Tuvel Communications Blog

December 01, 2009

Should a 10 yr old have a Facebook account?

http://mitcharno.posterous.com/

Should a 10 yr old have a Facebook account?

I asked, in an early morning tweet, if our 10 yr old son should have a Facebook acct. The tweet also appeared on my Facebook status update. A Facebook friend then picked up the conversation and, it took off. You can read the rest of the story and updates here.

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August 17, 2009

Elan: Sept. 13 Save-A-Limb-Bike-Ride

The following comes from Elan...

On September 13th, I'm riding in the Save-A-Limb-Bike-Ride. I am hoping that you can help me reach my fundraising goal of $1,000.00!

The Save-A-Limb-Bike-Ride is 6 miles long. The reason I'm doing this bike ride is because it's for the Rubin Institute, and that's the place where I had my 2 surgeries, and that's the place that's getting me better!

I'll be doing the bike ride, along with my mom & dad, to raise money for the Save-A-Limb Fund which is a part of the Rubin Institute in Baltimore, Md.
The money raised from our bike ride will be used for people with no health insurance that need surgery. The institute, part of Sinai Hospital, does limb lengthening and hip surgeries. I had my operations done there because they have the most advanced technology for my hip condition. Now, I want to do something so that another kid can have the same chance as me.

We've been riding over the summer to get ready for our bike ride and now I need your help! To sponsor me for my September 13th bike ride and to Support the Save a Limb Fund, please visit my webpage and donate. It's that simple!
All donations are tax deductible too.

This has been a very rough experience, and we want to do everything we can to give back to the Rubin Institute, so please, please help us. If you have any questions, please let me know. Thanks so much if you can help me! I'll post pictures of the bike ride to my website and let you all know when they're up.

Love, Elan

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July 18, 2009

Elans direct connection to the Beatles

Many readers know that Elan, our 10 yr old son, is recovering from a tough year. Elan has a hip condition called Perthes. While not life threatening, it is painful and long lasting.

Elan has been praised and written about. As if that weren't enough, Elan now has a direct connection to The Beatles.

Last year, my wife reconnected with a high school friend. He actually learned about our son through Elan's website. Turns out that my wife's friend is business partners with none other than Allen Klein, founder of ABKCO Music & Records.

Beatles fans will remember that Klein was blamed in some circles for contributing to the breakup of The Beatles. Klein's ABKCO Records was immortalized in George Harrison's Beware of ABCKO bootleg.

ABCKO records was kind enough to send Elan a Rolling Stones Greatest Albums In The Sixties limited edition Japanese import boxed set. The record company was also responsible for having southern rock band Molly Hatchet do special shout-outs to Elan while on a recent European tour. You see, Elan played drums until this year's surgery. Recently though, he has started to play again.

Allen Klein recently passed away. The day he died, my wife received another e-mail from her high school friend. Klein suffered from Alzheimer's. One of the things he had asked about as he slipped in & out was "that little hip boy." They told him that Elan was playing the drums again. He understood nodded, and then smiled. Those closest to him said that for a moment, Elan's guts and determination made a difference to Allen Klein.

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June 07, 2009

Sick kids and social media: why face-to-face meetings are important

Our 10 yr old son has Perthes disease, a degenerative hip condition.

Over the past year, we have become involved in online support groups. This weekend, there was a pool party for local families that are involved in one of the groups.

In the communications business, we counsel clients to have an integrated approach that encompasses traditional as well as online relationship building. Yesterday's party was a reminder of the Internet's advantages and limitations. As you can imagine, our family has shared quite a bit of information with complete strangers. Over time, we have gotten to know many of the families involved. Again, all participants share a common bond and are passionate about their children.

You can build a virtual relationship but... sooner or later it's a good thing to make face-to-face contact. You can always transfer the relationship back online once you've met in the real. At work, we do many Skype video conference calls but again, it's nice to actually meet people. Virtual relationships can complement but not replace real encounters that produce the laughter of children.

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May 15, 2009

Elan walks again!

