to be OK - and the second I started to walk down that long driveway into the ER area and took one look at everyone's faces - no one said a word - I went from being convinced he was OK to being convinced he was gone.

I remember saying to Vinny - why is everyone just STARING at us? I figured they were just waiting to take me to someone who would tell me the worst news I would ever hear. I said - something along the lines of - "where is Kenneth??" or "what is going on? is he OK?" and two of my brother's friends who are cops just looked at each other, looked at me, and said "we'll take you to your parents". Those words, I will never forget - because not saying "don't worry, he's OK" meant they didn't know and/or he was not OK. I remember my legs just going to rubber - they felt like the couldn't even hold me up and I remember my heart racing while in the elevator. I kept hearing, in my mind, someone telling me what I feared most. Then, the elevator doors opened, I saw the county executive, the commissioner of police who I did not know at the time - I know Tom Suozzi from TV and my brother's graduation. And then - blank. That is where everything goes blank. I cannot remember, for the life of me, seeing my parents for the first time, seeing my brother for the first time, walking back to see him - being taken back by people -- all of these things I know took place but how and when - I have no idea. It is like my mind hit delete and I can't get any of that back. The next thing I remember wasn't until two days later. I don't even remember typing on here when I was made aware of the fact that it had been talked about on here... Nothing. And I have a phenomenal memory my family always makes fun of b/c I remember everything and the most specific details.

Now, here I am at home - he feels like he's a million miles away and I felt awful for leaving him because he looked like he knew that I was going. It is really hard for me because I feel guilty, sad and empty not being there. I just hope he comes home soon but I don't want him to do that until he is ready. Thankfully, his insurance is so great that they will never deny us anything -- and he'll stay there as long as the docs want him there and think he can still benefit from being there. Then, we'll see where we go next. We had to start thinking about making our house handicap accessible, doing construction to it to make it doable for him, etc. These are things you just never think about -- but, we don't know for sure since he is doing so well that maybe, just MAYBE, he won't need that? We don't know.

We do know that the most recent news we have rec'd from docs is the best news we could ask for. They are thrilled that he, in the past few days, has begun communicating with his hands -- thumbs up for yes, thumbs down for no! He is great about that and now we can really communicate better than ever before. I feel like the words are so very close -- and usually, with aphesia which is what the fact that he cannot speak is called -- but usually you communicate with hands first, because you are understanding what is being asked, and then the very next thing is being able to speak. We are very hopeful and so are the docs.

I apologize for being down - I know I have so much to be very thankful for. It is just hard on me personally because I feel so guilty - and I feel like he needs me and enjoys me being there so much that I feel awful I can't.

Re: Updates on DaniRella's family

Sorry to crash on your board, but you have nothing to apologize for. It is totally understandable that you'd feel down. While your brother certainly needs support from you and your entire family, I'm sure he also needs/wants for you to be doing the things you need to do for yourself. In a way, it may make him feel like things are returning more to normal by you returning to some of the "normal" things in your own life.

As always, you and your family are in my thoughts and prayers.

Re: Updates on DaniRella's family

****** September 18th ********

We have SOUNDS!

Well, we have had little "under your breath" sounds before -- but these are different because these are on command, controlled and done to mimic a therapist making the sounds. Now that he is really understanding what we are saying SO much better when the therapist asks him to make an "ooooooo" sound - he does it! This is a huge breakthrough!!!

So, he did "oooo" and "aaaaaah" and "eeeee" all on command, over and over again. So, they are continuing to work with him to start on WORDS. We are so happy - the docs are all so happy and we are still taking baby steps but they are in the right direction.

His frame of mind seems a lot better - he was having days where he seemed restless. Maybe he gets upset at the idea that his leg and arm still don't move the way they should? Even though they have improved SO much and continue to get better - he wants it to be right NOW. So, he will just stare at his right leg like "why can't you move like the other one does??" -- so, we'll get bouts of that but it doesn't last long and he is back to smiling, laughing and just looking very content.

He seemed so happy after he had the breakthrough with the sounds - like, I finally figured out how to do it! And he was relieved!! We are very happy.

So, a quick update but an update nonetheless. ...and a good one at that!

The very next step is real words!

Re: Updates on DaniRella's family

love your posts...and love to hear the great progress!

Re: Updates on DaniRella's family

---

Posted by jessica08bride

love your posts...and love to hear the great progress!

---

Re: Updates on DaniRella's family

****** October 1st ******

I hate the changing of months but at the same time I like it. I feel like - OK, this is the month and at the same time I feel like - omg another month that he is being robbed of. It is weird but the changing of the seasons and holidays bring about the same feelings.

