Re: Updates on DaniRella's family

**** December 9th ****

Oh I have so many great things to tell you all!! I can't believe we are here - in a place where every single day is something (or many things) that are so good... We have come so far from the days of just hoping he'd make it through or the days where a 'good day' was if he remained stable or if his temp didn't go too high. Amazing.

Well, recently my Mom and Dad were at Kessler with Kenneth b/c it was during the week and I can only come on weekends now with my sister and Christopher. So, it was just my parents and Kenneth was in the gym walking and sitting up on his own in front of a mirror... like practicing sitting up in a chair normal and then practicing going to stand up on his own with help from a cane. His PT wanted my parents to see how well he was doing - when they came in he was just so determined. They did a few, he did well and his PT told him to sit a minute and take a rest. Up until that point, we had been 'saluting' with Kenneth which is something cops do from time to time and they do it a lot in the academy. One day, one of the docs started saluting to him and he would do it back -- 'Good morning Officer Baribault' she would say and then salute. He likes it. Well, when he was sitting there in front of the mirror and my parents came closer to him he didn't look at them - he didn't take his eyes off the mirror. He was just sitting there, staring at himself, DEAD serious. My mom went to ask him what was wrong and with that, he put his hand up to his head and saluted himself in the mirror.... So, my mom (shocked) said 'Ken, are you saluting yourself?' and she kind of chuckled thinking he would look at her and smile - nothing. He just started straight into the mirror and did it AGAIN. With that, my mom LOST it - hysterical crying - had to leave the gym, reapply a whole face of make-up - the nines! Before this, when the doc would do it - it was lighthearted - he would smile and do it back but this time he was so serious -- as if to say, I'm getting there, I'm coming back. Just typing it gets me teary-eyed.

Shortly after that we rec'd remarkable news from the head doctor saying that Kenneth's EEG's (they are a scan showing damage to the brain and then they also show where improvements have taken place) -- he has had 1 done every two weeks or so since he was at NUMC back in July. The doc said that the improvements are nothing short of 'miraculous'... That Kenneth's condition, on the right side -- so not the side that is injured -- but on the right side of his head has gone from a 1 or a 2 on the right side to a 9.5 -- a NINE POINT FIVE!!!!!!!!!!! That is what the most recent EEG showed!!!!! Mind you, a 10 is where you and I and everyone else stands -- that is the level that we are all on!!!!! Mind you, the other side still needs to improve -- that side, because it is the side that was hurt, will take longer. BUT because the right side was able to heal and reconnect that much it really gives them hope that the injured side will also! When someone gets hurt on one side it can totally hurt the other side -- just in a different way. So, even though the injury was on the left -- it still affects the right because it is all connected. The fact that he was able to improve that much - the docs are just baffled and so thrilled. They want him to do Good Morning America, Medical Forums, Conferences, etc. They had this big meeting looking and discussing all of his EEG's and scans -- it is wonderful. It is amazing to think that he is lucky enough to be one of the ones who has their prayers answered... to be one of the people who overcomes something so severe - it just overwhelms me to think about it.

The left side, the injured side, by the way is at around a 7 -- going by the latest scan. There is a huge step in between each number also... So, going from a five to a six is HUGE -- I mean, HUGE and when he did that (back in early September) that meant that one side crossed over to the other -- that they were communicating with one another -- apparently, in brain injury world that is just unbelievable. So, we are nothing short of elated.

On a lighter note - we took Kenneth out to the Marriot the day before I left for Jamaica... So, Sunday - the last day in November because I left for Jamaica on Monday December 1st. We ended up ordering in Pizza -- from a place that actually has pretty good pizza - just like Long Island! Well, Kenneth hasn't had pizza in errrr over six months lol. Well, let me tell you - he saw that pizza box and it was like he hadn't missed a DAY. He recognized it IMMEDIATELY -- reached for it and opened it!!!!!!! I was like, geez Ken - want some pizza?? HE ATE THREE SLICES and he is holding back laughter has he is SHOVING it in his face -- and what does he do? He takes it with his left hand, puts it on the plate and folds on side over just like a true New Yorker -- then picks it up and eats it folded -- again, like he never missed a beat! Hysterical. Then, he had two slices of pumpkin pie on Thanksgiving - you could see how much he really missed it.