Two weeks ago, Elan’s Drs. gave him the go-ahead to walk! This means that he can weight bear or walk as tolerated. Since having the fixator removed in March, Elan has been wearing a brace and using crutches. He continues to wear the brace but, only at night. He no longer needs crutches but we encourage him to use them for support when he gets tired. We will still use the wheelchair for longer distances.

The Drs feel that Elan is far enough along in recovery and that walking won’t damage the hip. Most of Elan’s hip is in the re-growth phase now. One of the things that the surgeon did to move this disease along was to drill a small hole Elan’s growth plate. It is the hope that this stimulates blood flow to the femoral head (think ball and socket) so that the hip can once again grow. Elan’s surgeon is very optimistic and feels that he won’t require additional surgeries. He feels that he caught Elan just at the right time to make an impact. Through distraction (the fixator) and abduction (bracing to hold the ball in the socket), Elan has dramatically improved the condition and shape of his ball in the right leg. The ongoing concern is that something happens to once again flatten the ball before complete re-growth takes place. And then, there’s the long term impact of all this… Elan’s gait or walk should return to normal over the next several months. We’re fortunate as there doesn’t seem to be a discrepancy in his leg length- something common with Perthes.

We solicited 2nd and 3rd opinions before allowing Elan to walk again. A more conservative approach would keep Elan ‘toe-touching’ or non-weight bearing for several more months. The crazy thing about this rare hip condition is that none of the experts agree and to a certain extent, make educated guesses at the road to recovery. After all of these years, no one really seems to have a clear understanding of what the correct path is. What they do know is that range-of-motion is critical to long term prognosis. Elan’s ROM has always been excellent due, in part, to his athletic ability and attitude. The Drs. that we visited were impressed with Elan’s ‘before and after’ progress and x-rays. In the end, we worried about muscle atrophy from not using the leg for too long. We also decided to follow Dr. Standard’s advice, the Surgeon in Baltimore, MD that is guiding Elan back to good health. Elan’s long term prognosis continues to be guarded but his chances for a future pain-free life have been greatly improved by the path we’ve taken.

Elan won’t return to a more active lifestyle until Fall at the earliest. For the time being, there is no running/jumping/sports like activity. As you can imagine, we’re all pretty excited to have reached this milestone. Elan still has a long way to go but is making progress. He is often frustrated at the snail’s pace of improvement but we constantly remind him how far he’s come. The pain never left and unfortunately Elan continues to take strong meds for some relief. There have been a couple of falls but thank g-d, no damage was done. Around here, we gage our days in terms of not-so bad and really bad pain… From what we have learned, Elan’s condition (Perthes) seems to come with long term pain. In the short term, we will continue traveling to Baltimore twice a week for physical therapy.

Life is slowly beginning to return to a somewhat normal existence. We are now beginning to worry about the challenges of raising a 10 yr-old boy  Elan has finally returned to school almost full-time. With the help of teachers, a wonderful nurse and administration and his friends, he is becoming acclimated after having missed so much of the school year. Janet & I have gained perspective during this experience, take nothing for granted, and love our kid more than ever. Parents often say they’ll do anything for their kids, we feel like we’ve been put to the test! Once again, we are wowed by our 10 yr. olds guts, determination and bravado in the face of adversity and pain.

Please wish Elan luck as he continues his journey that brings him back to good health!

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March 31, 2009

This marking period we have learned from, rather than taught, Elan

We have learned about courage and tenacity. We have learned about an unquenchable desire to learn and grow under very trying circumstances. We have learned about patience and about living with pain. We have learned about making the best of a difficult situation, about putting on a cheerful face, despite great discomfort. We have learned about sustaining friendships with others, when we have every right to focus only upon ourselves. We have learned that our children are often our best teachers.

We cannot give grades for these lessons; they are profound lessons that go far beyond grades. Soon there will be a time for grades, and we are certain that those grades will be as outstanding in the future as they have been in the past. Soon we will all share in Elan's pride in his academic achievements. But, no matter how stellar his achievements will be, and they will surely be stellar, they will not compare with the personal bravery of the fourth grader who has inspired us all.

Elan's fourth grade teacher. More on Elan here.

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March 05, 2009

Elan gets rid of a fixator

Elan's surgery yesterday went well.

