8/8/2010  
 
Hi Everyone
 
On Friday we took a trip into NYC. Dustin's sister, Lis, was able to arrange for Dustin to meet a very special person.  At one of her Animal Shelters they were filming an episode of "It's Me or the Dog" , one of Dustin's favorite Shows on Animal Planet.  As you can see from his giant smile, Dustin thoroughly enjoyed his visit with Victoria Stilwell.  She was so kind, it made Dustin's Day.  
 
We told Lis she now has to work on Ben Bailey, from "Cash Cab"  another of Dustin's favorites.  
 
Hope you enjoy the photos.  
Still working on photos from Dustin's Birthday Party.  He made an awesome Stevie Wonder at the Lip Sync.  Will send soon.

 
Kathie

    

 
  8/24/2010  
 
Hi Everyone,
I know I already let everyone know what a great time Dustin had at his party.  I've been promising pics.
So here ya go, Dustin as Stevie Wonder - Lip Syncing "Happy Birthday"
 
 
 
 
 Also For anyone that is interested
Corry will be performing at Theatre Three - November 6th
"Sing me a Song" A night with Corryn Manwiller
in the cabaret downstairs at the theatre.  2 shows 7:30 and 10:00 - only seats 100 so order tix early
you can order on the web site at www.theatrethree.com
or call the box office 928-9100
 
will talk soon
love
kath
  
  8/28/2010  
 
Hi Everyone
 
Dustin had a great week.  First on a medical level, he had a baclofen pump refill with no changes to the dose.  Doc is very pleased with his range of motion and lack of spasticity.  Also he thinks we need to revisit the removal of his trach and gave us a referral for an ENT.  I think we all agree on that one.  Aunt Marg ordered a portable hoyer lift, hopefully we will be able to lower Dustin into the pool Labor Day Weekend.  We'll keep ya posted on that one.  He is doing great with his dynavox communication device and his power chair.  Unfortunately, the chair some times has a mind of it's own, and it's very frustrating.  The van is fabulous, much easier on everyone's backsides, and I definitely experience less sea sickness when riding in the back. 
 
On a "More Great Things that have happened this summer" level, Dustin went to the Mets game Thursday night with his Dad, John (Physical Therapist) and Nick(Nurse).  He had a great time and great seats, even though the mets lost yet again, Dustin enjoyed being there. See for yourself in attached photo.  More pics on website home page.  www.dustinshope.org
 
On Friday 8/27 Dustin picked the winners for the Yankees/Mets tickets.
Ray Herbst won the Yankees and Ruby Nail Salon won the Mets.  
Pics attached of Dustin picking the winning tickets.
So far Dustin has met his favorite Animal Planet Show Star - Victoria Stilwell
he went to a mets game at the new Citi Field
Now he just wants to meet Ben Bailey of Cash Cab!!!   Anyone have any connections?
 
Well to the winners of the Raffle - Enjoy the game!!!  And to everyone else THANK YOU for participating and helping to raise the money for Dustin's Van.  You are all Dustin's Dream Team.!!!
 
Love to all
 
Kathie

  

  