What made me insta-cry was when I went to leave. I explained to him that I was not going to see him for one weekend because I was going away for my anniversary to Jamaica with Vin. I booked it before he got hurt - I remember telling him about it back then. Anywho, so I am telling him - hoping that he understands I won't be there and that I want to be but I am going away... With that, he extends his arm toward me and I went in closer and he pulled me toward him and hugged me! That is something he never does unless I say to him 'Ken, give me a hug' or something -- With that, once he got me close - he kissed me on my forehead. He knew - everyone standing around him all looked at me like 'omg, he totally understands'... I mean, we KNOW he understands but when someone can't talk back to you it makes you still second guess but apparently he is completely getting it!

His Occupational Therapist told us that she had to try and find harder things for him to do -- that the puzzles and things they have are becoming way too easy. Some of the things used to trip him up and now he breezes through them. One time, I went in with my dad and he was putting together this huge puzzle just by looking at a picture of it whole -- then piecing it together. He reached in the far right hand corner with his good hand to put in one of the pieces and my dad grabbed it just to help him -- we knew he knew where he wanted it to go - it was just a reaching thing. Well! Kenneth gave my dad such a look like 'don't help me - i can do it!' LOL! My dad felt so bad! Ken never holds a grudge though lol.

My mom told me that a woman came around the other day to administer Holy Communion. Ken was in bed because it was after dinner -- watching none other than Law & Order -- and my mom said 'Kenneth, a woman is going to give you Communion now'. With that, she came in and Kenneth turned the TV off, pushed it away to give her his attention. She said a prayer, he closed his eyes while she said it, then she gave him the bread, he used his good hand to take it, eat it and then he (with his good hand which is not the correct hand to do it with) -- but with his left hand he crossed himself... all on his own. AGAIN, like he NEVER missed a beat!

On a somewhat bittersweet note - Christopher's mother attended parent/teacher conferences the other day for him. The teacher gave her Christopher's report card which said he did excellent and then the teacher gave her Christopher's journal. In one part he wrote (I'm paraphrasing here): 'Mommy bought me Adidas pants yesterday - it made me so happy because my Dad has the same exact pants and it made me think of him, I really like dressing like him - like father, like son' ...that is something my mom always says to Christopher (like father, like son) because they are so much alike but it made us all really emotional to read that. He is such a smart, deep and special little boy. I see so much of Kenneth in him - I love that.

That's all for now - plenty, right? lol!

I didn't know if we would ever get to the point where every day is a good day - but we really have. I can't even believe it sometimes. I used to say, I can't believe this happened, HOW did this happen? HOW did we get here? Now, I say - I can't believe how far we have come - and how well he is doing.

Re: Updates on DaniRella's family

Thanks for the updates! I love reading them and hearing about how far Kenneth has come! He really is a fighter and all the things you say about Christopher is a true testament to what kind of dad Kenneth is.

What a great time of year to all be happening too!

Continued

ETA: I hope you enjoyed your trip and were truly able to relax and spend quality time with Vin. I know you both needed it.

Re: Updates on DaniRella's family

Aw, that's such wonderful news!! Continued prayers. I hope you enjoyed your vacation!

Re: Updates on DaniRella's family

SO amazing. I am tearing up. Great news!!!!!

Re: Updates on DaniRella's family

God Bless. He'll keep healing.

Re: Updates on DaniRella's family

This is wonderul news

Re: Updates on DaniRella's family

Such wonderful news!!!!!!! So happy to hear of all his progress and I pray he continues getting better and better each day!!!!!

Re: Updates on DaniRella's family

I am so happy to hear how well he is doing. You tell each story with such emotion---I feel like I'm in the room with you and you're actually talking to me about what happened.

Re: Updates on DaniRella's family

***** December 27, 2008 *****

We celebrated our Christmas, together, as a family with Kenneth. I'm one of the lucky ones - I still have my brother here to hug, spend time with, and open presents with. Every single time I start to get 'down' about what he has been through or his struggle to reclaim his life prior to May 18th I start to think about those who didn't make it, those who were not given that second chance God gave Kenneth.