The fixator was removed and replaced by a brace. The brace keeps Elan's legs abducted or spread apart. Doing this allows the reforming femoral head to grow nicely into the hip socket. Elan will wear the brace full-time for 2 months. Then, only at night. He will continue to use the walker and wheelchair. There is some discomfort from surgery and the brace but, that should improve.

In addition to removing the fixator, the surgeon did an arthrogram or shot dye into Elan's body and took x-rays of his hip in real time. This offers a better picture of where the hip is in relation to regrowth. He also injected Botox to loosen the muscles some. Because Elan's range of motion is so good, he didn't have to release the tendons again or do an osteotomy.

The news is all good. The pictures show a perfectly round ball that is forming. They also show nice spacing between the femoral head and acetum or hip socket. Elan's ROM or range of motion is excellent. ROM is critical and includes his ability to lead an active & pain free life. Dr. Standard, Elan's surgeon and a leader in this field, said that the pictures are the best he's ever seen. He characterized the progress as fantastic. He also said that, if this continues, Elan will become his poster child.

We ran into a Resident/Fellow in recovery that remembered us from one of our earlier, fact finding trips. Turns out that he was at Shriner's Hospital in St Louis and in the room with us as the Drs. were reviewing Elan's case. He said that Elan's progress with the fixator was 'stunning'. While this is good news, it's also interesting. The external fixators use for Perthes is relatively new and controversial with many in the established medical community favoring tried and true treatments such as long term casting & more invasive surgery.

Elan is slowly getting used to a fixator free life. He remains anxious and doesn't want to do anything that will jeopardize the progress that he's made. He remains on valium for muscle spasms and Tylenol laced with codeine for the time being. Jan and I are relieved. Once again, we're very thankful.

The last six months have been grueling but there is a light at the end of the tunnel. We are trying to impress upon Elan that however painful, the experience is worthwhile if it returns him to good health. Elan has a long road ahead but, we're off to a very good start. We'll be staying in Baltimore for the next 2 weeks while Elan undergoes extensive physical therapy. Then, we're back to PT three times a week and lots of work at home.

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January 05, 2009

Web of caring: Hospitalized, JDS student takes life online

by Adam Kredo

Staff Writer, Washington Jewish Week

After major surgery, most 9-year-olds would merely take it easy. But not Elan Arnowitz: From the comfort of his Baltimore hospital bed, this youngster has decided "to go public."

A fourth-grader at the Charles E. Smith Jewish Day School in Rockville, Elan has Perthes disease, a degenerative hip condition that causes immobility and leg pain. The only fix was a major form of hip surgery that took place at Baltimore's Sinai Hospital. Though successful, the operation has had the Rockville youngster confined to a hospital bed since the start of November.

"Not many kids my age have been through what I've been through," Elan said, referring not to his condition, but rather to his family's decision to take his story and life online in the form of multiple Web sites, blogs and Internet forums.

After nearly two months of nonstop posting and updating to his site, Elan has become an Internet superstar of sorts, receiving nods from not only family members, but various celebrities and sports heroes as well.

Read the rest of the story here.

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December 17, 2008

Elan updates: homeward bound...

We do this song in concert called "Beatin the Odds." I like playing that song because there are some awesome guitar solos. For the rest of our tour in Europe, when we play that song, I am going to tell the audience that "this next song goes out to Big E in Baltimore, the toughest guy that we know." Rock on dude!” Bobby Ingram: lead guitarist of Molly Hatchet

Happy Holidays from Baltimore, Maryland!

Elan is almost 6 weeks out of surgery and still doing pretty well! For the first 2 weeks after surgery, we had to ‘distract’ Elan’s bones or pull the femur head down from the hip socket so that new bone growth can eventually take place. This is done manually by the external fixator implanted on Elan’s hip. The fixator also takes the pressure off the hip and holds the ball and socket in place. Each day, Jan & I have to turn the screws in the fixator to get the job done. Unfortunately, this is very painful for Elan- especially at night.

We stopped distraction for a few weeks but then the surgeon told us to continue for this past week. Hopefully, this part of the process is behind us. We’re also starting to taper off the meds used to manage the pain. His smile and laughter continue to light up our lives… The great news is that Elan is getting better and will walk without pain once again.