 
  10/22/2010  
 
Hi Everyone
 
It's been a while, I know.  I think since my last Email - Dustin had the trache removed.  It doesn't seem to be closing again.  But they are thinking about Hyperbaric Chamber treatments.  We'll see.  Dustin is doing great with his communication device, he has no problems making his wishes known.  We have a new nurse on board.  Aunt Doreen is now officially on the job.  The power wheel chair has been giving us some trouble, there seems to be a short in the head rest.  It will be working fine and then all of a sudden he can only go left.  So the system being what it is, we can not get it repaired because it was donated to us.  Medicaid will not pay for repairs, so instead they are trying to get him a whole new chair - possibly with a fiber optic joy stick which he will operate with his left hand.  They were trying one, and he seemed to be able to operate it.  We have taken a break from therapy at UCP.  We are going out to South Hampton Hospital 5 days a week for aggressive speech and swallow therapy.  So we will continue OT and PT out there for now.  There is a new facility opening next year in Medford, New Beginnings Community Center.  It will be a TBI Rehab center.  The Speech Pathologist we are seeing out in South Hampton will be affiliated with New Beginnings, so hopefully we will have a better chance of getting Dustin in.  It's a day program.  Anyway he is doing great with the swallowing and making sounds on command.  So who knows, with Dustin's positive attitude and determination, I sure it will be one more success for Dustin. 
We've been using the Ergys Bike, it's an electric stim bike, the electrodes are attached to Dustins upper leg- front and back, it helps him to pedal.  John, Dustin's PT from UCP comes over to help set the bike up and he and Ken help Dustin to pedal, right now they are doing most of the work, but hopefully Dustin will get better at it.  It's great for his leg muscles. 
 
On an unrelated note, Corry's show is approaching fast.  11/6/10 at Theatre Three in Port Jeff, she is doing a one woman cabaret in the cafe downstairs at the theatre.  Only 100 seats, so if you wanted to go and haven't gotten your tix yet, 7:30pm is almost sold out - seats are still available for 10pm show. 
 
I will update again soon, it's 6:00 and I'm still at work, gotta get home.
 
Happy Halloween Everyone!!
 
Love Kathie
  
 

12/18/10

  
  Merry Christmas to All….

Hi everyone
I wanted to take this time to update you all on Dustin’s progress. He has been taking great strides at therapy these last weeks. He is trying very hard to speak. He has almost mastered uh-huh and uh oh. It takes quite a lot of focus and concentration and he can’t always make the sounds, so for quite some time his speech therapist was convinced that we were delusional. This past week Dustin finally shared his voice with the Doctor and ST, thank goodness. All his therapists are so pleased with his progress. He is working exceptionally hard with his PT. He has been working on rolling onto his side and back flat, he is getting stronger and accomplishing more than we ever dreamed possible. As usual Dustin has charmed his PT, she asked her husband (he is a wheelchair tech) to visit with Dustin to help with his wheelchair. They came out last weekend and he is hooking us up with a wheelchair clinic to get Dustin a power chair. He made a few modifications to Dustin’s manual chair, but unfortunately we are stuck with this chair as is for 5 more years. Dustin seems to bring out the best in people and therefore is surrounded by the most caring and devoted caregivers. 
Of course he is a master at the Dynavox communication board. He is now the master of his universe. He can control the TV, fast forwarding commercials and pausing when it’s time for meds. He usually saves some message for me to read when I get home from work. Usually it’s his plans for the evening, when he would like to go to his room, what he would like to watch for the evening or it’s some reprimand for messing up his DVR schedule. I was in the dog house for forgetting to add extra time to the Ranger game that went into overtime. I do that a lot. The other night after Dustin was comfortable in bed, I told him I’d be back at 11 to put on Comedy Central and set the timer for the TV to go off in 4 hours, I told him I was going to go wrap Christmas gifts. He started to move his lips to signal he had something to tell me. He spelled out “Is it movies for me”, trying to trick me into telling him his Christmas gifts. Everyday he makes me laugh. Everyday he makes me happy. And Everyday I am more proud of him. He is one of the strongest men I know. He looks ahead to his future and he sees himself walking and talking. Thanksgiving morning I asked what he was thankful for, he told me has was thankful to be able to speak. He is so positive of his recovery that I believe he will achieve his goals. We are thankful everyday for his continued progress, for all his wonderful caregivers and for our wonderful, supportive family and friends. On the subject of family, you probably all know by now, that Corry and Tim are engaged. We are so happy to welcome Tim into the family. He already is our son in our hearts and Dustin is so pleased to have a brother. 
We’ve suffered many losses in our family and extended family this past year and we all miss those special people that are no longer with us, I’m choosing to remember all the wonderful, fun times we’ve had and focus on all of the great things that have happened in 2010 and the even greater things to come in 2011, I know that’s what Grammy would want. So all of you, “Dustin’s Dream Team” that have held us up, we wish you wonderful holidays, happiness, peace and joy.