As much as this Christmas was difficult - it was more bittersweet for all of us. We had a quiet Christmas at the Marriott Residence Inn we've been staying in since July... I made baked ziti for Christmas Eve and brought some snacks as well as dessert and for Christmas, lol, we ordered in Chinese! It was the only place open and as much as it felt a little silly - it was very nice because none of us had to worry about cooking - they delivered it and we all focused on enjoying each other's company. Kenneth laid down for a little while on the couch and then on one of the beds in the room - watching Rocky like he has so many times in year's past... it is weird to look at him, sometimes, because, I glance over and he is sitting up in bed, legs cross at the ankles - one over the other watching Rocky and eating pretzels. It makes me tear up just to think about it because everytime I catch him like that I immediately think - he looks FINE. He looks like he did before he got hurt, nothing looks different, and no one would know - by looking at him - that he can't really talk and he can't walk without assitance yet. No one would know that he can't really move his right leg or arm. Most of all, no one would know that we came so close to losing him - that Christopher came so close to not having his Daddy anymore. I couldn't ask for a better Christmas gift than the gift of having my brother in my life, still.

We all sat in a circle, opening our gifts in the Marriott, and I helped Kenneth open his -- I held them for him while he ripped them open, like he never skipped a beat, with his left hand. Then, he would use his left hand to slide the box out of the wrapping, and flip open the box to see what he got! He was thrilled - in such a great mood, as always. He got a North Face jacket, a bunch of Abercrombie shirts (his fave!), slippers so he doesn't have to put his sneakers on everytime he wants to get out of bed and do something, a digital picture frame that will slideshow pics of him and Christopher, some PJ pants and lounging shirts, as well as some more work-out or therapy clothes. He was SO happy to see Christopher open all of his gifts too!

We are starting to realize that our 'reason' for being here and our 'mission' now that Kenneth has been through what he's been through is to inspire and help others. Once Kenneth comes home (sometime in January!!!!) I will be training Charlotte as a pet therapy dog. We will begin visiting different rehab places on Long Island and I'll definitely make some special trips to visit Kessler with her. Seeing the joy that pet therapy visits bring to so many patients made me want to do that with Charlotte. Also, Kenneth will be going (once home) to out-patient therapy five times a week locally. St. Charles has satellite locations all over the Island and there is one very close to the house which is wonderful and convenient. More than that, however, we have been blessed to help other families during our stay at Kessler and we will continue to do so after Kenneth comes home. There were so many people, victims of TBI's, that reached out to us during Kenneth's continued recovery -- but, in the beginning, when we were worried sick - the reassurance from these people was a Godsend. It seemed like whenever we would get really 'down' about the situation or when we felt as if we couldn't go on - someone would come off that elevator at NUMC to tell us that they had been hurt like Kenneth and overcame it -- it amazed us and comforted us during a time when we needed that most.

We want to do that for others - and we have been. There is young man named Robert at Kessler. I met him and his mother yesterday. He is from Miller Place but was up in Connecticut away at college. He was hit by a car while going back to his dorm -- the car then fled the scene and the driver still has not been found. Robert suffered a traumatic brain injury, injuries to his brain stem, a broken arm, and a broken leg as a result of this hit-and-run driver. We were able to pass along our prayer routines to his mother - which included praying to Saint Padre Pio three times daily, over Kenneth as well as putting holy water and oil on him several times a day. We still do these prayers to this day -- we feel as though the power of prayer and hope has helped Kenneth to make his remarkable recovery. We showed the album I have of pictures -- from the very beginning in NUMC up until just about a week ago capturing Kenneth's progress. The pictures literally speak for themselves - and they take people's breath away when they see them. From the most horrific - at the hospital - to the most depressing, when he was 40 pounds down and looked like a shell of who he once was -- to the most inspiring - him sitting with Christopher on his lap, smiling. There are no words to really describe this photo album and we realize just how priceless it is when the families of TBI victims look at it. You can see tears of relief and understanding -- they realize that there are others out there who KNOW what they are going through - which is so comforting. Then, you see their faces go from sadness and empathy to astonishment and hope. All of a sudden, they have such feelings of hope - during the most hopeless time in their lives. The fact that we can 'give' that to them - there is no greater feeling in this world.