Now, we wait to see and pray that all of this works. We won’t know until Elan’s ball begins to regrow if it’s perfectly round or not. In the interim, we keep him off his feet. The Drs. are very optimistic that Elan has an excellent chance for success and won’t require additional surgeries.

Elan’s guts, determination and attitude continue to prevail. In part due to his athletic ability, Elan’s physical therapy is going great. We have to fight for pool time because they want to get other kids in there. He rarely uses the wheelchair, preferring the walker instead. Elan is also learning to use crutches on stairs. He has made lots of new friends at the Hackerman-Patz house at Sinai Hospital - our temporary home away from home. Many of these children are here for limb lengthening due to dwarfism. Janet & I are thankful for sure as we get to know some of the other families that are staying here. Simply put, this has been a life changing experience for all of us.

Elan’s blog traffic is off the charts with over 4,000 visits. It, along with his distance learning program, are being featured by his school’s technology dept. If you get a chance, stop by and visit elansahipguy for daily updates, pics and… *please don’t forget to sign the guestbook. While you’re at it, check out some of the wonderful messages Elan has received from friends, rock stars and other Perthes families. Elan is hearing from folks from all over the world! Elan has certainly made the most of this experience with live calls from CBS sports during a basketball game, and visits from friends, his baseball team, US soldiers stationed in Iraq, and even the hooters girls.

Thanks so much for staying in touch! The cards, gifts galore, e-mails and calls have been wonderful so many thanks for that. It’ll be great to see everyone when we get back to Washington. I know that Elan will appreciate the company. In the meantime, we hope that you have a great end of the year holiday. Lots of love, mitch/jan/elan

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November 26, 2008

What do sick kids have to do with social media: Part II

Our son was recently diagnosed with Perthes. We are currently staying at the Hackerman-Patz Guest House in Baltimore while Elan recuperates. This note is a follow-on to the original post and continues the conversation about what sick kids have to do with social media.

Disclaimer: if you don’t have a 10 yr old (or, think like one), some of the players mentioned here might not make sense…

Use You Tube and other outlets to grow your brand- We took our son, one week out of surgery, to see the Naked Brothers band. It was a blast. We somehow got invited backstage to party with the band. We were also pretty jazzed to meet Polly Draper, the band’s mom. You can see some of the pics here.

Opening for the Naked Bros was Savannah Outen. We know her because of Radio Disney airplay. Her song is in heavy rotation during morning drive time. Savannah introduced herself to the crowd with two words- You Tube. Turns out that her song has something like a million views on You Tube. She pumped her myspace pages several times during the show and ended by taking pics of the crowd for her online scrapbook. Our son was lucky enough to meet her backstage and get this pic, which she promptly posted to myspace.

Times are a changin’ – Doctors and their staffs, Nurses, and other health care workers routinely tell us to go online and ‘talk’ to other parents. They confirm that parents offer some of the best advice around when it comes to dealing with difficult situations. Maybe I shouldn’t have been but, I was surprised to hear top surgeons tell us that parents in similar situations can offer accurate advice. This is of course true but I was still surprised to hear it. The Doctors actually encourage you to join and participate in unfiltered discussion groups. In the groups that we participate in, parents discuss and help each other arrive at pre and post-op decisions. btw, we found and connected with our surgeon through an e-mail list.

Community building ain’t easy- Our son’s website has 2,000 visits inside of 2 weeks. Facebook and Twitter has been a great way to spread the word about both the website and guestbook. Elan’s built an e-mail list, people write when he doesn’t post to make sure all is OK, he’s already tired. Elan has added pressure that most of us don’t face with his principle, teachers and many parents looking on There’s a direct correlation between journal postings and guest book entries. When he’s having a bad day or does something unusual, 25 people will post comments.

E-mail notifications has been a great way for people to keep in touch. We also send out a weekly broadcast that summarizes the week’s posts. Elan is developing his own personality and learning how hard it is to build a community UNLESS you’re passionate about it!

You can’t control your online persona- Some of our son’s first blog sightings and postings will be about what he’s currently going through. I can already see this here and here when I Google him. Is this a bad thing? Maybe not, I’m not sure yet. One thing’s for sure though- you can’t control the archives!

