Truly Thanks Giving
How honored to be able to post right after Thanksgiving. This post actually started forming a couple of days before the holiday, on Thanksgiving itself as well as the following days.
I am by all accounts a fortunate person; someone who can truly be thankful. I have a great family and friends. My children made it to their twenties alive and healthy- happy too I hope. It’s not so with everyone, with all families. In my life I have seen and heard people display the most amazing acts of courage. I am humbled and I am amazed. Here are a few of their stories. I hope that you will carry them with you throughout this holiday season.
Aidan’s Monsters
Aidan Quinn is five years old and likes drawing monsters even though he is fighting his own monster leukemia. During a recent ABC news interview this courageous five year old shows a picture he drew showing how tough he is getting shots-he loves to draw. His family has insurance but even with insurance there is a $250 co-pay for each treatment. The family was at risk of losing their home. Aidan’s aunt had an idea-sell copies of Aidan’s artwork on line to help cover his medical expenses. Aidan’s monsters look pretty much like any five year olds might. But 4,000 copies of his drawings have sold for $12.00 each. Thanks to all 4,000 of you.
Bowens Heart
Bowen Hammitt was born in September with a congenital heart defect. A few short days after his birth his parents were notified that Bowen had gone into cardiac arrest- that his young heart had stopped beating and that the staff was beginning compressions. For over 45 minutes the staff worked while the parents agonized. The mother stated she kept expecting the doctor to look at the clock and to call out a time- marking the official time of death. But Bowen survived. His father, lead singer of an Emmy nominated Christian rock band started a blog about Bowen and wrote a haunting song, “All of Me.” Bowen eventually had surgery and on the date of his surgery over 200,000 people visited the blog and many left comments of support for the family.
“The Bear’s Castle”
One year ago on Thanksgiving day, in Florida after finishing their meal six year old Makayla Sitton was murdered along with three other family members. Makayla had been home schooled by her mother and on many occasions Makayla’s Mom would use a tape recorder to save some of Maykala’s stories. On one of these occasions a story unfolded about a bear and a unicorn. An incredible story called “The Bears Castle.” The book is illustrated by Tyler Hollis who also lost a daughter. The killer, a member of the Stitton’s extended family and an invited guest has been recorded twice admitting to the killings. In spite of this no trial has begun- no justice has been served. In spite of this the parents went forward with the book- to keep a small piece of Makayla alive.
Danny and Marlo
I saw a young girl interviewed along with Marlo Thomas. This girl was diagnosed at a local hospital as having an incurable cancer and only weeks to live. She went to St. Judes and is now in remission. Marlo reminded us that no child is turned away due to their ability to pay. Again all supported by the warmth and kindness of the human spirit.
There is so much courage in these stories. There is also so much about the nature of the human race and how we may be touched and how we may reach out to help a stranger. Finally there is so much about how much sharing and telling can make a difference. Thanksgiving a time to give thanks and to thankfully give.
But for the Grace of God…
Following is a list of sites for more information on any of these stories.
- Aidan
- Bowen
- http://bowensheart.com/our-story/
- http://bowensheart.com/2010/09/15/the-morning-of-september-14th/ (to hear his father’s song)
- Makayla
PMD: 2004 – That Which Does Not Kill Us…
You know how there are some things in life that are pivotal – something happens, and it changes the way you see yourself or others around you…and sometimes it even changes your life. Well in 2004 Pediatric Medical and I hit a bump in the road – and neither of us would ever be the same after.
I mentioned in a previous post that I had a family friend who had offered to help us make PMD a reality, someone who was both a friend and mentor to me. Well by March 2004 the two of us were off and running discussing strategies for bringing the “PedREST” (our child seat for safe ambulance transport) to market and making plans for Pediatric Medical’s path forward. I was literally on Cloud 9 and nothing could bring me down. 🙂
Within a month I started working producing an animated marketing demo (something she felt strongly would really help folks understand why the PedREST was so important). I hired some animators from California and after a couple of pretty intense working sessions the project was complete. Video in hand, I headed to her home for the weekend.
I know in hindsight that this may sound silly, but at the time I was feeling pretty darn good about what I’d accomplished in such a short time…I had this really cool 3D-animated demo to show her, we had a meeting setup for the following day with a potential investor whose support was going to make it possible to bring the PedREST to market by the end of the year…and more importantly, for the first time I felt like I had finally proven myself to her– why else would she suggest sitting down to discuss our future as partners together. I honestly couldn’t have been more psyched …or more wrong.
My first hint that our time together was not going to be anything at all like I expected occurred within moments after I arrived. After a hug and a hello, we sat down at a table with her friend – the lawyer. We spent the next two hours talking about why she should have more than 50% share in the company (…after all, she would be contributing a large sum of money – significantly more than my sister and I put together – shouldn’t she be in control of it?) AND why we should buy out (think – cut ties to) my sister (…didn’t I know the inventor of the idea doesn’t usually maintain a share).