It is difficult being home now - not only am I away from him and all he is doing (at least I do get to see him on weekends which makes me happy) but being around here - where people know me - I lost a lot of "anonymity" and I get asked a lot about Kenneth. Mostly, by strangers. It is beyond wonderful that ordinary people who don't know us care enough to ask, still, how he is and what his status is but at the same time - sometimes I'm just at the gym, or trying to get milk, or filling up my car at the gas station... and one person asking makes a lot of other people turn around and stare. You can see them trying to figure out who you are by what you are talking about. It is a very different feeling I'm just not used to. They all have the same questions: what are the doctors telling you? (nothing) is he talking yet? (not yet) why isn't he talking yet? do they know? (he has aphesia) will he recover fully? (we don't know) when is he going to come home?? (we don't know). it is hard saying the same things and answering the same questions -- and sometimes, how people are feeling can be written on their faces and they, sometimes, give me a look of worried. That sits with me a lot.

I have to, over a year later, do my video - I feel bad for my video/photog guy b/c here he is with all this stuff -- at the same time, my SIL who got married like TEN months after me is doing all of her stuff and it just makes me feel so lazy and irresponsible. Whenever we see family they ask her if she is working on her stuff - she says yes. Then, they look to me and ask where my album is and I don't have it. So, I'm starting small -- with my parents pushing me to do it constantly -- I'm going to work on just the video first. I need to put what I want in and what I want edited out, I need baby pics (got them last night), I need songs (did that yesterday) and that's it - so I'm almost all set. I just need to watch it to write what I want in and out. That's the problem... the part I'm dreading. I have not watched it since before Kenneth got hurt. I am starting to get upset right now just writing about it. Oyy - well, I'm going to give it a try. I think I'm better off just doing it alone, being upset and getting it over with. I had friends offer to watch it with me which was very nice but that will just be awkward for them as I have a meltdown in front of them. Maybe I'll surprise myself and be OK? Something tells me that won't be the case, however.

Getting back into school and not having this (everything w/ him) be the stuff that consumes 90% of my life is difficult. I'm not used to it. Getting back to work - same thing. My writing teacher this semester wants me to write about him... all I do is write about him? I guess I will just keep going! She wants me to take this -- this "diary" on here -- and edit it and make it into a book. I don't know about that. I feel like I would be A LOT more excited to write a book if I had this happy ending I'm hoping for. Then, I start to feel too positive and I wonder if I'm being naive.

This past weekend was very nice. He was overall pretty content. Lately, he has having moments of pain, aggitation and being uncomfortable. They feel it is a combo of things: his right side getting feeling back, being sensitive and it got very TIGHT b/c it is starting to get back movement a lot. Same thing happened with his left side and before we knew it - he had full movement. So, they are working with him to loosen those muscles so he is not as uncomfortable -- and so that they get work them out and get them going again. They gave him botox injections -- that helps loosen the muscles. My Dad said his legs are wrinkle free and look 10 years younger My Mom asked if she could have some too lol.

He is giving those thumbs up and thumbs down for everything. He is concentrating, when someone speaks, on them one on one -- so, he hears and understands EVERYTHING. He even picks up, now, when my Mom whispers or mouths something across the room about him or what he is doing to me. Sometimes, she'll say 'look - his right hand is moving like crazy' and now he knows and looks right at her and laughs like I KNOW you are talking about me! She laughs. We had a personal breakthrough -- Kenneth used to always make these faces with Christopher - when something silly was on TV or when Christopher would put on funny ring tones or music. He would make this face and raise his eyebrows... and laugh. Well, it seems like all of a sudden - he figured out how to do it again. And he does the SAME face to the SAME ring tones he always did. So, he remembers - I mean, the second we played them he laughs at the ones he used to find funny and will close the phone on the ones he hates haha. Just like before. It makes us feel so good to see that. We all start to cry at the same time - trying NOT to let Kenneth see and sometimes he does - and laughs.

He continues to make the sounds great and now we are getting a mixture of the sounds. He is also starting to say Dad -- Daaaaa. And starting to say Mom -- Maaaa. I keep saying, with Dad, that really he is trying to say DANIELLE He is writing very well -- he writes Chris (his son), Ken, Kenneth, Mom, Dad. He is writing with his left hand when he is not left handed so that is amazing. We play tic-tac-toe all the time and he is so good at it that most of the time he wins -- and then laughs He loves to win. He loves to watch sports -- is glued to the TV when they are on. He loves to watch Fox News -- typical Kenneth.

They are starting to get him to go to the bathroom on his own. He has a picture of a toilet on his wheelchair and on his bed so he points to it when he has to go and aides help him on the toilet and he goes! He did it on the FIRST try of this little "plan". There are still some times where we can't wait for an aide and he goes -- so then they need to change him like before but he is holding it, has control, knows what he is doing and is getting to the point where he can do that on his own. My brother is the type of person that bathroom stuff is the FIRST on his priority list to do independently lol. I know him - he would much prefer it to be done on his own.