Nothing beats face-to-face- Elan is the proud owner of the new Mac Book. With Skype and broadband access, he’s able to often join his schoolmates and teachers. This is important as he’ll be out of school for an extended period of time. Elan is the first student in his school to put together his own distance learning program. We were supportive but not only for the academics. As you can imagine, Elan has many friends in the 4th grade. He missed them terribly.

Being able to see them during the day is a real bonus and eliminates some of the isolation. Nothing beats face-to-face though. Online interaction is a good supplement to the real deal. We’ll be happy though when our son can once again be in the same room with his friends.

Continue reading "What do sick kids have to do with social media: Part II" »

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November 11, 2008

Elan's school responds

From Elan's English teacher...

On another note, this past week the class learned that Elan Arnowitz would be having surgery on Friday, Nov. 7 and will not be returning to school until later in January. Elan has established a web site where he is chronicling his experience and he welcomes comments from the class. I encourage the class to communicate with him in this fashion and to consider visiting Elan in Baltimore as he becomes ready to receive visitors. Bikur Cholim is a middah that our class can readily fulfill this year.

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November 10, 2008

Elan- surgery over

Elan's hip surgery was this past Friday morning and it was a success!

Dr Shawn Standard of the Rubin Institute's International Center for Limb Lengthening, performed the operation. The center is part of Sinai Hospital in Baltimore, Maryland.

Dr Standard is one of two Drs that has pioneered the use of the external fixator in the treatment of Perthes disease. You can find out more about Perthes here and the external fixator here.

Elan’s hip still has a round shape and that’s a good thing. We also caught this condition in the early stages, allowing for a primary vs. salvage operation. Timing is very important with Perthes. It’s bad timing that Elan is old for this condition and the extent of his involvement. It’s good timing that we’re acting before the ball begins its re-growth stage. Surgery consisted of initially drilling a tiny hole in the growth plate. They then thread a wire from the growth plate into the femoral head. They think that this helps promote blood flow back into the femoral head. Keep in mind that Perthes is caused by an interruption in blood flow to the head or ‘ball’. Perthes kids often develop a limp and the risk in drilling is that it can increase this limp (interesting sidebar: for many of us, one leg is shorter than the other. My right leg is ½” shorter than the left one. It becomes noticeable when the discrepancy is greater than 1”).

The surgeon then released the tendons or cut the groin muscles. This is done to improve Elan’s range of motion. He then shot dye into the ball and x-rayed Elan’s hip so that he could see, in real time, extent of the damage. The Dr. also put Elan’s ball back in the socket. The shape of the socket is also OK. This is important for future prognosis or an early onset of arthritis, etc. The bottom line with the ball & socket is that we want the ball as round as possible so that it fits into the socket vs. the socket having to grow around a deformed ball. The last thing the surgeon did was the biggest part of surgery- he implanted the fixator into Elan’s hip. The fixator is attached by 6 large screws and includes a bar for distraction. The fixator takes the pressure of the hip and allows Elan to be partially weight-bearing. Most important, it pulls the hip or femur bone back and allows new cartilage and ultimately bone to take shape.

The Dr is very optimistic about Elan’s chance for success. Short term success is defined as regaining range of motion and eliminating pain. Long term success is avoiding additional surgeries, the need for a new hip or ongoing pain. Each child has a different outcome so there is a fair amount of a wait and see going on. The Dr thinks that this will do it and that no further actions will be necessary. We’re still sifting through the medical information that was shared post-surgery but it looks good.

We are cautiously optimistic. This was a big deal and a very big surgery- not the kind you want to put a 9 yr old through if you don’t have to. Elan is still recovering and we are still in the hospital. We are currently working on pain management with the epidural, IV and oral meds. Elan has started physical therapy and is slowly learning to live with a fixator for the next 4 months. As some of you know and have shared with us, it is more than painful to watch helplessly as your child cries out in pain. Hopefully, the worst is behind us.

