Our SLCH Schedule

In just over six weeks we will be driving back to St. Louis for a week of doctors' appointments and procedures with all of Jack's docs at St. Louis Children's Hospital. The last time Jack left St. Louis he was strapped to the floor of the van in a body brace following his spinal fusion surgery. (See it here.) This time there are no planned surgeries, although based on prior experience, that doesn't guarantee that there won't be a surgery. But if things go according to plan, this visit to SLCH should be a much more pleasant experience for Jack (and me).

I found out our final schedule of events this week and here's how things look:

Sat-Sun: travel Phx to STL

Mon: day of rest/visiting with friends

Tues: am - ENT
pm - Cardiologist

Wed: am - Orthopaedist
pm- Bronchoscopy (ENT) and EUA* (Ophthalmologist) two procedures under anesthesia
Over-night (7:30pm-7:30am) - sleep study to check ventilation

Thurs: am - ophthalmologist (will come directly from sleep study lab)
pm - neurologist

Fri: day of rest/visiting with friends

Sat-Sun: travel STL to Phx


Jack will see five specialists, have two procedures, and an overnight stay in the hospital all in a three day period. The best part is that all of Jack's appointments and procedures take place in the same building with doctors sharing information (and OR time) -- something that would never happen in Phoenix. Which is one of the main reasons we make the trip to St. Louis. SLCH is a top notch hospital and the physicians who care for Jack are some of the best.

The kids will be on Fall break and they all want to come out to St. Louis to see their friends and visit their old stomping grounds, so we are making a family vacation of it. Eric will travel with us by car and the girls will fly out.

Now, I just have to psych myself up for 30 hours in the car with "chatty cathy" (aka Eric) ;-)

Believe it or not ........... I'm excited about the trip. It just feels comfortable to be in STL with Jack's docs and all of our very good friends.

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*EUA = examination under anesthesia

You Know You're Old When . . .

> the friends you meet up with for happy hour on Friday evening are your grade school friends, some of whom you haven't seen in 33 years. (btw, it's amazing how little we have all changed.)

> the day after you bowled a few games with your 6 year old and his friend, you can't move your arm above your waist and you wish you could find that sling you had to hold your arm up.

> you are exercising at the Y and you spend your time looking at all the women in the room thinking to yourself . . . I hope I don't look that bad, instead of looking at all the young, buff men working out around you.

> you are walking through the isles at Target and you find yourself stopped in the vitamin section with a bottle of Caltrate in your hand. (I decided I'm not ready to go there yet.)

I may be old, but it beats the alternative so I guess I'd better make the best of it!

Have a great week and remember to enjoy the moment.

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Thanks to everyone who shared their personality. It was fun finding out more about you. Of those who shared, I'm the only "T" in the group. It's that darn "T" that takes all the fun out of life. I'm definitely too much of a thinker.

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What is your personality?

Years ago, Mark had me take the Myers-Briggs personality test. Based on the results, you couldn't put two more opposite people together than the two of us. However, I think in my case, I'm better off being married to someone who has the complete opposite personality than me because if I married someone just like me, we'd have killed each other by now.

I am an ISTJ and the characteristics of this personality type are quite accurate and gives some indication as to why I have such a difficult time coming to terms with the life that has been thrown at me:

As an ISTJ, your primary mode of living is focused internally, where you take things in via your five senses in a literal, concrete fashion. Your secondary mode is external, where you deal with things rationally and logically.

ISTJs are quiet and reserved individuals who are interested in security and peaceful living. They have a strongly-felt internal sense of duty, which lends them a serious air and the motivation to follow through on tasks. Organized and methodical in their approach, they can generally succeed at any task which they undertake.

ISTJs are very loyal, faithful, and dependable. They place great importance on honesty and integrity. They are "good citizens" who can be depended on to do the right thing for their families and communities. While they generally take things very seriously, they also usually have an offbeat sense of humor and can be a lot of fun - especially at family or work-related gatherings.

ISTJs tend to believe in laws and traditions, and expect the same from others. They're not comfortable with breaking laws or going against the rules. If they are able to see a good reason for stepping outside of the established mode of doing things, the ISTJ will support that effort. However, ISTJs more often tend to believe that things should be done according to procedures and plans. If an ISTJ has not developed their Intuitive side sufficiently, they may become overly obsessed with structure, and insist on doing everything "by the book".