Love
Kathie, Ken and Dustin 

And to all a good night!!		  
  2/27/11  
 
Hi Everyone
 
                Hope this email finds you all well .It’s been a while since my last e-mail and a lot has happened since then.  Dustin was progressing very well at therapy.   Speech is a real roller coaster ride for him.   Some days he’s phonating and swallowing without any difficulty and then the next day nothing.  About this same time he started falling asleep during the day.  He was actually soundly sleeping, where you actually had to shake him awake.  We thought it was that his Baclofen Pump was set too high, so we had the dose lowered, it seemed to help for a few days, but then he started the sleeping all over again.  We were definitely baffled by him, he’d have an awesome day at therapy; raising his arm and rolling over on his own, then the next he couldn’t keep his eyes open.  After several weeks of this, we finally got a possible answer.  On a Monday evening, Dustin had a Grand mal seizure, which definitely scared the life out of me.  We called 911 and he was taken off to Stony Brook Hospital.  By the time he reached the hospital he was already in the postictal sleep phase, but they still gave him Ativan, (a drug to relieve anxiety-and often given while someone is having a seizure that is not breaking), so needless to say Dustin was unconscious for several hours.  They wanted to admit Dustin, but we took him home and saw his neurologist the next day.  We had a 24 hour EEG and an MRI this week.  Hopefully we will get some answers this week.  Since the seizure, Dustin has been a little off his game.  We do not know how or if the seizure causes any of his current behavior.  So as always, it’s a few steps forward and then a few steps back.  We know Dustin will get through this with the same determination he has fought everything else.  Actually all the Doctors were surprised that it took this long for the seizure disorder to develop, apparently it is usual for people to develop seizures after brain injury. 
Big news, Dustin went to a Rangers/Flyers Hockey game at the Garden this past weekend.  Something he used to do on a regular basis before the accident.  He really enjoyed it, but the train ride home seemed to put him over the exhaustion edge.  Next time possibly we’ll let them take the train in and pick them up with the van when the game is over.  I think Dustin was a little depressed after the game, I’m thinking he’s missing his life before the accident.  He really needs more social events to fill his time.  Hey friends, just a short visit, or a movie night would be great.  I know it’s hard to see your friend in a wheel chair, unable to speak, but just an hour visit from his friends feels like hours to Dustin.  I’m thinking about a monthly party night, early evening so everyone can still go do their thing later.  Anyway that’s the end of my plea for help.
On a what’s to come note, we will continue to travel to South Hampton for therapy.  Until, hopefully New Beginnings will open this Spring, it’s a new facility which will supply all therapies plus a social environment.    As a matter of fact, We will be at Coram Lanes Saturday 3/5 2p-5p for a fund raiser for New Beginnings.  Their goal is to open in April.   The speech pathologist from South Hampton will oversee the Speech Therapy program.  They are hoping to also have their own Hyperbaric Oxygen therapy unit.  They already have PT and OT on board, with the hopes of aqua therapy as well. It sounds like great opportunities for Dustin to continue to progress.  There is a young man we know, who after 10 years following a brain injury, is now speaking again.  As long as Dustin continues to fight, we are sure anything is possible. 
We wish everyone a great spring (which hopefully comes real soon) we are so tired of winter.  
 