As soon as Elan is up to it, we’ll move into our new ‘home away from home’ across the street from the hospital. Jan has set up our room at the Hackerman-Patz House. This is a guest house where we will spend our time with other fixator and limb lengthening patients. In between physical therapy, I’ll also be able to get some work done! Yesterday, Jan & I distracted Elan’s bone or turned the screw in the fixator for the first time. We turn the screw 1 cm. a day for approx. 2 weeks. Then, we wait for the ball to grow into the socket.

We have started a Website to chronicle Elan’s adventure. The Website has a guestbook, daily posts by Elan and pictures. The Website doesn’t include many of the details found here and is mindful that Elan’s friends are reading and participating. Additional contact info. follows. *Please continue to email Elan and sign his guestbook. His face lights up each time he reads an email or entry.

Elan is one incredibly brave kid. His smile fades from time to time but overall is holding up well. An anisteologist told us yesterday that Elan is a model patient, has a high threshold for pain and acting three times his age. Janet & I have a new hero and his name is

Send an e-card to Rm. 373

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November 02, 2008

Elan gets a fixator

As many family & friends know, our 9 yr old has Perthes disease.

On November 7, Elan will have an external fixator surgically mounted onto his hip. The fixator rests on the outside of his body and will be in place for 4 months. This device pulls the hip or femur bone back, allowing new cartilage to take shape. It is this cartilage that will ultimately form a new hip ball and socket for Elan. Once the fixator is removed, Elan will be in a brace for several months.

He will then use crutches and a wheelchair to get around. The key to this condition is to be 'non-weight bearing' until the new hip takes shape. Unfortunately, this process takes several years. The goal to any treatment plan is to create as round a ball as possible. This helps force a better outcome as Elan and his hips get older.

The external fixator procedure is out of the experimental stage and being pioneered in the country by 2 surgeons, one of which will do Elan's procedure in Baltimore, Maryland at the Rubin Institute's International Center for Limb Lengthening. The center is part of
Sinai Hospital. The center has been doing this work for the past 5 years and is seeing good results in older children.

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October 08, 2008

What do sick kids have to do with social media?

Well, actually a lot…

Our son was recently diagnosed with a rare hip condition. While not life threatening, it is serious and will require surgery and extensive recuperation.

We, of course, were shocked at the news. Elan is an outgoing, kind soul that goes out of his way to avoid stepping on ants. Intuitively, while my wife was finding solace through family & friends, I went online to research and connect with others.

Through social media channels such as e-mail lists, web forums, flickr, you tube, blogs, podcasts, social bookmarking sites such as delicious, online communities and Wikipedia, I was able to begin digesting different treatment options. There isn’t consensus in the medical community for Elan’s condition. Drs. generally support treatment options and surgery that they are familiar with. As bad luck would have it, we have to act quickly and make a decision that may impact the rest of his life.

I wanted to pass along the following social media pointers before I forget! Please keep in mind if you read this that we have recently visited with the best & brightest Drs in the US for this condition. Social media outreach is no substitute for medical advice. It can, however, help you make hard decisions and ‘fill in the gaps’ when considering options, opinions and agendas. It can also quickly connect you with other customers & patients to learn from their experiences.

Guaranteed that what you glean through social media won’t be on the hospital website or in the brochures!

Use social media for research & outreach- in addition to finding out who the best and brightest Drs are to deal with this condition, I sought out other families facing a similar situation- real people with real opinions. I contacted an e-mail list group owner that promptly sent me a research document- research not available through a Google or even Meta search. We still use this doc as a ‘cheat sheet’ when meeting with Drs. and exploring our options.

There is a small, hard to find, universe of leading physicians that deal with our son’s condition. Not only were we able to identify the Drs, but we were able to quickly get e-mail addresses and their preferred mode of communication. One of the treatment options that we are seriously considering came about by e-mailing an x-ray to a Drs. personal e-mail address- an address and advice that we received from an online community participant.

By tapping into support groups, we knew what treatment options the Dr would recommend before the appointment. Not only did we know more about the product but, we were prepared to ask intelligent questions based on that knowledge. We also gathered information on the Drs bedside manner, support staff and medical facility.