The ISTJ is extremely dependable on following through with things which he or she has promised. For this reason, they sometimes get more and more work piled on them. Because the ISTJ has such a strong sense of duty, they may have a difficult time saying "no" when they are given more work than they can reasonably handle. For this reason, the ISTJ often works long hours, and may be unwittingly taken advantage of.

The ISTJ will work for long periods of time and put tremendous amounts of energy into doing any task which they see as important to fulfilling a goal. However, they will resist putting energy into things which don't make sense to them, or for which they can't see a practical application. They prefer to work alone, but work well in teams when the situation demands it. They like to be accountable for their actions, and enjoy being in positions of authority. The ISTJ has little use for theory or abstract thinking, unless the practical application is clear.

ISTJs have tremendous respect for facts. They hold a tremendous store of facts within themselves, which they have gathered through their Sensing preference. They may have difficulty understanding a theory or idea which is different from their own perspective. However, if they are shown the importance or relevance of the idea to someone who they respect or care about, the idea becomes a fact, which the ISTJ will internalize and support. Once the ISTJ supports a cause or idea, he or she will stop at no lengths to ensure that they are doing their duty of giving support where support is needed.

The ISTJ is not naturally in tune with their own feelings and the feelings of others. They may have difficulty picking up on emotional needs immediately, as they are presented. Being perfectionists themselves, they have a tendency to take other people's efforts for granted, like they take their own efforts for granted. They need to remember to pat people on the back once in a while.

ISTJs are likely to be uncomfortable expressing affection and emotion to others. However, their strong sense of duty and the ability to see what needs to be done in any situation usually allows them to overcome their natural reservations, and they are usually quite supporting and caring individuals with the people that they love. Once the ISTJ realizes the emotional needs of those who are close to them, they put forth effort to meet those needs.

The ISTJ is extremely faithful and loyal. Traditional and family-minded, they will put forth great amounts of effort at making their homes and families running smoothly. They are responsible parents, taking their parenting roles seriously. They are usually good and generous providers to their families. They care deeply about those close to them, although they usually are not comfortable with expressing their love. The ISTJ is likely to express their affection through actions, rather than through words.

ISTJs have an excellent ability to take any task and define it, organize it, plan it, and implement it through to completion. They are very hard workers, who do not allow obstacles to get in the way of performing their duties. They do not usually give themselves enough credit for their achievements, seeing their accomplishments simply as the natural fulfillment of their obligations.

ISTJs usually have a great sense of space and function, and artistic appreciation. Their homes are likely to be tastefully furnished and immaculately maintained. They are acutely aware of their senses, and want to be in surroundings which fit their need for structure, order, and beauty.

Under stress, ISTJs may fall into "catastrophe mode", where they see nothing but all of the possibilities of what could go wrong. They will berate themselves for things which they should have done differently, or duties which they failed to perform. They will lose their ability to see things calmly and reasonably, and will depress themselves with their visions of doom.

In general, the ISTJ has a tremendous amount of potential. Capable, logical, reasonable, and effective individuals with a deeply driven desire to promote security and peaceful living, the ISTJ has what it takes to be highly effective at achieving their chosen goals - whatever they may be.

ISTJs generally have the following traits:

• Value tradition, security, and peaceful living
• Will work long and hard to fulfill duties
• Can be depended on to follow through on tasks
• Loyal and faithful
• Stable, practical and down-to-earth
• Family-minded
• Dislike doing things which don't make sense to them
• Dislike abstract theory, unless they see the practical application
• Natural leaders
• Prefer to work alone, but work well in teams when necessary
• Extremely observant, they take in facts via their senses and store them internally
• Vast, rich inner store of facts which they rely on to understand problems which they encounter in their lives
• Profound respect for facts and concrete information
• Make decisions objectively, applying logic and rational thinking
• Dislike change, unless they are shown it's benefit in a concrete way
• Have strong opinions about the way things should be done
• Appreciate structured, orderly environments
• Have very high standards for their own behavior and the behavior of others
• Not naturally in-tune with other people's feelings
• Able to accomplish almost anything if they put their minds to it
• Community minded "good citizens"

The following list of professions is built on our impressions of careers which would be especially suitable for an ISTJ.