We've come such a long way - and we still have a long way to go. I feel like we are at the half-way point and I hope that he is able to do everything else like he has done everything so far. All in all, I just want him to be happy and to come out of this saying: I am satisfied with the level of quality I am living, I am doing well, I am glad I survived this. My brother, and we used to talk about this, is the type that would say "if I have to live a life like 'that' and we all know what 'that' is -- I would rather be dead"... would he still feel that way after coming so close to death? Who knows but I don't want him to have to say - I can't believe this is my life. When it is all said and done I want him to say "I am one of the few lucky ones - I have my life back even though it was temporarily taken from me and I went through Hell - I have it back now"... It is all I think and worry about lately.

Re: Updates on DaniRella's family

i love how honest you are in your updates and i'm sure others in your situation would also feel the same way as you.
and it's a great coping mechanism to be able to let it all out by writing, and you're definitely doing an amazing job at it.

"My brother, and we used to talk about this, is the type that would say "if I have to live a life like 'that' and we all know what 'that' is -- I would rather be dead"... would he still feel that way after coming so close to death?"

you know? i always think about all this also. i work in a rehab center and we also have several patients who had unfortuante things happen and i always say that i would never want that either. but the truth is, you never really know unless you're in that situation. your brother will definitely have his ups and downs but with you and your family around to support him, he's bound to have more ups.

Re: Updates on DaniRella's family

Continued prayers for recovery!!!!

Re: Updates on DaniRella's family

Dani I love hearing all these stories about your brother! They're so inspirational!

I know how difficult it is dealing with someone with aphasia. My mom has it- she has for about 2 years and it does get better! You eventually learn their language and they learn ways to explain themselves to you. Its a rough process and takes ALOT of patience on everyone's part but it does get better!

I can recommend some tricks when he's up to it that have worked with my mom. Let me know.

Good luck with everything and as always- your family is in my thoughts and prayers!

Re: Updates on DaniRella's family

Re: Updates on DaniRella's family

Glad to hear about all of the wonderful progress. Hang in there!

Re: Updates on DaniRella's family

Continued prayers for Kenneth and the rest of your family.

I do believe you should write a book someday. You are such an amazing and honest writer.

Re: Updates on DaniRella's family

**** October 8th ****

Yesterday, October 7th, was my friend's birthday. He died when he was 20 years old - killed by a drunk driver. My husband and I did a walk at Farmingdale (for MADD) in his honor with his family the year before my brother got hurt. I never, ever thought that we would be back the following year for any other reason aside from walking in honor of my friend.

My friend's name was Kenneth also - but we called him Kenny. Everyone, pretty much, called him Kenny. So, for me - my brother was Kenneth and my friend was Kenny - always. It was strange to me when Kenneth got hurt - people in the media and people who did not know him started to refer to him as Kenny. I thought this was so odd - and then, when I would hear it - it started to make me smile. It was like, in a small way, maybe he was looking out for me - maybe this was his way of saying 'hi' during the most difficult time in my entire life... maybe he was trying to be there for me when all of a sudden the nightmare of what happened to him was happening to my brother - in a way...

I say, in a way because it hurts me so deeply that Kenny had no chance - he passed away instantly. It hurts me so much that - if Kenneth had a chance and could fight his way back - why couldn't he also?? Even though the situations are similar in so many ways - they are also very different. I often wonder how far Kenneth will really come - I believe that he can come all the way and be back 100% but then I start to think about what if he doesn't? Is it better to not be here at all than to be here in the kind of condition I see some of the people who are at Kessler everyday ? I just don't know that answer - but, what I do know is what losing someone like my friend (and a friend of my husband's) did to a family - I watched how much it hurt my friend's family - how much his mother was hurting for her only son, how much his sister misses her only brother. I watched for years all of that - always feeling so bad for them that I couldn't do more for them - to help them. I tried to give whatever support I could but nothing is ever enough -- nothing can ever bring him back.

When Kenneth got hurt I got calls from them offering their support - saying that they knew, more than anyone, what I was going through - and they were so right. No one that I knew in my life understood like they did - they have been there - only worse. It felt great to have that support - I never thought I would need it. I never thought this could happen to me. There, I said it. I was one of the few people who knew how horrible drunk driving can be, I knew how it can tear families apart and literally ruin their lives -- I saw the grief and devastation it caused -- I knew someone who was a victim of this -- and I STILL didn't think that it would come after my family. I was so naive - I was so aware and STILL so naive. Well, not anymore.