I tell people - victims and their families - that NO ONE can tell them what will and will not be their destiny. We tell them not to listen to what the doctors initially say because they, all too often, give them such negative outcomes that it can literally destroy any hopes they had for recovery. We tell families to believe, to pray, and to support - always witha positive frame of mind - their loved one. And I always remind them that the doctors told us Kenneth would never recover past POSSIBLY being able to feed himself... That his cat-scans were 'horrible' and showed irreversible and significant damage. We REFUSED to believe that and because of that courage, we have been able to support Kenneth as he worked every single day to defy what the doctors said. He went from a 0 or a 1 when he first came to Kessler to a 9.5 on one side of the brain, he is at a 7 on the damaged side... He is battling aphasia and aproxia and has come SO far in that recovery. And not being able to eat on his own? Yeah, he had that down pat back in August - in fact, it was one of the very first things he mastered. He now shaves himself, brushes his teeth, wheels himself back and fourth to and from therapy, walks with a cane, puts complex puzzles together, writes, reads and he is not even half-way done yet. This is what I tell people - so, no offense to the amazing doctors who helped him at the hospital, but - NO ONE tells Kenneth that he can't do something and the same goes for all the other victims - don't let ANYONE tell you NO or that you won't be able to overcome because NOTHING can out-smart the human spirit. I believe that, with all of my heart. I can't tell you how many 'vegetables' walked off that elevator at NUMC and said 'Hi, my name is Dan. They told my parents I wouldn't make it through the night. They told them to start making funeral arrangements. Then, after I survived, they told them that they should take me off life support and give up because I would be a vegetable for the rest of my life - just breathing and blinking'. Now, that young man is back at work in NYC and lives a normal, enjoyable life. I lost count of how many people we had come to us with similar stories.

It was such an honor to be able to try and 'help' Robert's family - and give them hope like so many others gave us. They came to Kessler because a friend of them told them: 'If that cop who got hurt in May goes there, then it's the best and you need to take Robert there'. They came and saught out my parents - looking to compare stories, looking to see Kenneth. They remember praying for Kenneth after reading about him in Newsday - never thinking that their own son would, just a few months later, be the victim of a very similar situation. My parents were there to offer them advice, to offer them hope and to listen to them as they vented all the same worries we used to vent to people who came to support us. It is a wonderful thing to give back - and that is my Christmas story for this year.

Please keep Robert in your prayers - as he fights every single day to get back to who he used to be... as he struggles to do everyday tasks we all take for granted. He has a long road in front of him but he is on his way. He needs our prayers, positive thoughts and encouragement.

Merry Christmas everyone!

Re: Updates on DaniRella's family

What a wonderful Christmas gift!!! I'm so happy you and your family were able to be with Kenneth this holiday season!

Re: Updates on DaniRella's family

Danielle....Your updates always bring tears...You and your family, specifically Kenneth are such an inspiration. I'm so happy he's doing so well.

Re: Updates on DaniRella's family

I'm so glad that you have your brother to celebrate the holidays with. Your family's story is amazing and such an inspiration. Thank you for always sharing with us.

Re: Updates on DaniRella's family

It's so great to read about Kenneth's progress! Continued prayers ! I hope you all had a wonderful Christmas, what a blessing to spend it all together. Thanks for continuing to update.

Re: Updates on DaniRella's family

Continuing to keep your family in my thoughts & prayers

Re: Updates on DaniRella's family

I'm so glad all of you were able to spend Christmas together...what a blessing! Oh, I read about that boy Robert in the paper...so sad! God bless all of you for reaching out to other families and offering your support. Wishing you a happy and healthy New Year!

Re: Updates on DaniRella's family

Danielle.... u and ur family and especially Kenneth are an inspiration to all of us!!!! I am so happy to read about his updates and how well he is doing....

Wishing you and your family nothing but health and happiness in 2009!!!!