Possible Career Paths for the ISTJ:

• Business Executives, Administrators and Managers
• Accountants and Financial Officers
• Police and Detectives
• Judges
• Lawyers
• Medical Doctors / Dentists
• Computer Programmers, Systems Analysts, and Computer Specialists
• Military Leaders

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What are you? Take the Test Here. Read about your personality Here.

What is your personality?

Jack's Props

As I'm sure you've all figured out by now, Jack spends a considerable amount of time in bed. The reason for this is simple - it's where he is most comfortable. Jack has absolutely no meat on his bum, so it's not comfortable for him to sit in his chair for an extended length of time. And, because he has no muscles to support him, it also takes a lot of energy for him to sit in his chair and he tires after a few hours. We do try and make sure that Jack spends some time in his chair every day. During the week, Kristi is very good about getting him in his chair . But, I'll confess that we aren't as consistent on the weekends. Jack's bed is adjustable and has a built-in massager so we can sit him up at different angles and turn on the massager to keep his backside stimulated. We also use a lot of props when Jack is in bed. Here's a picture of Jack and all his props and because I clearly have too much time on my hands, I labeled the various props and provided an explanation of each one below:



A - drool rag. Jack doesn't swallow and despite trying almost every procedure known to man, we have been unsuccessful in reducing the amount of Jack's oral secretions. Thus, the need for the drool rag (a major thorn in my side, incidentally).
B - pillow to counter the effects of gravity and allow Jack to move his hands more freely.
C - blanket that holds up the vent circuits and helps reduce Jack's airleak and autocycling of the ventilator.
D - blanket that keeps the vent circuits (which are heated) from resting on Jack's skin. Jack's skin is so fragile that the vent circuits can burn his skin and/or leave a significant mark from the pressure of sitting on his skin.
E - stuffed animal that Jack's hand rests on and helps keep his fingers open (the fingers on his left hand are starting to contract in a closed position).
F - round log pillow under Jack's bum to keep him from sliding down when his bed is elevated.
G - pillow keeping Jack's leg from flopping outward (he has one propping up the other leg as well).

There you have it . . . everything you ever wanted to know (or not) about all the stuff in bed with Jack!

We did mange to get out of the house all together this weekend for Mark's birthday dinner. Here is a picture of Jack riding his lift out of the van. He's just so easy to please. A little fresh air, a change of scenery and a ride in the van and he's a happy guy.





I'll be glad when it starts to cool off and the temperature falls below 180 degrees (okay, with the wind chill factor, it's actually only 108) so that Jack and I can get back to our evening walks around the neighborhood.

Have a grand week everyone.

I Must Be Insane

I recently found out about a site - Blurb.com - that automatically slurps (uploads) your entire blog so you can save it as a book. I have now slurped my blog and I am in the process of putting together my book. There are lots of options for page layouts, colors, pictures, graphics, etc., so there is a lot of opportunity to customize your book. I decided to do one book for July 2006 (the beginning of my blogging) through December 31, 2007 (Volume I) and then do a separate book for each year thereafter. I started working on Volume I this week. The only bummer about this program is that it does not upload your comments and I've received so many wonderful, supportive, and entertaining comments that I want to save. I'm having to go through each blog entry and copy the comments and then paste them into a new page in my book.

My point ---> like I have TIME for this project?! I've been up until 1am the last few nights working on the book and I'm only into the first week of comments. I typically get to bed around midnight but I've now extended my late night/early morning project time another hour by adding this to my list of things to do. I must be insane! I really need to set a limit on how much time I'm allowed to work on this each night or I'll be incapacitated from lack of sleep very soon.