For hours we went around and around on the same questions – why wasn’t I willing to drop Suzanne …why wasn’t I comfortable giving up control of the company and …how long would it take for me to think things through and make a decision so we could move forward? We could draw up the paperwork that weekend if I liked and include the money she had “loaned” me for the demo.
Loaned??? Wait a second – when had the money she promised me for the demo that she wanted me to create become a loan??? My head was swimming. I honestly had no idea what to do at that point. While I was incredibly psyched that she believed in our project enough to invest her own money (she was in fact the investor we were to meet with the following day), there was no way I was booting my sister. I had made a promise – a commitment to her – and I was going to see it through. Finally, I asked for time to think about it (at this point I felt brain-dead), and we wrapped up for the day.
It was at that point when I remembered (@*&#%) I wasn’t leaving…I was staying at her home for the night.
About an hour later we sat down on her couch and she asked if we could talk (…of course in my mind, she hadn’t meant for the day to go as it did…I just had to give her a chance to explain and apologize). Wrong again. Instead I spent the next hour hearing how I was making all the wrong decisions in my life…why wasn’t I married yet (or even dating someone seriously)? Why wasn’t I in a different career? Didn’t I realize this venture was going to take several years to come to market??? (I should be in a much better financial position than the one I was in).
I’d like to say that I was stronger – that I picked myself up, grabbed my bags and walked out of there – but in truth I just sat there in disbelief…and went to sleep that night feeling utterly crushed.
Thinking back on it today, I recognize what a Pivotal Moment that day was… The reality was that I was upset with her for being the tough, focused business-woman I had always been impressed by. Except – she was being that way with me – something I never in a million years expected. To her this was purely business,and she was treating me like an acquisition target when I considered myself family. She had compartmentalized and I had not. And although that day I felt totally betrayed, I also learned a couple of things about myself:
First – I had always said my word was my bond, and I know I believed it when I said it…but my word, my character, had never really been tested until that day…and I am truly proud to say I passed.
One other thing I learned that day was that this woman I had always admired and idolized – I did not in fact want to “grow up to be like her”. I might never be anywhere near as powerful and successful as she was, but surprisingly enough that didn’t matter the way I thought it would… once I saw what it would take to get there, I was unwilling to pay the price.
Life is funny sometimes. The experiences we live…the choices we make…for better or for worse they define who we are… Did I make the right choice? Perhaps not if it turns out that the PedREST never makes it to market. Or maybe so, because the path I chose led me to Pediatric Safety. I guess for now the jury’s still out, although for those of you kind enough to join me on this journey, I’d love to know what you think…
Until next time…
2010 Toy Guide for Differently-Abled Kids now available
This year’s toy guide for differently-abled kids is now available from Toys R Us online and in stores. Featuring actress, author, philanthropist and mother Holly Robinson Peete, the guide explains which developmental areas each toy addresses. There are also inspiring quotes from special needs parents sprinkled throughout the booklet.
All items in the booklet are available online with free shipping or at your local store. Layaway is also available.
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Editor’s Note: There is a new version of the Guide available every September. To get on the mailing list to receive next year’s Guide, send an email to DifferentlyAbled@toysrus.com
Why Sniffles Hit Hardest At Night
When your child wakes up coughing or complaining of an earache, it’s tough to know what to do. And many common ailments — from asthma to croup — worsen in the wee hours.
Lying down plays a role in most colds and sinus symptoms “because it causes secretions to drain into the throat and may obstruct drainage happening during the day,” says Dr. Michael Steiner, pediatrician and director of the Child & Adolescent General Clinic at the University of North Carolina at Chapel Hill. “Plus, any pain, discomfort or fever will seem worse when children and parents are tired.”
Children may also feel more sick at night because they’re less distracted by activities, adds Dr. Mobeen H. Rathore, chief of Pediatric Infectious Diseases and Immunology at Wolfson Children’s Hospital and the University of Florida College of Medicine in Jacksonville.
Learn how to help your little one feel better when he’s sick at night, no matter the ailment. Just remember, says Rathore: Call the pediatrician whenever you’re unsure or concerned, day or night.
EARACHES
This common childhood pain is usually caused by a bacterial or viral infection in the ear (sometimes due to a nasty cold or allergies). Fluid builds up behind the eardrum, and lying down adds pressure to spots that are already sore and inflamed.
Treatment: According to the American Academy of Pediatrics, approximately 80 percent of children with middle ear infections recover without antibiotics. Shocking, since about 50 percent of antibiotics for American preschoolers are prescribed for ear infections! If the pain isn’t severe, help your child feel more comfortable with a pain reliever such as acetaminophen, says Rathore. (Don’t use aspirin, which has been associated with a rare but potentially deadly condition called Reye’s syndrome.) A warm compress may also help.
When to call the doc: Chronic ear infections can cause hearing problems, so it’s important to monitor symptoms. Red-flag symptoms include severe ear pain and discharge from the ear.