Nothing beats talking to customers. We have learned more about insurance, post-op problems, what the Drs don’t tell you, and Elan’s condition through support groups and wiki entries. E-mail lists and forums have ‘breathed life’ into the process. We have also been able to quickly get beyond statistics and studies that hospitals provide to connect with real people and find out what their success has been.

Even after a dozen years in the business, I am still blown away at the level of caring and emotional support that an online community provides- to complete strangers and newcomers alike.

Validate conversations & sources (be wary of evangelists)- we discovered that one of the online communities included many proponents of a certain type of treatment. This is not necessarily a bad thing but validate social media conversations! Dig deep into the relationship between conversations and companies.

Build relationships, facilitate rather than moderate- as you can imagine, emotions run wild when it comes to your child’s health. Take the high road in Internet discussions! Remember when your mom said that you get further with honey (or sugar or something like that)? Well, it’s true. No one can ever fault you for being nice. Successfully learning how to facilitate Internet discussions is a skill that takes time but will come in handy when dealing or delegating client social media assignments.

Set up an RSS feed or Google alerts- we do this every day for clients but forgot to do it for ourselves! We got this reminder from someone on an e-mail list... By setting up a newsfeed, you can capture updated stories and news. *Many of these stories that the MSM publishes are “feel good” in nature and give you hope. These are good to read after a long day of research and looking at boring medical information!

Online interaction to offline action- face to face meetings are always critical. My wife has connected with several families through a support group and is setting up off-line meetings. This just reminds me about all the event marketing that Tuvel does for clients.

To be continued…

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January 29, 2008

You know you're spending to much time in the hospital when..

This week has been like homecoming at the local hospital. My dad feel in the bathroom and put his head through the wall. My mom feel by the bathroom and ended up with a few staples in the head.

You know that you're spending to much time at the hospital when...

strangers know your name.

You're not fazed by the sight of bad accidents.

You even think of giving an accident victim a hard time for cutting in line.

You actually think the police care about your illegally parked car while a medivac helicopter is landing.

You instinctively sit by the outlet in case you run out of juice for devices.

The guard lets you back in the emergency room without checking in.

The cashier in the cafe knows you by name.

You can swap personal stories with the emergency room staff- at any hr!

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January 21, 2008

Older people do dumb things

Sometimes, you have to choose between family and family. Do you choose your immediate family, help your parents or... try to do 3 things at once?

We spent friday afternoon in Baltimore, Md. at the Drs office. Anyone that knows Baltimore-Washington, DC traffic patterns knows how out of hand things get on a Friday. Adding insult to injury, the immediate family (read to mean wife and son) had a dinner invite for early evening. We left the Drs office, strapped on our flying gear and somehow made it back to Washington, DC in time for dinner. I didn't stop shaking until dessert though. Comforting though was the fact that I thought my folks were tucked in safe and sound for the weekend.

Saturday was more nerve wracking. Turns out that my dad turned off the heat in the middle of the night. I noticed this but not until the next morning. Why do older people wait for you to find things out instead of telling you? And, when they tell you, there's always a story to go along with. After awile, the stories don't really matter.

Of course, temps outside are sub-freezing and dear old dad is walking around without a shirt. That might not sound so bad but the temps inside are way below normal and dad has flu like symptoms and problems to go along with it. All's well that begins well with the heat (of course) and my heartbeat returning in time for Sunday football.

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January 17, 2008

Insulin in the snow

One thing about elderly people is that they're incredibly calm. Washington, DC has had bad weather. Truding through the snow, like in a bad fairy tale, I made arrangements to move my folks temporarily into our house. My parents though, insist on staying put to 'wait it out. Go figure. Faced with the possibility of not being able to gove my dad insulin shots, I packed them up and took 'em home. it took me longer to pack meds than it did the clothes...

Tomorrow, we're off to the Dr. in between client calls.

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January 16, 2008

When did that happen?

I have officially become a full-time caregiver. A funny thing happened in-between cleaning, cooking, drs appts & hospital stays... I used to marvel at friends and family that found time to take care of loved ones. Where did they find the time?

Now, I realize that there's just no other way but to do what you have to do. I've also leaned, along the way, a hell of alot more about time management. I've also learned how important MY family is (more on that later).