Another idea I have is putting together a book of all my email correspondence with Jack's doctors over the last nine years (amounting to hundreds of emails). It's interesting for me to see my emotional progression as it relates to the questions I ask Jack's docs, what I want from Jack's docs, what I want from Jack and how I've related my frustrations to them through the years. One of Jack's docs recently told me "you have mellowed beyond description in many ways". (he calls it mellowing, I call it throwing up my hands and saying "I give".) I think it would be really neat to publish a book and call it something like "Conversations with a Doctor". I'd use different names and alter the emails some to protect the innocent and, of course, I'd have to get everyone's permission first.

Wait a minute, am I talking about yet ANOTHER project?

Actually, I'll probably just start transferring the text of the emails to a book, but won't likely consider publishing anything until . . . well, until the story is over. (and let's hope that's very far off in the future.)

For those of you with blogs, I highly encourage you to preserve your writings in some type of book to give you something tangible to look back on. And, don't wait two years into your blogging to get started like I did unless you have lots of extra time on your hands.

It's now rounding 11:30pm and I've got emails to answer and an appeal to Aetna to work on and I'm only giving myself until midnight or else... I'll turn into a pumpkin ... or something like that.

Peace my friends.

A Stormin' Day

One week into school and Eric's daily assessment for today:

I had a Stormin' Day!!!
Comments: cleaning up and noisy in line.
Received a WARNING

When I asked Eric about his warning, his response: "well, it's better than what Emma got".

Good thing he's cute!

My Blog Followers

Best as I can tell, there are four groups of people who read this blog:

1. Those who I've actually met in person, but don't talk with often;
2. Those who I've never met, but communicate with electronically (via email or the Tracheostomy.com message board);
3. Those who I've never met and don't have a clue are reading; and
4. Those who I see in my real, every day life

I started this blog as a way to keep family and friends updated on Jack's spinal fusion surgery. Two years later and I'm still blogging. For the most part, I blog about the mundane details of every day life. I record pictures and share Eric funnies mainly to create a scrapbook of my life that I (and my kids) will always have to look back on. To the extent it has entertainment value for those who read, all the better. Then there are those times when I share my innermost feelings and thoughts with utmost honesty and frankness (because subtlety has never been my strong suit). When I reach into the depths of my heart and soul and write about the difficulties, challenges and triumphs of life, I share a very private part of myself that I wouldn't likely share face to face with you. I don't mind sharing such personal feelings because I figure for the majority of the people reading this, I either don't know you or I don't see you often enough to worry that you'll remember what I said.

It's much easier to write from the heart if I pretend that no one I know is reading. Problem is, I keep running into people I haven't seen in a while and they start out our conversation where I left off on my blog. Talk about a feeling of deja vu! It doesn't bother me so much that people I see in person know the goings on in my every day life, but the fact that they also know some of my most profound thoughts and they are right there looking me in the eyes . . . well, I feel so transparent. It gives me pause about putting so much out there for everyone to read.

However, blogging is very therapeutic for me and I also see it as the foundation for that book I hope to write some day. So, despite the occasional feeling of vulnerability, I shall continue to share all of my story with those I know, those I don't know and those I hope to get to know. Thanks for checking in, thanks for caring and thanks for sharing your comments.

P.S.

He's in school and he likes it (at the moment). Eric received a warm welcome from his fellow classmates yesterday - the majority of his class from last year is attending the same school Eric is now attending, which made for an easy transition.

Eric funny:

Last Friday when I was grumbling about not being happy with how they combined the Kindergarten class with the 1st grade class, I made the comment to Eric that I was so frustrated with the public school system that I should just put him back in private school. He said "yeah, like I was in last year". I told him that he was in public school last year too, but when he was in preschool, he attended a private Christian preschool. He pondered that for a few seconds and then said to me "I don't want to go to a non-public school". I asked him why? He looked up and pointed to the sky and said "Because I don't want to worry about what's going on UP there, I only want to worry about what's going on DOWN here".

Hmmm . . . I think I need to get him enrolled in RE class, post-haste!

Have a great day and,

May love and laughter light your days,
and warm your heart and home.
May good and faithful friends be yours,
wherever you may roam.
May peace and plenty bless your world
with joy that long endures.
May all life's passing seasons
bring the best to you and yours!

Old Irish Blessing

First Day of School

Mary's first day of school.

Notice the "Thank God I'm not a freshman this year" smile. Last year she had a look of terror on her face the first day of school.