Happy Birthday in Heaven, Kenny. I thought about you yesterday - a lot...

"My old friend, this song's for you - because a few simple verses was the least that I could do to tell the world - that you were here... because the love and the laughter, will live on long after, all of the sadness and the tears. We'll meet again"

I have so much to thank you for - I know that. You are a wonderful person and come from an amazing family.

Re: Updates on DaniRella's family

I've been following your story and I have to say, you are one strong woman. I have been praying for your family and will continue to do so.

Your brother is lucky to have such an amazing support system.

Re: Updates on DaniRella's family

Hi Danielle, well, I stayed home from work today for Yom Kippur which I really didnt want to do because I would just be hanging around the house but I surely made good use of the day...I started this morning and have read all of you posts about your brother. I was overwhelmed with crying fits on almost each update. There is nothing to say more then others already have said but I do have to say for myself that your brother Kenneth will always be in my prayers as he continues his life and at this time when he still is fighting to get back to 100%. Your updates are remarkable, I am sitting on the edge of my seat to hear the next wonderful update!

Again, Danielle, you and your remarkable family, and your brother Kenneth will always be in my thoughts!

Message edited 10/10/2008 10:49:17 AM.

Re: Updates on DaniRella's family

******** October 22nd *********

I'm sorry it has been a while since the last update. This past weekend we had a family obligation on my husband's side to attend. I thought 'no big deal' - I'll skip a weekend and then just see him this coming weekend. Yeah, come Sunday evening I was miserable lol and my sister telling me how great he was doing and what a great weekend they were all having did not help! So, I packed an overnight bag - cleared my schedule - and went Monday morning. I stayed until Tuesday afternoon when I had to come back but it was so nice to spend time with him - I guess I'm just not ready, at this point, to go 7+ days without seeing him.

When I first got there he had just gotten back from Speech therapy and then Occupational therapy. He was having lunch and loving it (bowtie pasta with chicken!)... I walked in and he smiled SO big and waved to me. I waved back and gave him a high-five. Then, I let him finish his lunch because he usually has to eat quick before going to afternoon therapy (Physical). It is an exhausting day and it is like that five days a week - on the sixth day, Saturday, he has half a day of therapy. His only day off is Sunday.

I thought, in the beginning, that the more he is able to do - the easier it will be on all of us... my Mom, Dad, myself, the rest of our family - but especially the ones that are there everyday taking care of him. I always thought to myself - what if we couldn't be here? My Mom said we would just make it happen - that is the way we are. But a lot of people aren't that way and we see MOST patients alone almost all the time. Not only does being there help boost his spirits - it helps his progress SO MUCH. Turns out - the more he is able to do - the more work, in some cases, it is for us. Some days are exhausting..........

Now, lately, he has been *determined* to go to the bathroom on his own - I know this is a subject that - well, who really wants to talk about this? lol but in reality this is something that we all do everyday - and for someone who is injured, this is something they have to gain independence with. Normally, he wears an adult pair of underwear and would have movements in there - that is the norm when you can't get up on your own and you can't yet use your right side. Also, of course, when the weight restriction was on for his pelvis - he couldn't put weight on that side at all. Once that was lifted, they started to slowly get some strength back in him - started trying to stand/walk and have been working to improve that strength since. Then next step is to start to have him signal to us when he has to go to the bathroom -- and we would help him get into the bathroom and on a special seat that sits over the toilet for an injured person. It is a kimode, basically. This was something they were going to "try" slowly - Well, Kenneth was DETERMINED do start doing this the normal way - getting in there and going. They wanted him to just do it with movements but almost immediately he started holding his urine - for HOURS - now, he can't speak and wears an external catheder so if he wants to pee - it just goes down a tube and into a bag around his ankle - no harm, no foul but he will NOT do it. He will signal, even though he can't talk, any way that he can to tell us he has to go. At one point, he (with one good arm) wheeled his wheelchair over to the bathroom and pointed at it. Another time he just pointed to his pants like HELLO!!! hhahaa. Then, one day, when my Mom was going to take him to therapy he put his hand on the wheel and would NOT let her take him out of his room -- she thought he was being stubborn but since he is NEVER like that and NEVER gives us a problem or doesn't want to go to therapy we thought deeper -- turns out he had to go to the bathroom and didn't want to leave the room until he went.

We are amazed at this. It is not something people want to talk/hear about - I know. But it is a part of his healing and it is a part of our life right now. I would be sugar-coating it all if I left this part out and - more than anything - I would be leaving out a HUGE milestone and a HUGE hurdle that Kenneth overcame.

