Lookin' Good

Despite the fact that the "rock star" look is in, Jack got a much needed haircut. We took him down the street to the Barbershop and a very nice gentleman cut Jack's hair. I called ahead to give them a heads-up about Jack and they were great with him.






Tonight we decided to venture out in the heat and go out to dinner together as a family. I now know why we don't do this very often. There was a lot of complaining going on from the minute we got in the car to leave for dinner until we arrived home. Of course, it didn't help that the air conditioning in the van isn't working very well and it is 110 degrees outside.

Can you tell how happy Mary was about our evening out ~


Jack, on the other hand, was very happy to get out of the house ~


Until next time .............. Carpe Diem!

FFT Friday - Quotes

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What lies behind us
And what lies before us
Are tiny matters
Compared to what lies within us.
~ Unknown

Happiness is a butterfly which when pursued is always just beyond your grasp, but which, if you will sit down quietly may alight upon you.
~ Nathaniel Hawthorne

It is not because things are difficult that we do not dare; it is because we do not dare that things are difficult.
~ Seneca

Experience is what you get when you do not get what you want.
~Anonymous

Patience is the companion of wisdom.
~ St. Augustine

In the middle of a difficulty lies opportunity.
~ Albert Einstein

A knowledge of the path cannot be substituted for putting one foot in front of the other.
~ M. C. Richards

It is good to have an end to journey toward; but it is the journey that matters, in the end.
~ Ursula LeGuin

Kindness is the noblest weapon to conquer with.
~American Proverb

The quieter you become the more you can hear.
~ Baba Ram Dass

Life is a promise; fulfill it.
~ Mother Theresa

The purpose of life is a life of purpose.
~ Robert Byrne

Living involves tearing up one rough draft after another.
~ Author Unknown

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Have a wonderful weekend!

When the Sun Goes Down

What do you do when the sun goes down?

go for a walk ...

to Cold Stone Creamery to get ice cream :-)

and, stop to look for bugs on the way home .... of course!

These are cell phone pictures, so they aren't the greatest. Btw, Mary says I take "too many" pictures. Would you not agree that one can never take too many pictures?!

Who me?

Someone is in desperate need of a haircut!

Jack hasn't had his hair cut since March. His personal hairstylist moved to Maryland and we haven't found a replacement yet. It looks like we are going to have to break down and take him into a salon. There is a new Barbershop by our house - I think it's time to venture out.

Stay tuned . . .

Change

Change is in the air at our house. Last week, Mark started a new job. Mark has had so many jobs over the years as a result of the moves we've made, downsizing and acquisitions. When Mark got on with Edward Jones (8 years ago), we really felt - and hoped - that he would finish out his career there. EJ is a great company with great benefits. Unfortunately, for reasons we will never understand, the person who was Mark's peer (and purported "friend") who then became his boss less than a year ago, made it her mission to destroy Mark's career at EJ. As much as we didn't want to leave the great benefits that EJ has, Mark had no choice but to leave the company. He is back working for American Express, the company he worked for before we moved to St. Louis in 1996. Amex is another great company and while change is always difficult, we feel like it is a good move. It does create more stress for me because of his hours, but I'm trying to just take things one day at a time. I'm also hoping to get some more nursing hours lined up. As for Mark's former boss, I take some comfort in knowing that "what goes around, comes around."

For us, a change in jobs is more than just a change in who is writing the paycheck. The most important thing to consider when making a job change is, not surprisingly, the medical benefits. Before Mark accepted the job with Amex, I spent over an hour and a half on the phone with their benefits person (including a conference call with the representative from Aetna) asking questions and posing every conceivably scenario until I was satisfied that we could make the job change. Most importantly, I had to make sure we could still take Jack to St. Louis for his care (I'm told we can). The last time I dealt with Aetna was when Hilary got her cochlear implant (in 1995) - which they initially denied, but approved on appeal. I just hope that the transition to the new insurance company will go smoothly (ya think?) At least we got United Healthcare to pay for Jack's eye gaze system before Mark left EJ.

Not much else going on here. It's hotter than hell (literally) - 113 degrees today. But, it's a dry heat :-) I'm usually not outside during the day, so I don't really notice the extreme heat (except in my monthly utility bill) - but this weekend I was out and about more than usual and it really is HOT out there!

Mary is home from New Jersey (she's tired and crabby); Eric is bored (according to him, he never gets to do anything); Hilary is a hermit and Jack is doing great!

That's the update from here my friends.

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Since none of us will let Eric watch Sponge Bob for the 1000th time on the big TVs, he's resorted to the portable DVD player. He's quite the Sponge Bob addict ... I hope this is just a phase!

More Pictures

Even more Conference Pictures if you are interested.

A Sensitive Soul

Last night I fell asleep while laying next to Jack in his bed. We were listening to Jack's iPod - which had classical music loaded on it. I was awakened from my sleep by the sounds of Jack crying. I looked over to Jack and he was literally sobbing and had tears running down his cheeks. It wasn't an "I'm hurt" kind of crying, it was an emotional crying. As I looked at Jack and listened to the music (I can't tell you what song was playing), I remembered another time when Jack was moved to tears by the music. When I asked Jack if he wanted me to turn off the music, he stopped crying and smiled. To be perfectly honest, it's really scary how "deep" this kid is.