STUFFY NOSE OR SORE THROAT
Symptoms from the common cold tend to flare up at night. “When you lie down, the airways are more likely to become clogged with mucus,” says Dr. Neil Schachter, author of The Good Doctor’s Guide to Colds & Flu and the medical director of the respiratory care department at Mount Sinai Medical Center in New York City.
Treatment: While there is no cure for the common cold, moms can employ a few simple, reliable tactics to help kids feel better. In addition to age-appropriate OTC remedies, a humidifier or steam from a hot shower may also ease congestion so your child can breathe easier. Rathore suggests using acetaminophen to relieve sore throat. Schachter also suggests gargling with salt water before bed “to remove virus-laden mucus from the throat, which relieves both sore throat and coughing.”
When to call the doc: Routine colds don’t require a doctor’s care, but watch out for any other unusual symptoms, including a high fever, distressed breathing, or a sore throat that’s severe or lasts longer than a week.
CROUP
Most common in children 5 or under, croup causes swelling in the trachea and larynx. It’s usually caused by a virus and characterized by a loud, barking cough. “Croup symptoms seem to worsen at night, possibly because the upper airway naturally relaxes during sleep, so it narrows,” says Steiner. “It’s also possible that using a heater at night dries out the air and makes symptoms worse.”
Treatment: Although mist treatment was long thought to manage croup, a 2006 study published in the Journal of the American Medical Association found that high humidity didn’t seem to help moderate to severe cases. Still, for mild bouts, a warm, steamy bathroom may soothe symptoms. A dose of children’s ibuprofen or acetaminophen can bring down swelling of the airways. More severe cases may require a prescription drug to open airways.
When to call the doc: If your child makes noisy and high-pitched sounds when inhaling, struggles to breathe, develops blue or grayish skin, or has a fever of 103.5 F or higher, it’s time to see the doctor.
ASTHMA
A poll by the market research firm Harris Interactive found that 45 percent of asthmatic children have woken up in the middle of the night due to asthma. “There are variations in pulmonary function through the day and night due to circadian rhythms,” says Steiner. “At night, pulmonary function decreases slightly, which is likely responsible for symptoms being worse.”
Treatment: If your child is asthmatic, you already know how to keep things under control: Preventive, long-term control medications reduce inflammation in the airways, and a quick-relief medication should be used when necessary.
Your child’s late-night asthma could also be triggered by a common bedroom allergen like dust mites. Corral the critters by keeping the room clean and uncluttered. Use a vacuum with a high-efficiency particulate air (HEPA) filter once or twice weekly. Once a week, wash bedding and stuffed animals in hot water that’s at least 130 F. And finally, encase the mattress and pillows in an airtight zippered cover.
When to call the doc: If you notice that nocturnal asthma is disrupting your child’s sleep, make an appointment to review his asthma action plan. The pediatrician may need to adjust the type and/or timing of medications.
PMD: 2004 – Repeat After Me…Must Have CIP
By the end of 2003, we had received our first office action from the US patent office (USPTO), and filed an international PCT. Our attorney notified us that we would probably receive 2 more office actions before we were through and we should have our patent confirmed within 12 months – 17 on the outside.
Now for those of you beginning the patent process, I feel obligated to tell you that the words “office action” will likely become the bane of your existence. For reasons too numerous to count, it is almost unheard of that a patent will be approved when it is first submitted. But on a positive note, you’ll have a chance to improve your patent claims making your own patent stronger and more difficult to infringe. The downside is cost, so be prepared for this and budget in advance.
By April 2004, we had filed our 2nd office action response as well as a “Provisional Application” – later to become our first “Continuation in Part”. It is here that I need to pause. A Continuation in Part or CIP is typically filed to add some new feature and/or better clarify some existing feature(s) previously disclosed – what it boils down to is that you have, for all intents and purposes, open claims on file with the patent office. It makes it very difficult for someone to take your patent – look for features you didn’t claim – and then design around it.
BTW – this is not a secret…big companies everywhere have been doing this for years to protect their intellectual property from other companies that might try to “borrow” their ideas. It’s us little guys – the individual inventors – that don’t know this…but we NEED to! I have made a commitment and intend to honor it that if / when the PedREST makes it out to the market, I will take the next 6 months off to teach small inventors everywhere the mantra I repeat regularly: “Must Have CIP”.
In fact there were 2 key lessons that I’d like to share with any of you thinking about starting this process:
- First…it requires a little extra paperwork (and funds), but if possible, when you file your patent application, file it in a way that DOES NOT allow it to be published until it is granted.
- Second…at some point before your patent is finalized, search your specs for features you did not initially claim and any additional design modifications you’d like to make and FILE A CIP.
We didn’t do the first…fortunately for us, we did the second… And it saved us… Trust me when I say there will be more to come on this, but for now hopefully these 2 lessons will save you from some of the heartache my sister and I were soon to experience.
Until next time…
Jay K. | Matthews, NC; Sun., Aug. 15, 2010
This is clearly over-due ! ! The sooner the better ! !