This is our reality - my Mom and I had (when I'm not there it is my Mom and Dad) to take Kenneth in the bathroom, after HE gave us the sign that he had to go to the bathroom, and we needed to lift him up (185+ pounds) and he helps us by putting his good arm around our shoulders -- and we put him on the kimode - obviously, I have to help him take his pants down. I know, who wants to do that? I'm his sister -- but if I don't - who will? When you are faced with something like this you don't question - you just DO. I thought to myself yesterday - I wonder if people even realize that this is the kind of stuff we have to do everyday? It is not the kind of thing people think about - and when you say it they get VERY uncomfortable. Hey, we all pee and we all poop, right? I'm so proud and so amazed that he is this determined to do this on his own - and since they started to "try" and see if he could do this on his own a week and a half ago he has not gone in his pants ONCE... and he can - I mean, the diaper is there, the urine tube is there, no harm/no foul but he will NOT do it. He waits and waits until he can finally communicate to us that he has to. So, we started on a schedule... he goes into the bathroom to try and go in the morning, after his therapy, after lunch and then after his last therapy, then again after dinner and once before bed. It works - if he has to go, he goes, if he doesn't - he doesn't. That way there is no guess work and no him trying to tell us for 30 minutes that he has to go. Sometimes, it is not that obvious and we don't realize and poor thing he is holding it. But it is a lot of lifting up and down and a lot of footwork that goes into it -- by the end of the day, you are exhausted.

The doctors are really blown away by this - that the desire is there for him to get back to normal levels of functioning - things you and I do. He wants to do it on his own and that is SO Kenneth.

As for talking - we have lots of sounds - more than ever before! - and now, they are sounding more and more like words - or like he is trying to form words. He just looks at us like WHY can't I just SAY it?? And sometimes I feel like he is just going to come right out and say something but the level of aproxia and aphesia that he has - it is difficult - very difficult. You know what you want to do, you just don't know HOW to do it. And until you figure it out - it is frustrating. He tries so hard - you can see it. When we get discouraged the docs remind us that he WILL talk - it just takes a long time. So, that makes us feel better.

We have tons of facial expressions - a lot of which really tell how he is feeling and we are able to communicate through them and hand gestures -- he will give us thumbs up/down for everything which helps and he now does the sign language symbol for "I love you" that way - he can say it back to us when we verbally say it to him. When I left yesterday he gave me a kiss on the cheek, I said "I love you" and he signed it back. It is a nice thing to have this little bit of communicating.

He had a haircut yesterday. A woman comes in and gives the patients haircuts every other week - you have to sign up and pay fifteen dollars. He was very happy b/c he is the type that enjoys being clean cut and everything. We wheeled him into a large bathroom that she uses -- she (the stylist) put him in front of the mirror and put the typical haircutter's cloak over him... He had his wrist splint on his right hand (that helps keep it the right way until he gets full motion back to it) -- but he hates wearing it and 90% of the time tolerates it but when he wants to give us the business he will go to take it off with his good hand and look at us for a reaction -- then laugh. Well, now that the haircutter gown was on him - we couldn't see his hands at all. And I see him "blousing" the gown so that you don't really see what he is doing under there. Then, I notice that he has this silly grin on -- and I'm thinking what is he up to?? Then, I hear the velcro RIP -- and I realize that he is taking off the splint b/c we can't see what he is doing!!!! I said KENNETH! lol and he LAUGHED out loud and I went over - looked under the gown and he had the whole thing off. I told him I was going to tell his therapist on him. He thought he was so funny - and he was so happy with himself for being so darn clever.

He loves to out-smart us. Another thing he loves lately is Law and Order. I mean, he is GLUED to it for the entire hour and will only look around the room to try and communicate with you during commercials. He surfs through the channels until he finds one and sure enough, one is almost always on! He has been doing this for a week - everyday after his therapy - that is what he wants to watch. If you watch it with him when something "big" happens he'll look at you and give you a look like "wow" haha. He understands everything. I saw a bumper sticker recently that said - Aphesia: loss of speech, not loss of intellect. And on Oprah yesterday they had stroke victims - similar effects to brain injury and there was someone on that said - I was in there, totally understanding everything, but unable to speak and express -- at least it is only temporary even though it feels like it has been FOREVER.

He looks SO good I can't even believe it -- in the beginning when we first came to Kessler we thought how great he looked because he wasn't hooked up to every tube and machine on earth -- then, as time went on at Kessler he got better and better -- built muscle mass, gained healthy weight back b/c he was painfully thin... his hair grew in and finally covered the "road map" of scars on his head (as my Mom calls it) -- he was looking better and better. Now, we look back at all those "great" pictures from when we thought he looked so good and we are like WOW he really didn't look that good! LOL it was good to us then -- and it was better than where he came from but NOW -- *now* he really REALLY looks good! hahaha it is so weird but that is what it is like. We look at pics and go "wow, and we thought THAT was great - look at him now!" so, it is nice that we continue to be more and more amazed by him.

