Re: Updates on DaniRella's family

I am so glad to hear that he is doing better.
Hang in there. It will take time, put it will all be fine in the future.

Re: Updates on DaniRella's family

Keep em' coming!

I'm glad the fundraiser was such a huge success and wow about chaminade, amazing

Re: Updates on DaniRella's family

DaniRella, you looked great on tv!

Re: Updates on DaniRella's family

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Posted by DCLM726

I am so glad that hes making such great progress. I am a history teacher..if you need any books to read with him, I can give you some.

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aww - thats so nice to offer!!!

he loves: teddy roosevelt, ronald reagan, abe lincoln, thomas jefferson -- that's all i can think of at the moment. do you have anything about them? he is pretty conservative lol. my brother sees only black and white in most cases haha.

Re: Updates on DaniRella's family

****** August 23rd ******

No words yet - but noises and he is mouthing words/sounds. The speech person started off with that. Getting any type of noise out - sounds JUST like his voice, no different! Then, mouthing 'ooh' and 'ahh' and 'eee' -- and working on breathing out when opening his mouth, etc. That is how they begin to get people to talk again.

I am hoping for THIS week. My husband has come to stay with me this coming week b/c my guilt ridden parents and sister are taking my nephew on a cruise. This was something they had booked WAY before the accident and they wouldn't go BUT they are going with 8 other couples - all close family friends. My parents are the ones who initiated all of them going on the cruise so they feel obligated to go b/c of them. Knowing Vinny and I will be with Kenneth the whole time makes them feel better but they are still a little uneasy. My nephew, however, will love it and I think it may be just what he - and everyone else - needs after all this stress!

So, they leave tomorrow morning and it's just me, Vin and Kenneth -- Hopefully, he'll speak so when they come back he can say 'hi'.

This is probably the biggest obstacle for him. People don't realize how hard it is to do something so simple as speak... especially when the part of your brain that was hit hardest controls that. It just takes the brain a long time to reconnect, find the right nerves and retrain itself.

At therapy, he continues to SAIL... they have increased the difficulty of all his puzzles and projects. They had him on the bike the other day -- with his hands and good foot peddling away. He looked like he loved it. Just one more week and he can put weight on the pelvis and start to walk again. I can't believe they are talking about having him go on un the treadmill ASAP! I'll
D I E when I see him on a treadmill!!! He has begun drinking out of a straw - I don't know if I mentioned that already. He was having a hard time - got it half way up the straw and then one day he mastered it! It makes it a lot easier for him to drink now. His left leg is moving like CRAZY, and in the past few days the RIGHT leg is moving too!! They feel that the right arm is coming back -- from the shoulder down to his hand -- a little each day. It is going to take extra time (it is common for the legs to come back before the arms)... so he has his left arm which is excellent and is starting to get back movement in BOTH legs!!!! We are thrilled.

He was upgraded to a better wheelchair -- one that requires you to be stronger, able to sit up better, etc -- It doesn't give as much support and help -- he has done great with it so he was ready for the upgrade. They told us that was a big step.

He has done the entire alphabet with block letters, has done numbers 1-25 over and over no problem, has spelled his whole name --- and physically, is much stronger and his muscles all feel like they have their strength back a little - just need to get to full movement in the arm and legs - moreso on the right side, that's all.

I play Van Halen's 'Right Now' for Kenneth to get him pumped for therapy -- and one line always gets me -- 'The more you get, the more you want.' ... It is so true. You don't mean to get greedy but I want him to have his life back and I don't think that is too much to ask for.

At first, all you want is for them to live, then, well if he could eat on his own and sit up on his own that would be great too, and then if he could just walk so his quality of life will be better -- and if he could speak and think like he did before -- I hope he can go back to work, etc. Then, before you know it you are like wow I'm asking for everything -- what happened to I don't care about anything - just don't take him from me??

Re: Updates on DaniRella's family

wow awesome!! so glad to hear all the great progress...one more week to weight bearing!!! wooohoooooo!!!!!!!!

Re: Updates on DaniRella's family

******** September 5th *********

Kenneth, during his therapy session, was able to stand up and take steps today. and I MISSED it because of stupid social security but that's a whole different story. Anyway, I wanted to wait on the updates for a while until I had something big to report - even though, to us, everything he does is big. But, I wanted to hold off until I had either words or steps...