Eric's first day of school.

Today was back to school day . . . except for Eric. We had a last minute change of plans. After missing "meet the teacher" night last Thursday, I called Eric's school on Friday morning to get information about his teacher and classroom. I was informed for the first time that Eric was in a combined Kindergarten/1st grade gifted class. My response to that news was ... no, I don't think so! I don't have a problem with combining the older grades, but all day Kindergarten is a huge adjustment for most kids and I think it's completely inappropriate (and stupid) to combine Kindergarten with 1st grade. I spent the majority of the day Friday on the phone trying to track down the Director for the gifted program (who, conveniently was in meetings most the day) to let her know that Eric would not be attending the school he was originally assigned to and the reason why. She agreed to move him to a different school where he would be in a 1st grade only gifted class. However, the paperwork wasn't finalized until today, so Eric got an extra day of summer vacation. Notwithstanding the extra day off, Eric is still complaining about going back to school. In his own words .... "I didn't ask to be in this family so I could be forced to do the things I don't want to do."

Ahh, life is rough, isn't it?

And speaking of the inequities of life, I received a letter from Aetna today denying my appeal because "custodial" care isn't a covered benefit. I find it interesting that they originally deny nursing all together saying that nursing in the home is not a covered benefit and then, when I give them copies of the plan summary that states that home nursing is a covered benefit, they switch gears and deny my appeal saying that Jack doesn't require skilled nursing, that his care is custodial. Did I not say that was what they would do? How can they make the determination that Jack's care is custodial when they haven't asked for any information about his nursing care?I addressed the level of care Jack requires in my appeal letter, but they apparently chose to disregard that information. I despise insurance companies. So, now it's on to the second level appeal.

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

Playing Hooky

There's nothing more energizing than playing hooky during the work week. I had a client who wanted to meet on our side of town rather than drive down to my office, so I decided that I'd rather not drive to the office today either. After I met with my client, I went to the post office and filled out the paperwork to get my passport (which I'll need for the cruise I'm hoping to go on in February) and then Mary and I went and got a pedicure. I also did a little shopping in between. It's really a good thing I'm not a stay-at-home mom because when I'm not at work, I'm out spending money.

The wonderfully relaxing day was topped off by a letter from Aetna informing me that my request for an expedited appeal was denied because only those services for which a delay in decision making "might seriously jeopardize the life or health of the member" qualify for an expedited appeal. HELLO . . . how skilled nursing for a child with an artificial airway who is kept alive solely by a machine that breathes for him 24/7 doesn't qualify as a decision that might jeopardize the life or health of a member is beyond me! I had to wait 72 hours for an expedited review of my request for an expedited review. Now I get to start the clock running on another 72 hours when I appeal their determination that my appeal isn't entitled to an expedited review. Are you following all this?! It really is maddening and when it's all said and done, I'll be at the 30 days mark for a typical appeal anyway. But, I can't not push the issue because I don't want to give them the impression that nursing isn't critical for Jack (which it is).

God grant me patience. In the meantime ... I think I'll have a beer.

CHEERS!


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I was so distracted by the Aetna letter (or maybe it was the beer?) that I completely missed Eric's "meet the teacher" tonight. I realized at 7pm that we were supposed to be at Eric's school between 5-6pm to meet his teacher. Should make for an interesting first day of school. *sigh*

Just Another Sunday

While we didn't manage to get out of the house together as a family this weekend, the kids (sans Jack) and I went out Saturday to do some clothes shopping for school. Notwithstanding the clothes falling out of over-stuffed dresser drawers and laying all over the floor, they insist they need new clothes for school. Actually, Eric was quite put out that he had to go to the Mall with us. He'd much rather have stayed home with his Dad and Jack. I told Jack as we were leaving for the Mall how I wish I was shopping for back-to-school clothes for him too. It amazes me to think that Jack would be starting 4th grade this year. It just makes me so sad to think about what should have been. But . . . it is what it is and it is okay (for the most part).

