Re: Updates on DaniRella's family

So glad to hear he is doing well!!

Re: Updates on DaniRella's family

its incredible to read these updates on kenneth and to hear how far he's coming so quickly!!! so many blessings!!!!

its interesting reading you talk about the swallowing test ... I had just watched videos of this test and what dysphagia looks like internally in my cognitive and affective bases class a few wks ago. we had a speech pathologist come in from magee rehab in PA. great to hear he's gaining strength now that he's able to eat more! hope he just continues to get stronger and stronger!

continued prayers!

Message edited 8/11/2008 9:33:53 PM.

Re: Updates on DaniRella's family

**** August 13th ****

Kenneth was finally able to drink out of a straw. It was weird - he could take the cup with his left hand and drink from it, take the fork with his left hand and eat from it and even get the liquid half way up the straw but he was having a hard time doing it all the way. The docs told me that is actually a very tough thing that we do everyday and it seems so easy. Well, finally, he DID IT today - drank with it like normal and he acts, so casually, like he has been able to do it all along lol you would never know - by watching him drink from the straw - that just yesterday he could NOT do it. That is the most amazing thing about our brains - they can learn things again, learn new things, parts of the brain that are hurt can get "helped out" by other parts of the brain -- and all of a sudden, something that you could not do previously will just CLICK and you can do it! And then, it is like your brain remembers and has it down pat -- and from then on you are good to go with that particular behavior. That is the most unbelievable thing about the human brain. It continues to amaze me, right before my very eyes, each and every day.

I came home from Kessler last night because we had a press conference I was asked to attend this afternoon. MADD and the PBA organized it because they wanted to announce the fundraiser again and people want an update on Kenneth. I'm so thankful that, three months later, people still care enough about Kenneth to ask how he is doing. All too often these stories vanish from the headlines and people move on with their lives but with Kenneth - it is ASTONISHING how much people are dedicated to him and his well being. It gives us so much support. Here is the video from Newsday but News12 was there, Channel 2, Channel 7, Channel 11 and a few others - I'm not sure how many.

It is hard to describe, in five minutes, all we have been through in the past four weeks (at rehab) and three months in total. You try to give them an idea without making it like he is all back to normal and doing fine - because, in reality, he still has a LONG road ahead of him and people should know that. I'm excited for tomorrow because I think it'll be nice for my parents to see how much people care for Kenneth. I'll be sure to give updates on it!! I made a collage tonight with pics of him -- I urge everyone who wants to come on down to do so!!!!!! I would love to see you, meet you and thank you all. I also made a sign-in book so he can see how many people care for him when he is all better and can communicate.

Here's the video:CLICK HERE FOR STORY AND VIDEO

Message edited 8/13/2008 11:03:17 PM.

Re: Updates on DaniRella's family

It's so amazing the little things we take for granted, like just being able to sip through a straw! Continued prayers for you & your family Danielle. I love reading your posts to see how Ken has progressed and also b/c we forget everyday how precious life is. Reading everything that you all have been through should serve as a reminder to everyone to cherish EVERY moment with your loved ones.

He has a long road ahead of him, but it's amazing how far he's already come!! He was blessed with an amazing family!!

Re: Updates on DaniRella's family

******* August 17th *******

Kenneth had a great weekend - he got lots of rest and was able to spend really quality time with all of us and Christopher. He is making A LOT of noises now -- trying to bridge the gap between moving his mouth to form words and making noise with his vocal chords to get those words out. It is like the two need to "marry" and when they do, when he finally manages to figure it out again -- he'll get it for good. We are VERY excited about that day and it is all we pray for lately. I can't even imagine what it will be like to communicate with him again. Even though he can't speak yet he is still able to, somehow, communicate well with us -- still does funny things, still reacts to things so that gets us by until the other comes.

He will yawn and make a typical yawn noise and we'll hear his voice. Or he'll hiccup and we'll hear his voice or a slight groan. It is amazing how he sounds EXACTLY the same - just like him. Dr. Fellus asked him to say the word MOM for him and he MOUTHED it -- nothing came out. He has done that a few times now. He is trying so hard to figure out how to get a noise to come out when he does it -- and I feel, deep down inside, that we are very close. I still pray constantly for it. I worry when I have to leave from time to time and go home for things like court dates, the fundraiser, etc. that he will talk for the first time and I'll miss it.

The fundraiser was absolutely amazing. It reminded me of my wedding -- trying to talk to and say thank you to everyone and not being able to. I was barely even able to converse a lot with my friends who came! We were JAMMED in there -- over 1,800 people showed up during the course of the five hour event and it was just out of my realm of comprehension -- I still can't believe it. Kenneth will be floored -- just floored. Even his police brothers from Virginia (the first force he was ever on) came up to see him and then attend the fundraiser... It was wonderful. We were interviewed and if you go to NassauPBA.org you can see the interview w/ my parents (they have a link to the TV-55 news clip). We are not sure how much was raised exactly but something like an excess of $100,000 dollars as well as a complete high school education for Christopher to attend Chaminade - free of charge! The people there donated that to us -- just amazing. My brother will NOT believe this when he is able to communicate and we start to tell him all of these things.

Today we spent all day just talking -- he spent most of the day in his bed, sitting up, listening to us, watching the Olympics, etc. Christopher gets in bed with him and sits next to him and they just kiss each other. We have kisses to hold us over until words come. Then, my husband, sister and Christopher had to head home for the week. Christopher is done with his camps for the summer so Jenn will bring him back mid-week for a few days! Once they left, I started to read a book about FDR to Kenneth. My brother is not only a history major but he is an American History fanatic... loves it. So, tonight, he looked bored with all of our usual "tricks" (hand games, looking in the mirror, thumb/arm wrestling, looking at pics, talking, etc) that I figured maybe he'd like me to read it to him. He was sitting up in bed and I sat right next to him with the book in front of both of us and began to read -- he follows what words I'm reading and even goes to turn the pages for me when we are ready to do so. HE LOVED IT. So, that's something I'll be doing everyday from now on. He was hanging on every word -- he really enjoyed it and when I would pause for a moment (at the end of the first chapter) he looked at me like "don't stop!" hahah -- and I said "you like this, huh?" and he smiled. It made me feel like "d'oh, I should have been doing this all along!" I would sing to him, read to him at NUMC when he was sedated and especially in the beginning -- and read prayers but never this.

It is amazing to see that he totally understands what I'm reading -- and still loves the same stuff (all things History related) as he did before. I told him, when we had to leave, that I'll mark the page and continue tomorrow -- he put his arm around me and pulled me inward -- it is apparent that he REALLY appreciates the reading. Which is great - I'm so happy he's happy.

Hopefully this week is our week for words.

Re: Updates on DaniRella's family

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.

Re: Updates on DaniRella's family

I love reading your updates! I pray for him everyday. Here's to hoping your amazing brother finds his words this week!

Re: Updates on DaniRella's family

I am so happy to hear of all of the progress he has made!

My BIL attended the event the other night (he is a Nassau police officer too) and said it was great event and CROWDED!!!!!!

Continued for you all

Re: Updates on DaniRella's family

Danielle it is AMAZING to hear all of Kenneth's progress & how far he's come! and on top of that it is so great to hear all the outreach & blessings that are being poured out from the people around you..God is so good! please keep updating us...lots of prayers for continued healing & progress!

Re: Updates on DaniRella's family

It is wonderful to hear what an amazing wknd it was and the fundraiser!
It was so nice to hear about you reading to him....you and your entire family are in my thoughts and prayers

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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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.