The other time Jack cried over a song it was the Carpenters' song Solitaire - which is a really sad song, but I would never have thought Jack was paying that much attention to the words or could even understand the words. I have no idea what moved Jack to tears with the song that was playing last night since it was an instrumental and had no words.

I've said before that Jack is wise beyond his years. How many 9 year olds do you know who are moved to tears by music? Whenever I question how much Jack really understands, I am reassured that he understands a whole lot more than I do after events like last night. Sometimes I wonder if Jack truly is an angel on earth sent to be my teacher. Or perhaps that's just wishful thinking on my part to help make some sense out of the life that has been bestowed on Jack ... or perhaps I've just lost my marbles after too many years of sleep deprivation.

Regardless, Jack is not only a wise soul, he is a sensitive soul too.

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Here is the video I put together for the Trach Conference:

Layover

Update:

Link to more Conference pics taken by a mom from our Trach Board who is also a professional photographer.

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Eric and I have an hour layover in Houston so I thought I'd share a few pictures from the Trach Conference. It's been a long and busy week, but it sounds like everyone enjoyed themselves at the conference. The amount of work involved in traveling with a trached and for some -- vent dependent, child is overwhelming and I am so appreciative of all those families who made the effort. We already have the date picked for our next conference (in 2010), but I'm tucking that information away for now and I'm not even thinking about it for awhile.

Heading home

It's time to board the plane. I have a cute video of Mary and Eric dancing -- I'll post it when I get home tonight.
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Here's the video - it cracks me up in the beginning, you can hear Eric's new friend, Berkeley ask Eric "do you want me to save you?"

Photo and video editing at www.OneTrueMedia.com

I just have to add how proud I am of Mary. She is such a wonderful and compassionate person who is so good with our "special" kids. She told me that after every Conference, she has a new "favorite" kid (or kids). While Eric and I headed home, Mary headed to New Jersey for the week. She will be representing our family at my niece's high school graduation.

Wishing you all a good week!

Hi from Cinci

We made it to Cincinnati safe and sound. Yesterday we drove down from Columbus and then spent some time down at the riverfront. Eric is having a great time, but man . . . can that kid talk (nonstop!) The Conference officially starts this evening - so, everyone will start arriving today. It should be fun. I'll try and update through the weekend.

Ahhh, the life of a world traveler --
now this is what you call roughing it (NOT)

Weary travelers

Lunch down at the Riverfront

TouchStones of Compassionate Care

I got my new project out the door today, so I finally have some time to share the details. As many of you may remember, several months ago I participated in a "Dear Future Physician" letter writing campaign initiated by a first year medical student as part of her "Reflections in Doctoring" course. The primary message I tried to convey to our future physicians is to "allow kindness and compassion to guide you and, above all else, be a physician who cares".

After writing the letter, I felt compelled to find a way to extend the message in my letter so that it would reach and impact as many young physicians as possible. I came up with the idea of having pocket stones engraved with the words Kindness, Compassion and Care, and providing young physicians with one of these stones to carry in the pocket of their white jacket as a tangible symbol and reminder to always strive to provide compassionate care to their patients and their patients' families.

I ran the idea by several physicians and one of the PICU intensivists who took care of Jack when he was a baby has agreed to be one of the first to try the program. She is now the Director of Critical Care Medicine at Johns Hopkins. If the program proves to be successful (ie: it has a measurable impact in serving as a reminder to physicians to practice compassionate care), then the plan is to reach out to medical schools and hospitals across the country.

It was suggested that it would be powerful for young physicians to see pictures of Jack through the years while listening to the words of my letter. So, I put together a DVD of me reading the letter with a montage of Jack and I included the DVD with the pocket stones I sent out. Here is what I put together:

Make an on-line slideshow at www.OneTrueMedia.com

I'm excited about the project and truly hope it can make a small difference in encouraging our future physicians to practice medicine from the heart. **

**Anyone who has connections at a medical school/Children's hospital that might be interested in the program, please email me. Anyone interested in providing financial support for the program through The Willow Tree Foundation, please email me.

Score!

I received a letter in the mail yesterday that provides, in part:

Based on the information reviewed, we are pleased to inform you that the Speech Generating Device and accessories that John Schrooten will receive from Eyetech, is approved for coverage.

Score one for the little guy! I knew it would be approved on appeal because United Healthcare-less denied the device on a completely bogus basis. UHC cited an exclusion that didn't even exist in the policy. Imagine if we didn't have DDD (Medicaid) as back-up insurance. UHC's b.s. denial would have cost Jack a six month delay in getting the device. It's just so wrong and, unfortunately, the norm for how insurance companies operate.

Onward ...........

Anyone Home?

Yes ... I'm here! Sorry for the lack of updates. I've got two significant projects I'm working on right now (the Trach Conference and my "Dear Future Physician" project) and work continues to be out of control busy. I seriously have no time to sit, think and write. The Conference is next week and I have to get the other project out the door before I leave for Cincinnati. I will share the details of my "Future Physician" project with you soon - I'm really excited about it. If I can just get through the next two weeks, life should calm down after that (at least in theory).

Eric is so happy to be out of school for a couple of months. The girls are enjoying sleeping in until noon and Jack likes having a house full of people during the day. Life - on the home front - is quiet, uneventful and good.

Here are Eric graduation pictures as promised:

The all important Kindergarten diploma

Eric and his teacher

If you think you’re too small to make a difference, try sleeping in a room with a mosquito.
(African proverb)

Have a great week and go out there and make a difference!