Love Kathie
 
 
  9/12/11  
 
 
Well I really can’t believe my last email was in February.  Time really does fly when you’re having fun.  We had a Family Reunion, went to 5 Ducks games with awesome firework displays, gambled at Yonkers Empire City Casino (Dustin won $96), Ken joined a band and we went to see them at the Holbrook Country Club Bar, and visited Baiting Hollow Farm Vineyard numerous times.  Unfortunately, the big Lip Sync Birthday Party had a party crasher – Hurricane Irene.  Not only did she ruin Dustin’s party, she dropped a tree on our van (not Dustin’s Van thank goodness).  I’m sure I’ve forgotten some others, but all in all we had a fun and eventful spring and summer.  I can’t believe summer is just about over.  Dustin’s favorite pass time is e-mailing, he sends out his orders daily – what movies he wants, what music to download, his plans and schedule for the evening, he even e-mails his favorite nurse while she is sitting in the room with him.  He loves watching movies, listening to music and he has a new friend that is working on painting with him.  And the best thing he is looking forward to, Tim’s Bachelor Party.  X-rated and that’s all I’m saying about that.  And he is looking forward to the wedding in November.  He e-mailed Corry his music requests already.
Anyone interested in receiving email from Dustin, email him at dustmann@optonline.net and I will ad you to his address book.
 
Therapy is going well, but with the current changes to Medicare and Medicaid I pray we will be able to continue with the same frequency of visits.  We are still traveling out to South Hampton Hospital.  The New Beginnings Rehab in Medford opened, but we weren’t confident the therapy was of the same caliber.  We are hoping with time they will eventually meet our expectations.    We have a fundraiser coming up at Mulcahy’s in Centereach on the 18th.  We are hoping to raise the funds necessary to keep Dustin in therapy at South Hampton.    His therapists are all such special people, they go above and beyond, they want Dustin to succeed as much as he does. 
 
Hope to see all who can make it to the fundraiser.  Ken’s band will be performing and Corry will sit in on a few songs.  Thanks to everyone for spreading the word about the fundraiser. 
 
The best things in life aren't things!
Love Kathie
 
  12/10/11  
 
Hi all,
Lots of news.  Best of all - Corry and Tim were married 11/5/11 and Dustin could not be happier to have a brother.
And he is so happy for his sister.
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Then there's Dustin the party animal
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Dustin spent all day Sunday in bed.  He partied like crazy - he was so exhausted he slept the entire day away.  

Thanksgiving was great.  We set the tables up in the studio, wheeled Dustin around to join us.  He tasted some mashed potatoes.  and watched some football with his cousins and new brother.  Overall a great day with much to be thankful for.

