…..the rest is not our business” T.S. Eliot

Samantha is not on antibiotics….for the first time in months.

Am I a little nervous that these nasty infections will come back? Oh yeah. But right now we’re holding steady. We’re trying some things that are a little non-traditional but what the heck, “for us there is only the trying.”

What are we trying? We’re trying Grapefruit Seed Extract to combat Samantha’s MRSA. I use it topically to clean her ears and they have never looked better. She HATES it when I touch her ears but she’s tolerating this…..I think because it feels okay to her. NO MRSA antibiotics. Keep your fingers crossed.

Samantha is also on fish oil to combat her high cholesterol from the Ketogenic diet. Lately I thought I could cheat and use the cheaper fish oil capsules. It’s all fish oil right? I found out that the ‘good fat’ concentration is much, much less in the capsules; the difference of thousands of milligrams less. So if you’re taking fish oil for health benefits, pony up and pay for the liquid, otherwise you’re just taking smelly fish pills; nothing more.

Just my two cents.

The last new thing we’re trying with Samantha is real salt. My smart blogger buddy Fawn over at Fawnahareo’s Place, disclosed to us that our table salt has sugar in it. Seriously, go get your container of Morton’s, at the bottom it states that it contains dextrose.

Sugar… in our salt. This seems very silly to me. Table salt has also been stripped of anything our bodies might need.

REAL salt contains minerals necessary for the proper functioning of our bodies; substances that help to make up the proper chemical balance of our blood. When Samantha gets sick, she has a hard time maintaining her potassium, calcium and other minerals found in her blood…..all of these things are found in ancient sea salt. So off to Vitamin Cottage we went for ancient, all natural sea salt with 50+ trace minerals including iodine.

Have I completely lost it? Analyzing labels? Tweaking? Trying? Reading the Morton’s salt container?

Perhaps. But as healthy people, our bodies can handle and process quite a lot.

These fragile little Muffins however need to work with what is optimal for them….the best fish oil with all sorts of fatty nutrients, pricey, salty, salt loaded with minerals and no trace of sugar.

Will it make a difference? “For us there is only the trying, the rest is not our business.”

Today’s post….Memento, can be found Under the Cuckoo Clock.

Have a lovely day 🙂

I am preaching to the choir here but I have something stuck in my craw and I must clear it….

Bear with me.

Blogiquette….how do you behave when on someone’s blog?

I only ask because I have seen some nastiness out there lately….some mild, some downright appalling. I wonder what makes people feel that they can post anything on someone else’s blog.

Well they put it out there….

This seems to be the number reason for posting unhelpful, even insulting comments on another blog.

Here is my comparison…..to the put it out there comment…

You invite me to dinner….we don’t know each other that well and I’ve never been to your house but I accept because you seem interesting and mildly entertaining.

I show up and immediately comment that I hate the color of your entry way. I scrutinize your family pictures and say your Aunt Helga looks looks like a man. I traipse into your house while wearing my muddy boots and talking too loud.

You hand me glass of Merlot. I say I prefer Chardonnay. I also dislike the Louis Armstrong CD you’re playing, your carpet is too scratchy and the Ansel Adams above your fireplace is incredibly outdated.

And you’re a dork.

Through dinner I disagree with everything you say. I hate your meatloaf. I leave with my muddy boots still on, kick your cat and throw up in your rose bushes.

When we visit another blog, especially a family blog, it’s a personal look into someone’s life. It’s an invitation into their world; their home. So many times I have said “I’ve been on your blog and I feel like I know you already!”

Because I kind of do…..because you have allowed me into your life.

Yes, it’s been ‘put out there’ so to speak, but just because it’s out there do we have to say exactly what we think of every comment?

I really am not a fan of meatloaf but would never say it to a host.

Because I am a guest. To my discredit, I personally can be a loud, boisterous, opinionated guest but I hope, I HOPE, I have the foresight to know when I have stayed my limit, when it is time to thank my host for a lovely conversation and move on.

May we mind our manners….when it comes to meatloaf and blog posts.

It was a good Easter!

The last three Easter’s of Samantha’s life have been hard.

Easter #1: We had just taken Samantha home from the hospital after her diagnosis of Infantile Spasms She was on heaping doses of meds and proceed to seize her way through Easter.

Easter #2: Samantha had an undiagnosed UTI and again had seizures through Easter.