The docs are telling us that there is no end in sight for him - they have not even begun HALF of the treatments they are going to do for him -- and they have so much more they can help him with. So, it is looking like we are going to be spending the holidays at Kessler. Hey, I'm just glad that his insurance is good enough that they will keep him there as long as he needs to be there -- where a lot of people get the boot. They tell us, all the time, we need him to get back to a normal function of life -- a quality life and we will not stop until he's there. Because of his determination - there is no reason why he can't overcome everything and get to that place. I believe that - and I totally believe in him.

He is the bionic man! A friend of his from the police dept. said this once b/c he has a number of titanium rods in his pelvis -- and when he had the surgery his friend said he is like the bionic man. So, she found a shirt online (an authentic 1970's vintage tee) that has "The Six Million Dollar Man" on it --- it is so cool! She brought it to him the last time she visited and he loves it - wears it all the time. I said, if you ever get a look at his medical bills - you'd realize he is the six million dollar man in more ways than one! Thank GOD we have that kind of care - thank God he has that kind of insurance. But he totally lives up to that title - he is super human!

Re: Updates on DaniRella's family

Hi!!! I have been checking everyday back and havent seen any posts, I was going to FM to see if you and everything was okay. This was a wonderful news! Very funny about the brace and the velcro. Always in my prayers!

Re: Updates on DaniRella's family

Glad to hear he is doing so well!!! My prayers are with you and your family.

Re: Updates on DaniRella's family

**** October 29th ****

In the past few days we have acquired nodding yes and shaking his head no!! So, whenever he agrees with something or wants to say "yes" to it he can either do thumbs up OR nod in agreement. When he wants to communicate "no" he either gives a thumbs down or shakes his head!

We also have learned the "OK" symbol -- so, now with his hands he symbols "OK" to us when we ask him how he is doing/feeling. He sticks his tongue out on command which seems so ordinary but it is actually a really hard thing to do and they were thrilled he can do that -- that is a big sign that speech is in his hopefully NEAR future! He also closes his eyes on command and keeps them closed -- sometimes he'll pretend he is sleeping and then laugh. He can also wink now -- so he'll wink at us from time to time.

At one point, we were doing the 1, 2, 3, 4, 5's with him -- with his fingers -- holding up the numbers. I would do it, then he would do it, then we would do the sign for "I love you" and then we would do "OK" and all sorts of different gestures he has learned --- So, all of a sudden, as he is going back and fourth between numbers and different symbols -- there was the middle finger. And he looked at it like "oops" and kind of looked at me and I went "hey! Kenneth!" and he just laughed out loud! Both of us realizing what he did and that it is NOT appropriate. It was just funny how he did it w/o realizing and then once it was up he was at it haha!

There is an article in New Jersey Monthly that rates top doctors in the State and writes about different medical situations. They did a story on Kenneth's two head doctors -- his main Doctor is Dr. Jonathan Fellus (the head doc at Kessler) and his associate is Dr. Philip De Fina. They are amazing and Kenneth really likes them - of course, we LOVE them as they work everyday to bring a little bit more of Kenneth out to the world and back to us.

To be able to truthfully say that we see improvements, even if they are small, every single day is an amazing thing - we are very fortunate. It is the honest to God truth -- every single day, just about, there is something that Kenneth can do that he was unable to do the day before.

I'll give you guys a link to the article and there is a picture you can click on the enlarge of Dr. Fellus -- with the bowtie. He was quite an interesting man - you can't even wrap your mind around just how BRILLIANT this man is - and he has an eccentric side that I kind of love about him. Kenneth finds him amusing at times - I think because of the bowtie and his animated features. When he comes in to visit him he'll talk directly to him - never about him like he is not there. He is kind and very gentle. He calls him Officer Baribault most of the time. One day when Kenneth was giving my Mom a hard time -- he likes to tease her -- and he put his hand in front of his mouth and wouldn't take his medicine - something he never does. He is always very cooperative but wanted to tease her on this particular day. So, he would cover his mouth and laugh! Then, look at her. So, Dr. Fellus happened to walk by -- it was only a two minute thing -- and he came in and said "Officer Baribault! You have to take your medicine!" hahaha and the second Kenneth got a reaction out of my Mom he happily took his hand down and accepted his medicine - like always. He just wanted to get a rise out of her - typical. But Dr. Fellus just has a way about him. He took out his PBA cards one day -- showed them to my brother and Kenneth thought it was the funniest thing. Dr. Fellus said he gave him a look like "yeah OK, license and registration please!" haha!