I went to see Mamma Mia today. I really enjoyed it, but Mary thought it was corny. It took me awhile to figure out the songs were ABBA songs. I go out to the movies about twice a year and I only like movies with happy endings. I don't like to pay money to walk out of a movie theater depressed. If you like musicals and want a light and entertaining movie with a happy ending -- I highly recommend Mamma Mia. (That's my review, for what it's worth).

Because I knew I wouldn't have much to share (life is really uneventful these days), I stalked my family with my camera today so I'd have some pictures to post:

Eric playing the Wii

Live action

Make an on-line slide show at www.OneTrueMedia.com

Mary caught first thing this morning

Happy Jack

Hanging out together

Why Can't He Talk?

I’ve been thinking a lot lately about why Jack can’t talk. There was a time when he could say a few words (very few), but after his anoxic event (a subject that’s still tough to recall), he lost the ability to say even his few words. He was also signing a bit before his event, but he no longer has the ability or strength to lift his hands enough to sign. For a long time I wanted to believe that Jack’s inability to talk was due to him being on a vent. However, this summer at the trach conference, I met Jacob – an amazing little boy who is also vent dependent and who can talk very well.

Jack has a form of muscular dystrophy called Muscle-Eye-Brain Congenital Muscular Dystrophy because all three areas are affected. The muscle issue is obvious. Jack was also born with congenital cataracts. Jack’s brain was affected in that he has moderate diffuse cerebral atrophy and absence of the inferior vermis and cerebellar tonsils. However, according to Jack's neurologist, when you are born with missing parts, your brain is much better at working around the deficits, and the impact is less than if the same brain parts were affected later in life. So, while it's likely that Jack may have some cognitive deficits because of his brain anomalies, he is clearly not a PVS kid. As one of Jack’s doctors recently put it “Although I can see where you might find some similarities, you’ve got to know that Jack is as far from being a PVS patient as George Bush is from being a good president!” (we were discussing an article about the feelings of pediatric nurses who cared for PVS patients). Jack is clearly tuned into his environment, he displays emotions appropriately and, if you spend enough time around him you’ll get to experience his very subtle, but very astute sense of humor. Jack is considered moderately MR (mentally retarded) - based solely on his inability to communicate. Yet, I know of many children who are MR, cognitively delayed, developmentally delayed, or whatever you choose to call them, who can talk quite well. They may not be able to write their name or multiply numbers, but these children can carry on lengthy conversations. Why can’t Jack? Where's the glitch?

I’m sure I’ve asked Jack’s neurologist in the past why he can’t talk, but I’m not sure I ever got a straight answer. When we go back to St. Louis in October, I’m hoping to meet up with Jack’s neurologist for lunch. She’s always been nice enough to go to lunch with me so that I can have more of her time than the 5 minutes I get during our appointment time. I’m going to ask again “why can’t Jack talk?”

Regardless, we continue to appreciate his smile and his laughter.

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God's poet is silence! His song is unspoken,
And yet so profound, so loud, and so far,
It fills you, it thrills you with measures unbroken,
And as soft, and as fair, and as far as a star.
~Joaquin Miller

Eric Funny

Eric: Mom, I have to stay up late tonight because I'm busy.
Mom: What are you busy with?
Eric: I don't know, I still have to figure that out.

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What a nut. I was thinking the other day that Eric was never really a toddler. He went from baby to grown-up kid right before my eyes. Well, technically he was a toddler, but it seems like once he started talking, he's been our "equal" in conversations. It will be interesting to see how First grade compares to Kindergarten for him. {interruption - see below}. As I was saying - this upcoming school year should be interesting. For that matter, life should be interesting with my little grown-up.

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As I'm sitting here at my computer typing this, Eric asked me if I had any blueprints. What? I asked him if he knew what blueprints were. Why of course, they are what you use to make plans. I guess he'll be busy making "plans" tonight. Heaven help me!

Midnight Musings

I guess it's time for an update. Where did last week go? It's after midnight and I finally decided to call it quits after spending most the day working on a project for work. I almost never bring work home (because who's got time to work at home?), but time is of the essence on this particular case, so you do what you gotta do.