Re: Updates on DaniRella's family

*** January 7th ***

We have our date to go home!!! Kenneth is slated to go HOME from Kessler on January 13th which is this coming Tuesday. We have lots to do in order to prepare the house: this week I'm having it cleaned professionally top to bottom because my parents have not been there in a while (just in and out along with myself and my sister) -- so, they can come home to the house being the way my mom always keeps it. It is just less for them to worry about. Also, we are having a chair glide put in - it is a chair Kenneth sits in and then it glides him down the stairs. He has his own apartment downstairs in the basement - plenty of room. This allows him to have his own independence until he is further along in his recovery but we can still be there to take care of him when he needs us to. They are putting a ramp in - it goes from the garage to the kitchen so he can just wheel in easily from outside. That is all we are having done! We don't need any bathroom modifications -- we are lucky because Kenneth is doing well enough where he doesn't need bathroom modifications!

We set up rehab for him on an outpatient basis. He will attend St. Charles in Port Jefferson three days a week... He will have OT and PT along with speech therapy. The most amazing thing he'll be receiving once he is home is the program Kessler is starting him on in order to promote regular speech!! They have a fantastic, innovative device that attaches to his forehead by a few simple adhesive strips. He wears this device everyday, for a certain amount of time, for as long as the doctors tell us -- the device sends electronic signals to the part of his brain that controls speech. This part of the brain, which is the part of his brain where the impact occured, controls movements in the mouth, controls the ability to send sound to the mouth, to form words, to make sound, etc. ALL of those things that need to come together to create words are in this part of his brain.

The reason they waited to do this with Kenneth was b/c he wasn't ready yet -- in order to do this they needed to wait until that part of the brain reached a certain level of reconnection. They monitor his reconnection with EEG tests -- scans that show his brain and the progress it is making. They are continually amazed at the progress his brain is making -- it is nothing short of remarkable and we are SO SO SO lucky to be able to say that.

So, a few weeks ago when one of his docs told me 'we haven't even BEGUN half of the things we have in store for him' I thought, what do you mean?? We are leaving soon! And he explained that they are still going to do A TON of stuff for him once he is home -- and still have him come back to Kessler for once a month check-ups on these efforts. So, once he said that I thought, wow this is unbelievable! I realize now why they say it is such a long road -- because they have to wait until the brain is ready for the treatment in order to do it -- so, until Kenneth's speech section was ready for this (which happened only about three weeks ago) they couldn't even begin to set it up for him. The same thing went for everything else -- we had to wait to start walking until his pelvis healed and the brain is no different. So, they concentrated on other things first.

Now, since we got the news that he is ready for real speech - we are just thrilled. The doctors were astonished that Kenneth was able to get out the few words he did: Mom, Hi, Dad, You, Wow --- when, really, according to his brain he wasn't QUITE there yet technically to be able to do it -- but he did. How amazing is that? I just can't believe it - it has to be because of his determination and how HARD he tries.

Along with the head stimulator they have him ready to start doing once he is home -- they have this video game, believe it or not. This is a game that connects to the stimulator and then to a computer (we'll use Kenneth's laptop). It will let us know when the signals it is sending reaches certain parts of the brain we want them to go to... Once it doesn't reach that part it will provoke a signal -- and Kenneth will press a button on the computer (as part of the game) which will promote the signal to go the right way. It is SO hard to explain but basically - it is a fun, innovative way for him to HELP the signal reach where it needs to go. This 'game' along with the head stimulator -- the whole program -- has made 60-70% of stroke victims who could NOT speak at all SPEAK AGAIN. And speak well - not just a few words - but regular speech. We are POSITIVE that this is that little boost Kenneth needs to get back to normal speech very soon.

Again, I have to pause to thank God and say how lucky we are to have this kind of technology. Not only will he be able to recovery SO MUCH faster than he would without these devices -- they will give him chances he may not ever have without them.

We are truly blessed. I'm so excited for him to come home - he is ready, it is time for the next step in his recovery - we are moving forward!

Re: Updates on DaniRella's family

Omg....what wonderful news!!!!!

i will keep you all in my prayers for continuing down the road to a full recovery!!!!

What a great way to start the new year with such progress and all that optimistic news!!!!

Re: Updates on DaniRella's family

That's such wonderful news! What a great way to start the new year! We had that chair for my father and it was a god-send!

Re: Updates on DaniRella's family

Wonderful, wonderful news!!! And St.Charles is such a good hospital. God bless.