Now he looks forward to Corry and Tim moving in with us until their new home in No. Carolina is ready.;-):-(  Happy about the stay with us but sad about the move.  Anyway we will enjoy our time together and Dustin will get to spend more time with Madison and Oakley (Corry & Tim's dogs).  We'll have to make sure the Van stays in great running order for our future visits to N.C.
Therapy has been going well.  OT working on Dustin using a joystick to operate chair, computer etc.  Look out Chris - Dustin may be back to whooping you at Playstation.  LOL
PT working on strengthening that arm as well, sitting up & supporting himself, rolling side to side on the mat.  He really is getting stronger everyday.  He loves going to therapy.  Speech - working on vocalizing and swallowing.  He said Ma to me on Thanksgiving morning, he was so full of pride he smiled ear to ear.  (which is another big accomplishment - full smile both sides of his mouth equal)  Also as you see in the pic with Corry - the kiss pucker - all new accomplishments.  He works so hard, he never gives up.  He is my inspiration, I am in awe of his determination.
This past Tuesday we had another scare.  Doreen, Ken and Dustin had just arrived at Southampton for their early therapy day, when Doreen noticed Dustin's right pupil dilated and not reacting to light.  She immediately contacted Dr. Lou who instructed getting to Stony Brook asap.  I left work to meet them there and the waiting began.  After finally getting a CT Scan we were told that there was a small calcification in his brain - led to believe it was nothing to be alarmed about- and Neurology would be down to speak with us.  Meanwhile of course - no food, no meds the usual mess that sets off all kinds of other problems.  Luckily Doreen is always prepared - we had the necessary meds, etc. packed in Dustin's bag.  Finally they gave him some IV fluids and the waiting game continued.  At the end of the day (after normal bus. hours) the neurologist comes in and keeps talking about tomorrow morning.  We're all looking at each other like why are we staying here, I thought it was nothing?  When the bomb drops - he has a Pineal Cyst that has hemorrhaged.  Didn't anyone tell you? of course he's being admitted, they need an MRI - we have to wait for neurosurgeries diagnosis - if he needs surgery or not!  What was she talking about? This couldn't be they said a small calcification.  Anyway we stayed IN THE ER no beds available on neuro floor (44 Hours)!!!  Since Dustin has a baclofen pump which is affected by the magnetic nature of an MRI, there was a long discussion about if he could go into an MRI, this went on for at least 3 hours - until of course as I had told them over and over he can get an MRI the pump just needs to be interrogated afterwards to be sure it turned itself back on after the procedure.  Now they find out the MRI is broken and he'll have to wait for the morning.  Of course we all know it was after hours.  Anyway I can go on for hours about the fiasco - I'll just put this out there - are all overnight ER staffers Blind & Deaf?  Everyone of them banged a dirty linen cart outside Dustin's room into his door every time they walked past, startling Dustin & I - sleeping was impossible.  Also the decibel level they speak at is so loud I'm pretty sure you could hear them in the next town, I'm pretty sure they all had their hearing aides turned off.  Well anyway the diagnosis-prognosis; we go next Wednesday for a follow up CT, then we see the Neurosurgeon he will decide if we will wait the 6 weeks for the blood in Dustin's brain to drain then do an MRI -in patient - sedated with contrast and spinal tap to check for other tumors.  So the course of treatment will all depend on the CT next week - if no change we wait for MRI - if changes I have no idea - we will have to wait and see.  But at least this finding does explain some of the abnormal behavior we've been noticing in Dustin.  Those of you who are on his e-mail list may have noticed some of the repetitive nature of his emails.  And some of the confusion about not remembering what people look like.  Also Dustin is more tired during the day.  Anyway if you google Pineal Cyst you can see what we are up against.  In Dustin's normal way the only thing he was worried about during the ER stay was would he be home in enough time to use his computer and watch his TV.  He really cracks me up, Ken was grabbing a bite in the cafeteria, Doreen & I were trying to get Dustin comfortable and deal with the meds and other needs, and Dustin keeps wanting to spell out all these demands for TV recording, emails that must be sent - we keep asking him if we can just finish what we are doing & we'll get to what he wants to say again.  No he can not wait, he must tell us something immediately - well talk about lightening the mood - he spells out with a big grin "I keep farting"  Doreen & I just lost it.  I will update again soon once we know what is happening.

Happy Holidays Everyone!!  I had intended to send cards this year - but sorry - not happening.  I'm going to try to at least get a christmas tree up today.  Hope the new year brings everyone - Health, Happiness and as much love as we get year round from all of you!
Merry Christmas - Happy New Year!
Love the Manwillers
 
 

1/13/12

  
 
Happy New Year
 
We are still in limbo.  Waiting on Stony Brook to schedule Dustin's admission for the MRI and Lumbar Puncture.  Unfortunately we will not know anything until if the tests, if even then.  The only hope is that the tests will give the docs a better view of cyst/tumor? to decide if a shunt is needed for hydrocephalus.  The options will be the shunt, surgery for removal or radiation.  I'd prefer the radiation and not opening Dustin's skull.  Any way Dustin is aware of the the impending procedure and is prepared for it with his usual strength and positive attitude.  I will update again as soon as we know the next step.  
 
