844

844 is a significant number. If someone gave me $844, I would be pretty happy.

I try to stay away from the super-duper fudgy cream pie containing 844 calories.

An 844 mile road trip would take a while.

Because 844 is a hefty number, it’s not a thousand, it’s not a million but it’s a lot.

On Monday, our super-smart mitochondrial doctor commented that Samantha had gone through a significant amount of tests, I asked him how many he considered significant.

“844.” He replied.

“Samantha has had 844 medical tests?” I asked

“Yes, 844.” He replied in his super-smart Belgian accent.

It’s a lot of tests….especially for a three year….that’s almost a test a day. I’m old and I don’t think I’ve had 844 tests. 844 tests at my age would mean I would have to take 21 tests a year. Even during my school days, that’s quite a lot of exams.

And I really wasn’t a scholar.

Some of these have been repeated….often. Every UTI lab analysis is recorded, every metabolic panel, every blood draw…but still.

Heather, 844? Really? And they still aren’t sure what’s going on?

Well, we’re narrowing some things down. When I think of genetic testing, I think of the game Clue.

Remember Clue? Colonel Mustard, in the library, with a pipe? One of my favorites; I was never very good however. I would lose track of who guessed what and I have a sneaking suspicion my brother would glance at my cards when I wasn’t looking.

In the genetic, crazy DNA world, imagine Clue with 23,000 different characters, thousands of different rooms and just as many different outcomes.

That would be a really, really long Clue game; perhaps requiring 844 different guesses (847 now….we ordered a couple other tests)

We are lucky in the fact that we have really good detectives….crazy smart CSI, DNA type detectives. They can sniff out Colonel Mustard in the library….sniff ’em like a bloodhound…all 23,000 of them.

Bug Cake! By Samantha

While my mother has been busy posting inappropriate topics on the blog… parading around in skimpy outfits and fleece socks…. relaying waaaaaayyyy too much information about my ear….I have been busy doing what I do best….

Being absolutely adorable!

This was my bug cake celebration.

Our friends Jen and Michelle kindly asked a friend of theirs to make a ‘bug cake’ for my third birthday. Since I had been fighting so many bugs this year, we thought it would be appropriate to have a bug party and show the bugs who was the boss. Unfortunately I was in the hospital…with a bug on my birthday, so the bug cake celebration was put on hold.

This was her amazing creation. How lucky are we to have such good friends!

Bug Cake kept well in the freezer but there was no way our family could eat such a cake. We needed a grand celebration in order to enjoy such a grand creation. Fortunately, Samantha’s cousin was willing to share her birthday. What a girl!

Birthday girl

Making a wish

MMMMMMMM….bug cake

I think I approve!

Oh yes, bug cake is the best!

Really, really quite tasty!

And I’m full.

Thank you, thank you Jen and Michelle (Fred and Kathy too for storing said bug!) The only thing that could have made it better would be to celebrate with you.

If it looks like snot, smells like snot….tastes like????

Okay, I do draw the line at taste.

For the last month, Samantha has had this goopey, nasty looking stuff draining from her ear. She hasn’t been feverish or seemingly sick so I’ve just been cleaning it out with a q-tip and a little hydrogen peroxide.

I’m a little gross in that I kind of enjoy cleaning goopey, nasty stuff out of her ear….I’m an immediate gratification girl.

The ear stuff looks like snot. I have joked that Samantha would be the type child to have a runny ear instead of a runny nose. It’s just the way she rolls.

It doesn’t seem to be bothering her, snotty ears don’t bother me and in a valiant effort to avoid Children’s Hospital we’re all trying to manage this at home, without antibiotics.

It was a good try.

Last week Samantha had a bladder infection, her token snotty ear, a seizure and stomach issues. I threw in the towel and loaded up the car to Children’s.

The doctor looked in her ear. “EEEEEEWWWWWW.”

“I think it’s snot,” I said.

“Heather, it’s not snot. Snot comes from your nose….this is….”

Are you ready?

Here it comes

“discharge…

filled with pus”

Ugh….give me snot any day.

So the ear pus was cultured and found to be (yet again) MRSA positive.

Poor Peanut.

We were sent to the ear, nose and throat doctor to have everything cleaned out.

“I could have sworn it looked like snot,” I told our ENT doc

“Oh it’s snot. Yepper…it’s all your sinus cavity…all comes from the same place.”