OK - LINK:
NJ MONTHLY - DR. FELLUS AND BRAIN INJURY

Here are some highlights from the article where Dr. Fellus and Dr. De Fina talk about TBI and some cases -- people need to be aware of the devastation that TBI's cause. Some of the cases you will read about - well, they are 10 times worse than Kenneth - if you can even imagine. That is why I'm so thankful he is in as good condition as he is -- because SO many people are not.

****As candidates for science’s final frontier, the bottom of the ocean and intergalactic space have a lot going for them. But neither packs as much extraordinary complexity and mystery into as small a space as the gelatinous, three-pound mass we call the human brain.

Containing billions of nerve cells transmitting electrical and chemical signals at up to 200 miles per hour, the brain also accommodates about a trillion supporting (or glial) cells, as well as glands essential to the regulation of hunger, thirst, growth, memory, sexual response, waking, sleeping, and sensory experience.

Enclosed in the impossible-to-misplace breadbox known as the skull, the brain is well armored against minor assaults. But strong as it is, the skull is no match for the impact of auto crashes, full-speed helmet-to-helmet collisions on a football field, or the blast wave of a roadside bomb.

We know much more about traumatic brain injury (TBI)—and the brain itself—than we did a century ago. But our ability to undo brain trauma caused by external forces, internal bleeding, or oxygen deprivation is still limited.

“Brain injury is a crapshoot,” admits Dr. Jonathan Fellus, director of brain injury services at Kessler Institute of Rehabilitation in West Orange. “A spinal-cord injury is a spinal-cord injury,” he explains, “and 99 percent of the time you know what you’re going to end up with from the get-go.”

TBI, on the other hand, might result in coma, minimal consciousness, a vegetative state, or a spontaneous recovery. At present, treatment of brain injuries is neither systematized nor standardized. But researchers, neuroscientists, and doctors—many of them, as it happens, working in the Garden State—are beginning to improve the odds for even the most severely injured.

The revolution in TBI treatment began in the 1990s, which Congress officially dubbed the Decade of the Brain. “When I was a neuropsychology intern in 1980, neurosurgery had very high mortality and morbidity rates,” says Dr. Philip De Fina, founder of the International Brain Research Foundation (IBRF), a think tank with headquarters in Edison. Government initiatives and funding helped spur advances in neurosurgery, including laser-guided microsurgical techniques. “More people are now surviving brain injuries, which means we’re starting to make breakthroughs in treating them, and diagnosing them prior to treatment,” De Fina says.

One difficulty of diagnosing the extent of a brain injury—or even whether the brain has been traumatized—is that symptoms may manifest themselves over time and are not always present in the immediate aftermath of an accident or battlefield incident. Even the determination of a patient’s degree of consciousness—once considered fairly straightforward—is being recognized as a gray-matter gray area.



The war in Iraq also has led to progress in the diagnosis and treatment of TBI. Improved armor and field expertise, as well as advances in rehabilitation, have allowed more soldiers to survive head injuries that would have killed them in previous conflicts. (In fact, doctors are calling TBI the war’s signature injury.)
Staff Sergeant Juan Roldan is a case in point. Assigned to a security detail in Sadr City, he saw a spike in sectarian violence in the days leading up to Saddam Hussein’s scheduled execution on December 30, 2006. On the night of December 29, he was in command of a Humvee.

“We rolled out, and I was in the last vehicle,” he remembers. “We got into some serious stuff, and out of nowhere the explosion came.” The source of the blast was a powerful improvised explosive device, which blew him 270 yards from the passenger seat of the truck. When a fellow sergeant found him, one of his legs was gone and the other, Roldan says, was “hanging by two threads.” His rescuer applied tourniquets to each leg, threw Roldan into another Humvee, and raced to the casualty collection point.

“I died in Iraq,” Roldan says, and he’s not speaking metaphorically. He lost more than 60 percent of his blood, and by the time he arrived at the collection point, his heart had stopped beating. He had also suffered spinal cord damage, pelvic trauma, and severe traumatic brain injury.

After being stabilized in Iraq, Roldan was transferred to Germany and then to Walter Reed Army Medical Center in Washington, D.C. Roldan began to improve after he was weaned from an excess of pain medications. But his doctors suspected that, given the right environment, he could make a fuller recovery.

They contacted Jonathan Fellus, who is unlikely to forget the phone conversation: “Walter Reed called and said, ‘We want to send you this young man who was exposed to an IED, had a bilateral trifemoral amputation, severe traumatic brain injury, complete spinal cord injury [meaning no motion or sensation below the point of injury], an open wound in his back, and a colostomy bag. And he’s 22.’”

There was a time when a doctor might see a case as severe as Roldan’s once in a career. Today, cases like his have become almost commonplace. Often the most challenging ones find their way to doctors and therapists in the Garden State.