Hope everyone had a great holiday & that 2012 will be a better year for all of us.
love
kathie
  
  1/28/12  
 
Hi everyone,
Good news yesterday!  We didn’t have to stay at the hospital overnight as planned after the sedation, MRI and Lumbar Puncture.   Dustin was the perfect patient; he awoke from the anesthesia with no complications at all.  The anesthesiologist was really great, really mellow and listened to us about Dustin’s abilities, so rather than intubate Dustin and put him on a respirator he used inhalation aesthesia, sevoflurane, through his trache.   He was actually already awake by the time they did the Lumbar Puncture and did great.  The neurosurgeon said he has a routine at home that works so it was best to let him go home where he is well taken care of.  Thanks to Dustin’s nurses!  Everyone complimented that Dustin was the most well cared for and clean patient they’ve ever seen.   Sheesh what does that mean – that most people that come to the hospital are dirty?  (I guess they mean patients with Dustin’s handicaps.)  Anyway, kudos to all of Dustin’s nurses for taking the best care of him ever!!!  So step one is done, now we wait until Wednesday for the results.   I’m looking forward to more good news, that’s my story and I’m sticking to it.  I just can’t help being thankful that we did not have to stay in the hospital!!!  I will keep everyone posted after Wednesday.
 
On the more good news front – Dustin is really doing great with his speech therapists; he is working so hard on phonating and swallowing.  He really wants to speak again and eat again.  I’m sure those of you that are on his email list already know this since he sends his shopping lists on a regular basis.  He tasted some ham and bean soup the other day.  Big smiles!!  He’s always emailing that he used to be a great chef, that he wants a job and wondering what kind of job he can have, so I’m thinking maybe we could write an online cookbook, because he was a good chef, his grandpa was a good chef and I’m not that bad myself (at least that’s what I say).   So we will keep you posted when we launch our site.  One of my favorite emails from Dustin, which I know many of you have received:
“When I get out of my wheelchair let’s eat real food.”
 
Corry and Tim have moved into the apartment (formerly Ken’s Studio), Dustin enjoys having them and the Dogs here.  However, he does think the little dog makes too much noise and he would prefer a quieter one.  lol  Just one more of his many emails. 
Hope 2012 brings all good things for all of you - my family, friends and personal support group.  Thank you all for listening.
Love Kathie
 
Generosity is not giving me that which I need more than you do, but it is giving me that which you need more than I do.
Khalil Gibran
  
 

2/16/12

  
 
Hi Everyone,
 
The results of the recent MRI and Lumbar puncture are in.  The lumbar puncture results were negative for any growth, which means that it is a cyst rather than a tumor.  The MRI did not show any significant changes in the size of the cyst and most of the blood has been absorbed.  So the plan is to watch the cyst for any changes and watch Dustin for any neurological changes.   The next step will be another MRI in 6 months.  We hope we will be able to avoid any brain surgeries.  Dustin is doing great, very excited to have Corry and Tim staying with us and looking forward to the travels of "Flat Dustin".
 
Due to Dustin’s physical confines, traveling opportunities are limited.  Flying is out of the question and a hotel stay nearly impossible.  The Handi-Capped Accessible sign does not necessarily mean equipped for someone with Dustin’s extensive needs.  Since vacation is one of the many things that Dustin misses since his accident, we are beginning a “Flat Dustin” campaign.  We are hoping that you all can help Dustin travel again.  All you need to do is email your request to have Dustin visit you or accompany you on your next trip.  Take pictures with “Flat Dustin” and write about his travels and adventures with you, then email them to dustmann@ymail.com .  We will post the stories and photos on his webpage at dustinshope.org.  Your adventures with “Flat Dustin” will become Dustin’s adventures, and he is looking forward to hearing all about them. 
 
So far, "Flat Dustin" has been spotted at the Parade for the NY Giants in NYC, at NYU for Josh’s show and to No. Carolina with Corry and Tim.  Photos will be posted soon.  He is looking forward to visiting Mongolia with Uncle Andy in the fall.  Where in the world will "Flat Dustin" be spotted next.  We are hoping to have the link on his webpage up very soon.
 
For those of you who are wondering what "Flat Dustin" is, we have taken a picture of Dustin while on his Tilt table.  We laminated and cut it out like a paper doll.  He can fit in your suitcase to travel anywhere or in an envelope and mailed for a visit with family in Florida or friends in Texas and Arizona.  "Flat Dustin" can go anywhere!  Let's see how far!
 
More updates soon
  Love Kathie