We managed to stick to our commitment to get out of the house once a week, notwithstanding grumbling from the troops. Because it was cooler than usual yesterday (under 100 degrees) and cloudy, I thought it would be fun to walk somewhere for dinner. I absolutely dread putting Jack in the van - it is so much work to get him in and tie his wheelchair down. Because we have so many choices of places to eat that are within walking distance from the house, I'd much rather walk and push Jack's wheelchair than go through the hassle of getting him in and out of the van. While it was definitely cooler than normal yesterday, the humidity was much higher than usual - thus, the grumbling. We walked about a mile and everyone was pretty much a sweaty glob by the time we got to the restaurant except for Jack, of course. Oh well, at least we all sweat together as a family. That's really what it's all about - family time!

To respond to a couple of the comments on my last post. I've considered asking Kristi if she wants to come with us to Disneyland to help out with Jack. However, I'll let you in on a little secret ... Mark hates Disneyland. So, as far as finding a volunteer to go back to the hotel with Jack, not a problem. I also think it's important for Kristi to get a break from Jack. She works long hours for us and I know it can be draining and monotonous at times. I don't want her to get burned out and want to leave us. Kristi's been Jack's primary nurse for six years now. Our one-day a week nurse ditches us during the summer and goes back home to Minnesota to work at the Mayo Clinic there. She can't take the Arizona summers. Wimp! ("Hi Angie"). So, right now, Kristi is working five days a week and she definitely needs her weekends off.

Sarah, I'll be sure and let you know if we are coming and when. I'd love to meet up with you and your kids.

Jen - yes, the ventilator was loud in the theater (at least to me) and I was a nervous wreck the whole time worrying that it might be bothering someone. I really need to get over worrying about what other people think. It's something I still struggle with ten years into this journey.

And, I never fly with Jack, only drive. I flew once (back in 2004) and never again.

(and, Rachel and I have talked)

Yesterday's humidity brought thunderstorms today. I love an occasional thunderstorm that clears out the air and leaves that fresh rainy smell in the air. Here are a couple of pictures I took this afternoon when I was outside enjoying that wonderful after-the-rain smell. Just trying out my "artistic" side.





Happy Monday my friends!

. . . and can I tell you that there is nothing more annoying than finally crawling into bed at 1:30am only to be forced out of bed by an alarming pulse-ox which you discover registers Jack's sats below 93 not because he needs suctioning but because the new probe you just put on his toe is falling off. Some of you reading this know exactly how annoying it is. Grrrrrrrrrr

Final Weeks of Summer Vacation

Believe it or not, my kids only have three weeks of vacation left before they start back to school. Our school district is year round, so the summer breaks are short and the Fall and Spring breaks are extended. Since we don't have the luxury of spending our summers traveling from one vacation destination to the next (who does?), the kids are bored and ready to get back to school and their friends. We are contemplating a trip to Disneyland in August or September, but the question then becomes ... do we take Jack? It's not that we don't want Jack with us, it just changes the dynamics (exponentially) if we take him. If we decide not to take Jack, then Mark or I have to stay home which defeats the whole idea of a family vacation. Simple decisions become so much more complicated when you have to travel with your own PICU in tow.

The insurance "fun" has already started with our new insurance company. I received our first denial for home nursing care for Jack. Aetna claims that home nursing is not a covered benefit. Funny thing is, I've got a copy of the Plan Summary and right in black in white it says:

The Plan covers the following specialty and outpatient services, subject to applicable copay and any limitations shown in the “Summary of Benefits”:

• Home health services provided by a participating home health care agency, including:

- skilled nursing services provided or supervised by an RN.

Not sure what plan they are reading, but it seems to me it's quite clear that home nursing IS a covered benefit. I try not to allow myself to get angry over this kind of crap, but it still frustrates me to no end. I don't risk losing my nursing care over this bogus denial because Jack's nursing is covered by our State's vent dependent program (Medicaid). I don't really have to appeal this decision because we will continue to get nursing. However, it's the principle of the matter and just like with Jack's eye gaze communication system, even though Medicaid will pick up the tab, I refuse to allow insurance companies to get away with their lying and cheating ways. I'm sure after I point out that home nursing is a covered benefit, they'll find another basis on which to deny nursing. I'm going to beat them to the punch and address the most likely basis for denial in my appeal. More than likely the next basis for denial will be that Jack's care is "custodial" - ie: he doesn't required skilled nursing and that basically anyone can provide his care. You think I could drop him off at KinderCare and they'd watch him for me? Ignorant physicians stand in the position of medical director for these insurance companies. When we were in St. Louis the medical director for CIGNA asked me why I couldn't just schlep Jack and his vent to our local daycare. Seriously?!