Steps came first. His weight bearing resctrictions were lifted in the beginning of the week and his ortho doc cleared him and his pelvis for full weight bearing. So, before this point therapists could not even TRY any type of standing or walking with him. Now that his pelvis has healed they can! During the past two weeks to prepare for when the restrictions would be lifted his therapists have been working out his torso, arms, and entire mid section to get it stronger -- because we don't realize how much it takes for us to stand on our own - strength wise. Now that he has been eating three solid meals a day for a while (and they are nutritious meals) he has become so much stronger.

My mom told me that this afternoon his therapist, Erin, was looking for her - when she finally found my mom she told her to come to the gym right away because Ken was WALKING. So, my mom and her went into the gym to find Kenneth standing up (with two people supervising) in a special brace that they have -- it does not help you stand, it just protects you if you fall and keeps you from hurting yourself if you try to walk/stand and end up going down.

...And there he was - all six feet of him - standing up in the gym with his good leg (the left one) that now moves ALMOST back to normal/full function -- that has only come back in the last two weeks!!! which is remarkable. So, there he was using his good leg to walk - puts his foot forward and then kind of dragging the right leg which still doesn't really have much movement. They feel that movement will come back - it will take time. The right side is that way b/c the left side of the brain was hurt -- so it affects the opposite.

So, the therapists would help move his right leg along for him when it got rather difficult to almost drag it -- but, basically, he was taking his first steps since everything happened!! My mom was in complete shock until Kenneth looked up at her - standing up for the first time - and smiled EAR TO EAR. Then, my mom went from shock to TEARS. She said it was like he is SO happy that he can do such a normal day-to-day thing like taking a few steps that he was THRILLED and you could see it all over his face like 'wow, i'm doing this - i AM getting better and i CAN do this' -- it was so uplifting for him - he was just delighted the entire day.

My mom called me crying and I asked what was wrong, worried, and she said 'Kenneth walked' and I said - WHY ARE YOU CRYING?!! LOL!!! She said - because he was SO happy that he could do it. All of the therapists said this was amazing - that he was able to stand up, on his own, take a few steps, even with a bum (for the time being) right leg -- they are amazed at him... on the first try, no less! People that really know Kenneth are not surprised. It is, in a way, surprising because all the 'odds' are against him but at the same time - the way he is - this is just par for the course.

So, Vinny and I go back to New Jersey early tomorrow morning - I missed him walking for the first time because I had to go to social security to clear up their mistake so that I can get the financial aid processed for college. I am MIFFED but what can you do?

I'm just thrilled he was able to do this.

...and I am hoping my next update is telling everyone how he SPOKE.

Speaking of speaking, lol - we have had A LOT more noises - grunts, sighs, etc. And we hear his voice and it sounds perfect -- the speech person said he is mouthing the words and breathing correctly -- just needs to merge that with the sound. It takes time - that is the hardest thing b/c it is very complex. It takes over 70 muscles to form ONE syllable. So, time will tell - we just need to be patient but it helps that the therapists keep saying how ahead of schedule he is and how remarkable his recovery has been, etc. in comparison to others or the 'norm'.

A good day!

Re: Updates on DaniRella's family

That is great news!!!!!
I am so sorry you missed it, damn social security!

It's progress and that is great!!!

Tons of and for him and your entire family!

Re: Updates on DaniRella's family

SUCH great news Danielle! God is so good!

Re: Updates on DaniRella's family

I'm glad to hear that he's walking and doing better! It's great that he has such a supportive family that loves him!

Re: Updates on DaniRella's family

It is so nice to hear that Kenneth is getting better. Take some time out for you and your husband and enjoy your anniversary today

Re: Updates on DaniRella's family

Great news!

Re: Updates on DaniRella's family

wow!!! i am AMAZED by how much your brother has progressed. and dont worry about not seeing him walk!!, next time you'll be able to see him run!

Re: Updates on DaniRella's family

SUCH great news!!!! That's a huge accomplishment!