Easter #3: Easter number three itself was good….we spent the weekend in Vail with Pops and Nonnie. But we were in the hospital until Good Friday due to yet another infection. Samantha did score an awesome bunny that week from the Aurora Police Department so we had that going for us but still….tough time during Easter.

This year, Samantha has been fighting another MRSA infection. We’ve changed antibiotics and I’ve packed a hospital bag twice this week thinking we might be admitted.

But our girl has held strong.

Last night she was clearly uncomfortable; her third sick night this week. I rocked Lil’ Miss at 3:00 in the morning thinking of how many plans we would have to cancel today, what I would pack for our hospital bag and contemplated how crowded the E.R would be on Easter.

And then her Daddy came into the room.

And he got her to sleep.

And she slept….and slept….

until 10:30 this morning. Samantha wasn’t on her ‘A’ game today; more of a C+ game but the new antibiotics seem to be finally kicking in. She sat on Grandma Judi’s lap and enjoyed the day. She even sat outside and watched her cousins and Grandpa Jim hunt for Easter eggs.

Grandpa Jim is on crutches right now so he kind of ‘hopped’ for Easter eggs with the basket around his neck….pictures are to come.

We could just enjoy the holiday….that’s even better than a Reese’s peanut butter egg….Thanks Easter Bunny!

Mama’s snoozing on the couch; probably because I’ve been keeping her a little busy. Fang I and Fang II wrecked havoc on my mouth and overall disposition. They also like to bother me around 3:00 in the morning…therefore they bother Mama around 3:00 too.

I’ve decided to let her nap on the couch. It’s okay Mama, I’ll handle today’s post….

with pictures of me!

I have found a new hobby.

My masterpiece. I loved art therapy and worked for an hour with my hands.

Onto my career as a musician…

Lovely Laura comes once a week and sings songs to me. I’ve started to pitch in a bit too!

I also helped Grandma Judi celebrate her birthday!!!

I don’t look great here because I was fighting another ear infection. But sitting on Grandma’s lap and having a bite of Aunt Jen’s fabulous cake seemed to make me feel a little better!

Happy Birthday Grandma Judi!!!! I love you oodles.

This week my great-uncle Glenn passed away.

He was 90. He lived an amazing life. He was healthy, and he didn’t suffer.

But that doesn’t mean I won’t miss him….

Not that I talked to Uncle Glenn everyday, every month or even once a year but I like the idea of the world with Uncle Glenn.

He was a great story teller. When my ‘Popa‘ (Glenn’s younger brother) passed away, I couldn’t make it home for the memorial service. I was crushed. I missed my Popa and I didn’t know how to say good bye. My family sent me a tape of the service. Uncle Glenn had given the eulogy and told fabulous stories of Popa…..

Popa running naked down the street at age three.

Popa destroying Grandma Chappell’s flower beds.

Popa being….Popa…and how much his brother loved him for the man he was.

I hadn’t seen Uncle Glenn in years but he had given me a treasure. He had given my stories of my Popa.

Later, Uncle Glenn wrote a book about his life; World War II, growing up as a preacher’s kid, finding his true love and the parable that accompanies living.

I am lucky enough to have a copy.

I love this book. I love the stories of my family. I love that I am related to someone small enough to be a ball turret gunner. I love the relationship he developed with his crew.

I would also like to know what beauty secret was shared in the 1930’s and 40’s because everyone, everyone in the photos is gorgeous. I’m embarrassed to say I went through the book ogling at my great-uncles thinking wow, he was quite a looker.

Priceless….this book is priceless.

I am realizing more and more the power in our stories and the beauty in a life shared. I hope someday my grand niece might be just as interested in her crazy Great Aunt Heather.

Perhaps our stories are our true legacy.

To the Simms‘…..wish we could be there tomorrow. Our thoughts and prayers are with you.

To Uncle Glenn…..Tell Popa to behave. Give Jack a kiss.

“Where are her teeth????”

We get this a lot. Samantha is 3 1/2 and has no teeth. She will sport you a big, toothless grin, nibble on your pinkie, but no teeth. They are hiding up in her gums but they refuse to make an appearance.

We have several theories on why….

Theory #1: Samantha is tube fed. Tube fed babies get teeth later than orally fed babies because they don’t bite or ‘gum’ food. There is nothing to push the teeth through. However, many of Samantha’s tube fed buddies now have a full set of choppers.

Theory #2: It takes a lot of energy to push teeth through your gums. As Samantha’s body is rationing how limited energy is to be spent, teething is not a priority. I agree with theory #2 but many kids with mitochondrial myopathy have teeth.