Speaking of family outings, Mark and I are trying to be more committed to getting Jack and the rest of the kids out of the house at least once a week together as a family. There are many excuses as to why we can't take Jack out, but we've just got to push past them and do it! Jack needs to get out more, especially since his lame mom won't put him in school. We went to the movies this weekend - we took Jack and Eric to see WALLE (Hilary and Mary saw Hancock). Here's Jack checking out his Dots:


and Eric's sweaty hair-do:



That's all I've got from here. Until next time . . .

Smile and the world smiles with you

A Day Late ...

HAPPY 4th OF JULY

We had a quiet 4th of July around here. When it's 110 outside, all you really want to do is stay inside!

It was one year ago this weekend that my mom had surgery and was diagnosed with an incurable brain tumor (glioblastoma multiforme). We were told that she only had a year or less to live. I went to my mom's appointment with the oncologist on Thursday and her MRI is still clean. Remarkable! She's got a huge hole in her brain where they took out the tumor, but still no return of the tumor. I think the oncologist is quite impressed as well. The oncologist says he will take my mom off the chemo (Temador) in August (she will have been on it for one year at that point) and then, in his words ... "we hold our breath". I'm not sure I agree with his game plan because I have a friend whose brother has the same type of tumor and he was on the Temador for 2 years (with no recurrence) before they took him off. I think I'll do some research on this before our next appointment.

Also, on this weekend of celebrating our Independence, remember our troops (past and present) for all they've done to ensure our independence and freedom. I have a brother who is serving in Afghanistan right now. We are expecting him home safe and sound by Christmas.

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Just saw this on TV and thought it was very moving:

Have a great rest of the weekend. Stay cool, stay safe and enjoy time with your family.

More on Doctors

I recently visited a CaringBridge site for a little boy whose story I followed briefly. This little boy was a patient at St. Louis Children’s Hospital and over a year ago he passed away. Here is the most recent post by his mom on his site:

The words within his story have moved many people to spread the word about St. Louis Children's Hospital and Washington University’s medical neglect and death that they caused on our sweet innocent little boy.

I am truly sad for this family. Yet, I can’t imagine spreading the word that St. Louis Children’s Hospital is not a top notch place to take your child for medical care. After all, I travel 3000 miles (round trip) to take my child to see Washington University Physicians at SLCH – who I believe are some of the best doctors in the country. While I may not like the personalities of all of the doctors caring for Jack at SLCH, I am confident that he is getting the best of care there. Yes, doctors make mistakes. But don’t we all? I came to appreciate early on that doctors really are only human – contrary to what some doctors may think and what many patients and their families want to believe. Personality issues aside, I believe that the people who spend years in school and training to become doctors do so because they are good people who genuinely want to help others.

Without question, some doctors can be jerks and in almost all instances where I’ve switched doctors, the issue has not been competence, it’s been personality. But as much as doctors are a thorn in my side, I still have a tremendous amount of respect for all the education and training they go through and the fact that they are willing to take the emotional risk of practicing in a profession that is all about life and death.

This post isn’t about my opinion on this family’s decision to sue SLCH. My child didn’t die while under the care of a doctor at SLCH and I pass no judgment on this family’s actions. However, I really do think it’s tough to be a doctor because people want - and need - for doctors to have all the answers and for them to make everything right. As we know, that’s not always possible and yet, that doesn’t necessarily make it someone’s fault. Sometimes bad things just happen. That said, a doctor can go a long way in gaining understanding and forgiveness when things do go wrong if they have treated their patients and their patients’ families with compassion and kindness.

As I’ve quoted before:

Doctors are human beings who have some information or knowledge that will help our children. Some are very skilled, and many are average. They have strengths and weaknesses. They make mistakes in their work. If we don’t put them on pedestals, we won’t have to knock them off.

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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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!