Wednesday, July 30, 2008


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

Monday, July 28, 2008

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 ................

Thursday, July 24, 2008

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.


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*

Sunday, July 20, 2008

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

Mary caught first thing this morning

Happy Jack

Hanging out together

Thursday, July 17, 2008

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.


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

Tuesday, July 15, 2008

Eric Funny

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.

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.


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!

Monday, July 14, 2008

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

Tuesday, July 08, 2008

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

Saturday, July 05, 2008

A Day Late ...


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.


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.

Wednesday, July 02, 2008

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.