But honestly, I don’t care. I monitor seizures, infections and any other health conditions Samantha’s body throws our way. Teeth? Teeth are an after thought. We’re not trying to feed her a steak and baked potato.

A couple days ago I was brushing her gums and noticed two little front, bottom teeth poking through. They are knobby, angry, little daggers but they are right there….
Samantha’s teeth. I have named them Fang I and Fang II.

I tried to take a picture but all you see are her angry swollen little gums so we’ll wait until Fang I and II make a more pronounced debut.

For me, with my vast medical experience (HA!) it means that her body is feeling stronger. She is not fighting C-dif, MRSA, Pseudomonas, or other little beasties that like to set up residence. I guess when I put it like that, I really do care that she has teeth.

Welcome Fang I and Fang II.

It is an odd night….

And the country is divided….

And I am unsure if I should post this….

A couple days ago, I stumbled across another mom blogger Erin who is a member of the LDS church, who posted her support of gay couples and gay marriage.

It was a very brave post.

In honor of her bravery, I will post this. AND I will ask you, if you don’t agree, just (as Erin said) click away.

I am relieved tonight….congress passed health care reform. I am not happy because so many people are unhappy. But I am relieved.

We have a lot of work to do and this bill is not perfect. But as a person who spends a lot of time negotiating with insurance and hospitals, something has to change.

Two months ago I stood in line at the Children’s pharmacy. I was behind a woman who was trying to get a prescription for her daughter. It was a prescription for her daughter’s heart.

Her husband had just lost his job. They had no coverage for this prescription.

“But it’s for her heart.” The woman pleaded with the pharmacist. “I have to have it.”

They went back and forth. I was about to pull out my credit card to pay for this prescription….how much could it be? , I thought.

$600 for a ten day bottle.

Sadly, I put my credit card back.

The woman went up to talk to the doctors to see what could be done. She left without the heart medication.

My heart broke.

You may have laughed at my last post about waiting 18 months for a bed. But the truth is….we’re still waiting.

1.85 million Americans will go bankrupt this year due to medical bills.

In the end, we are all people just trying to live a good life and insure our children will also live a good life. I hope we all remember this in the days to come.

P.S…..laughing at the last post was a good thing 🙂

I love good customer service….

Ask me how my day was, thank me for my business, return my calls and I am putty in your paws.

Ever since Samantha, companies have to follow through on what they promise. It’s a matter of her health, her livelihood, and in some cases the difference between being at home and a hospital stay.

One time a company delivered 30 blood-glucose monitoring kits instead of 30 cans of ketogenic formula. I was panicked and quite unhappy. In retaliation, I learned how to make our own ketogenic formula.

We have ordered a hospital bed for Samantha. She needs to have her upper body elevated at night and as she gets bigger I need to have a bed we can raise and lower.

We have been working with insurance and a DME (durable medical equipment) company for 18 months to get said hospital bed.

I am not a patient woman by trade…but I am trying. Really…..

A couple months ago I called the DME company to see what the status was. Our rep…Mr. L, was not in so I left a message.

A week later, I never got a return call so I left another message…waited….no return…another message…waited…no return….you see a pattern here don’t you?

Every message I left got a little snippier. I tried to keep my cool but really, we’re waiting 18 months on a bed and our rep doesn’t return my calls?

After three weeks of one-way phone tag, I called and asked to speak to the manager.

“Yes, I’m trying to get the status of our bed order. I’ve left numerous messages for Mr. L. and he hasn’t returned my calls. Frankly, I’m getting a little tired of this.”

“Oh,” said Miss Manager. There was a long pause on the other side. “I am so very sorry. Um….Mr. L died three weeks ago.”

Died?

My heart stopped. All those messages I left; those snippy messages….talking about the importance of good customer service….Mr. L. had died.

I felt like an ass. Should I feel like an ass? I didn’t know. What is customer service protocol when someone dies?

I took a deep breath and a step back from the situation. “I am so very, very sorry.”

We talked about Mr. L and what had happened. We talked about how awful I felt leaving messages. Finally, I had the nerve to say it…..

“You know….it’s been three weeks, perhaps you should forward his phone so people won’t leave messages expecting to get a call back.”

“Yes, I know. We need to do something but we’re just so sad.”

I never knew Mr. L personally….only a phone call or two but I felt like I should send flowers or something.

I did abandon my original plans to pull the order all together. So, they still have my business and we still wait for the bed.

Some things you just have to let go. Rest in peace Mr. L.