“The worst things that can happen to the brain will ultimately end up here,” says Fellus of the Kessler Institute. Nattily dressed in pink shirt and floral bowtie, he doesn’t look like anybody’s idea of a mad scientist, though that’s exactly how he describes himself. He works hands-on with patients to restore brain function using an individualized approach he describes as “creative, aggressive, no holds barred—a kaleidoscope of interventions to assault the injury from all sides.”

The treatment protocol he employs was developed in partnership with the International Brain Research Foundation under De Fina’s leadership. “The brain is essentially electrochemical, so we use both electrical and chemical interventions,” De Fina explains. “We take medications from many different neurological disorders, including psychiatric disorders like depression and anxiety, conditions like Parkinson’s, and so on, and we use electrical stimulation techniques that are applied externally, so that they’re noninvasive.”
In 2005, De Fina and his colleagues applied the protocol to a deeply comatose patient and succeeded in reviving him. This was, of course, the result they’d been hoping for, but they were still somewhat astonished about actually pulling it off. “It was an amazing feat,” he says.

It also represented an epiphany for De Fina, who realized that there was no organization devoted specifically to working with victims of severe brain injury or to developing advanced techniques to help them recover. That same year, he founded the IBRF to marshall the world’s top neuroscientists and research facilities to advance cutting-edge brain research.

In the past four years, the IBRF, working with the Kessler Institute, has awakened 27 of 33 comatose patients. (Its most famous patient may be Steven Domalewski, the Wayne Little League pitcher who was hit in the chest by a line drive in 2006, suffered cardiac arrest, fell into a coma, and was revived three months later.) What is striking about the IBRF protocol is that it draws from other medical specialties as well as from approaches that seem decidedly New Age.

However promising these new treatments are, progress for many patients remains elusive. Christopher Hammett survived a fourteen-month tour of duty in Iraq without injury, but the West Point cadet barely survived his encounter with an SUV on a Maryland highway. In July 2007, he and two friends in a Honda Accord were slowing down for an exit when they were rear-ended by a Chevy Suburban going 60 miles an hour.

The Suburban pushed the Accord 110 feet across the highway; its impact caused Hammett’s head to accelerate and decelerate violently, resulting in what’s known as a diffused head injury. In a few seconds, millions of nerve endings in his brain were torn and his brain was twisted on an axis. He went into a deep coma. Doctors informed his mother, Diane Davidson, that the 26-year-old wasn’t likely to make it past surgery. But Hammett’s body rallied. Last March, just before Easter, he was transferred to JFK Johnson Rehab in Edison, his mother having convinced the military that he would fare better there than in the nursing home they had assigned him to.

A year later, his prognosis is cloudy. “Chris is borderline,” says Dr. Caroline McCagg, who handles his case. “I hate the word vegetative. It could be said that he is minimally conscious.” Davidson is convinced she sees signs of progress. “I feel like he responds, like he knows I’m there,” she says. “Today, when the therapist got him out of bed, she told him to lift his fingers, and it went very slowly, but he did it.”
No one has given up on Hammett. Since August he has received hyperbaric oxygen therapy—oxygen delivered at greater than atmospheric pressure—which doctors hope will rouse dormant brain cells. “There’s so much more to be done,” his mother says, and she might well be describing the still-nascent fight to conquer brain injury.

There is a growing number of hard-won victories in that fight—including the likes of Juan Roldan. When he arrived at Kessler, doctors prescribed several medications designed to enhance memory and boost cognition, and helped wean him from pain meds, regain his powers of speech and hearing, and move toward his goal of living independently. Today, he’s working to get behind the wheel of a car. “I’ve proved to myself what I’m capable of,” he says.

Roldan’s recovery may well be attributable to the willingness of doctors like Fellus to treat brain injury with courage and creativity. While the basics of treatment are starting to become systematized, the nuances still demand the intestinal fortitude to act on hunch and instinct. “You can get a pretty picture anywhere,” Fellus says. “I’m coloring outside the lines every day.” ********

Re: Updates on DaniRella's family

I love hearing these positive updates. I'm so happy that your brother improves everyday. It must help keep your family optomisitic.

I will continue to pray for his full recovery!!

Re: Updates on DaniRella's family

same here; glad he's in such good hands. prayers continue for his recovery

Re: Updates on DaniRella's family

Kenneth and your family are in my prayers all day and everyday. Thank you for keeping us updated. So glad he's doing better each day.

Re: Updates on DaniRella's family

Dani, I read all 11 pages of this thread yesterday, and cried numerous times. I am so glad he is doing better everyday and have confidence he will be back to 100% soon. I will keep you all in my prayers.