On the good news front, it seems that my dad has Polychondritis. Why is this good? Because it sure beats the alternatives mentioned!

The other nice thing is that people are starting to mention this blog in conversation and relate similar experiences of their own. More on that later as well.

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January 15, 2008

Rubberband Man

Its always nice when a client faces similar real life experiences along with you. Such is the case with a current customer. It's always good to make a connection and there's no better way to do this than with family. How one interacts with family says a lot about the person (and, I know I'm getting older when I say things like that!).

Everyone does what's right for them and there are all types of circumstances but... I've always thought that family was an indicator & foundation that people were built on.

For myself, lately I've been humming Rubberband Man, a 70's hit (?) from the Spinners.

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January 03, 2008

Decisions, decisions

What do you do when 1 parent wants to go to assisted living and the other doesn't? Who decides? What do you do if letting them figure it out on their own and intervention doesn't work? There doesn't seem to be a good answer to this question. At the end of the day, you hope it's figured out before time fades away.

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January 02, 2008

Another day, more tests...

Spent the afternoon at Hopkin's. The staff was in less of a cheery mood now that the holidays have officially passed. I have grown to respect the docss that can translate complex medical terminology into English. Turns out that my dad will have another spinal tab and kidney biopsy tomorrow. This is actually sounds worse than it is?!@#$.

Spinal tap is done in his room and the kidney test consists of a needle. They need to test more fluid. Results take several days and this should confirm what's wrong. The steroid treatments have helped but come with side effects.

One of the more interesting aspects of hospital life is process. The whiteboard serves as a clearing house and includes docs, nurses and applications. The pecking order is interesting and people are careful not to step on ea others toes. There seems to be little mix-up considering how many times the beds are turned.

Can you tell I'm spending way to much time in hospitals?

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January 01, 2008

Sandwhich time

Today was our son's 9th birthday. he is a New Year's baby. I got a cell call from Johns Hopkins Hospital today, asking me to pick my mom up. Seems that guests aren't allowed to spend the night... I ending up cutting our son's birthday short to take a road trip to Baltimore. Especially painful was that we were 3 hrs away at the time.

It is befitting that I was reminded once again of the joys of belonging to the sandwhich generation. If only I could split myself in 3.

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December 31, 2007

Brain time

We found out that my dad has inflamed fluid surrounding his brain. The Drs think this is being caused by 1 of 3 things.

Last week, we checked him into Johns Hopkins, a top notch medical institution. Good news is that hes responding to the steroid treatment. I still have high hopes of getting him well and moved along with my mother. I have spent 2 out of 3 New Years Eves at Hopkins Hospital! Healthcare workers in these hospitals are passionate, loyal and have really good temperments.

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Assisted vs Independent living

For the past 2 yrs, I've been the primary caregiver for my parents. My mom suffers from short term memory loss and my dad is getting older! My dad was recently in Md based Shady Grove Hospital with an outer ear infection that turned to dehydration. All around bad stuff.

I'm currently trying to get my dad well enough to move. The plan is to move him and my mom into an assisted living facility. There has been much dissention in the family and between my folks themselves on assisted living. I've come to learn about some of the misconceptions surrounding indie and assisted living. Some days, I'm ready to move in there myself! Now, the trick is to get them down there.

Getting them ready has become a full-time job. I'm trying to get them moved out of a house that they stayed in to long, deal with drs, legal issues and a thousand other things. The biggest challenge is working around my parents while at the same time watching them get older. You can almost double your time when working with the elderly. This leaves lots of time for memories.

Off to deal with the ongoing battle between one parent that wants to go to assisted living and the other one that doesn't.

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November 07, 2007

The ark has landed

View image

Elan took his school project into class today. He, and another student, built an ark entirely out of cake!

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January 27, 2005

Good stories...

My 6 year old just interrupted to tell me that he has to do interesting things in his life so that he'll have good stories to tell his kids...

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December 09, 2004

Celebrating the festival of lights

On a personal note, our almost 6 yr old made the front page of the local paper. The accompanying story is actually about soldiers serving in Iraq.

Celebrating the festival of lights

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June 15, 2004

Graduation day

Elan, AKA The Flying Nun, graduates from pre-school today!

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