Re: Updates on DaniRella's family

****** September 10th *******

I should have updated last night but I was so tired!! Yesterday was my one year wedding anniversary with Vinny - I can't believe that just one year ago yesterday we were all enjoying such a happy day - my brother and nephew, sister, myself, Vin and my parents all had such a great time - definitely one of the best day's of our lives. Everything changed so much on May 18th and since that day I think about my wedding day with more of an empty and sad feeling -- I never thought back about my wedding in a sad way until Kenneth got hurt. I didn't 'miss' it like some people do -- I enjoyed it so much then that I was content when it was over. Once Kenneth got hurt, however, I now think about it as the way life 'once was' and I miss our old life so much that if I think about it too long I just start to cry. I still have not been able to watch my video since Kenneth was hurt -- I just can't do it. I also have been unable to go about making my album or looking at my proofs. One day.

Yesterday was special because Nassau County had an awards ceremony for brave civilians who helped people during the past year. One of those brave people honored was our angel firefighter Phil... He was given a nice plaque and it was very emotional for us. My parents, sister, Christopher, myself and Vinny were there. It made me happy to have something like that on the night of our anniversary otherwise I think I would have been a little down -- but I wasn't because it was great to go and do something positive. We did go out for my husband's birthday which i had posted I was having a tough time with getting in the frame of mind for -- but we did it and he was happy which made me happy... and we will be going out soon for our anniversary - things are kind of hectic now b/c Vinny is in the middle of his master's program and just started student teaching. So, he is taking six grad classes, student teaching twice a week AND works full-time on top of that at the car wash-- umm, yeah he is busy! He did find time, though, to get me a beautiful ring for our one year anniversary which was so nice and we are going away in December (when things will be much better with Kenneth, I'm sure) and then I'll be really excited to go.

Before we went to the ceremony yesterday we got FANTASTIC news!!!!! One of Kenneth's docs at Kessler came in to tell us about the latest brain scan test they did -- it is a special test and Kenneth wears this weird hat for 20 minutes and they measure all this stuff and then it comes out with a bunch of pictures of his head with colors on it -- then, they let us know what all the data means. The first one of these tests he had was at NUMC on july 4th of all days -- Then, he had one done about a week after being at Kessler -- during our initial meeting with docs they told us that the improvement was 'dramatic' (I wrote about that above - sometime in the end of July) so we were THRILLED at that time. Then, they decided to give him a scan once every two weeks or so -- he has had a couple since then and we didn't hear anything about them. We figured the 'dramatic' improvement days are over and now maybe each scan is either staying the same or improving just a little. Well, we got news yesterday that the last scan done was 'put together' with the other scans done since the 'dramatic' one --- and, AGAIN showed 'remarkable' improvement!!!!!! The docs are literally THRILLED and they even told us that they haven't even begun some of the treatment options they have up their sleeves for Kenneth -- they have to wait to see how he is doing before they can go ahead with things -- you have to do different treatments at different stages of recovery. These are very, as I like to call them, 'realistic' doctors -- they tell you, without sugar-coating, the TRUTH about your situation no matter what. So, for them to be 'jumping out of their suits' as I put it -- was AMAZING. So, my mom was crying -- we all could not believe it. We see the improvement in Ken ourselves but to actually know that things are getting better on the inside, too, means SO much more!!!

This is one of the main reasons we chose Kessler - because they are the most innovative and state of the art facility for brain injury in the country -- and this particular type of scan they did -- they are the only place in the world that has this type of scan -- and the same goes for a lot of their treatment plans, devices, etc. We are very lucky that we were able to get Kenneth in here and blessed that they requested him.

So, my parents were hugging the docs after that news hahaha! We were all so thrilled and they feel that speech, which is what is going to take the longest with Kenneth because it is a very complex thing -- but they feel it is very close and right around the corner. Once we get that initial word - the flood gates will open, I'm sure. So, we actually hear his voice when he laughs now!!! I'm sure it will continue to come out more and more.

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

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Posted by What

Dani, that's amazing.

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

this really is an encouraging & inspiring story.

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you know, you are like the fifth person to tell me this. i've been keeping not only a journal on here but a written one as well and one of my professor's told me to really keep on top of it -- the only problem: i really don't know how to write that well lol i can 'fake it' for school purposes but i have NEVER considered myself good enough to be able to write something real.

can't i just give what i've written to someone who can make it all perfect? lol lol.

thank you

i am going to ask my professor again about it - he told me his good friend is a publisher.

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!