Ah ha! My snotty suspicions have been validated and it sounds so much better than

discharge

filled with pus

Ick.

Lil’ Miss is hanging in there despite her crazy mother chasing after her with a q-tip and analyzing the findings…..and despite having yet another MRSA infection. She is quite a trooper.

She also says the next post is hers.

Drama Lama bo Bama

Living in northern Colorado, the balloon boy drama has unfolded in our backyard. I admit I am guilty to reading the TMZ posts as I check my email. I watched the news this evening, reporting ‘breaking news’ about the family…..

Yes, I am guilty to succumbing to this media fiasco.

There is something different about this story however…..As a family who lives in a constant state of drama, it’s hard for me to imagine someone wanting to create MORE drama for themselves.

My hubby asked me last year what I wanted for Christmas……

“I no longer want to be the family that consistently receives sympathy or get well flowers” (this was after Bart’s father passed away and I had accepted our 5th sympathy arrangement)

Don’t get me wrong. If you would like to send me flowers I will GLADLY accept them…..‘no get well’ or ‘thinking of you flowers’ please…just ‘Wow! I loved your kitten heal pumps! flowers’…those would be good.

We would love to be the boring couple down the street.

So it is hard for me imagine someone inviting a circus into their house.

I have a small overnight bag packed in the car (at all times!) in case we have an emergency trip to Children’s and I need a clean pair of undies.

So it is hard for me to imagine someone staging a situation where there child is in jeopardy.

AND (this hits close to home!) we rely on the emergency services of Larimer County to be here at a moments notice should we need them.

So it is hard for me to imagine someone planning a situation that take 80 different Larimer County EMS teams out service while they look for a balloon with no balloon boy.

Yes, Samantha’s Mom has succumbed to the BB hype. So I say no more! This was about getting attention for a reality show? Alrighty then, no more Rock of Love, Wife Swap, Nanny 911, Hell’s Kitchen, Toddler and Tiaras, Dallas Cowboys Cheerleaders, or Jon and Kate Plus Eight for this stay at home mom…..no sireeeee.

I’m focusing on other drama….we had a lovely weekend (pics to be posted!), the Snider family welcome beautiful baby boy Porter….named after my Great Grandma Nonnie. And Get Born friend welcome Baby Opal at her home birth…..

Good drama…solid drama….positive drama….life….you can’t make that up…no matter HOW many CNN trucks you call.

Do I really have to give up Rock of Love?

Donuts!

I entered a writing contest a month ago…the premise of the contest is below…

“You are the sheriff of Absaroka County, Wyoming. It appeared to be an ordinary day, but then …”

We couldn’t exceed 500 words…I didn’t win but here is what I came up with 🙂

“Sherriff?”

“Dammit Joe….this better be important. It’s early and just got myself a coffee and bear claw.”

“Lucy Miller’s running around town.”

“Again? She’s not …is she….?”

“Naked as a jaybird.”

“The usual place?”

“Uh huh. They’re scheduled to bury Bill Jones at 10:00. The caretaker’s beside himself and won’t step outside until Miss Lucy’s gone.”

The Sherriff grabbed his coat, a robe from the lost and found and was out the door. He could only imagine the maelstrom should the poor Jones family find a naked, 90 year-old woman running around the Absaroka County cemetery.

He pulled in through the gates. On a hunch he drove over to Lucy’s husband’s grave. He could see her body laying still in the grass; her long grey hair blowing gently in the wind. Oh no, she’s dead, he thought.

The Sherriff ran over to the body, “Miss Lucy, Miss Lucy?”

Lucy rolled over to her back and opened her eyes. “Well hello Sherriff.”

He let out a long, relieved sigh and then remembered the task at hand. “Miss Lucy, come on now. You know you’re not supposed to be out here…..naked. It’s cold. Put this on and let’s go.” He tried to lay a robe on top of her exposed body without looking at anything.

“This is my favorite place Sherriff and he is right here, aren’t you, John?” She giggled and rubbed the grass gently with her hand. “The grass tickles my bum. He used to tickle my bum.”

He blushed at the thought and tried to focus on something else. The caretaker peeked out the window and then darted behind a curtain. “Please Miss Lucy, the Jones funeral starts in an hour.”

She slowly sat up, the robe falling off her shoulders. “Well, who am I to hold up a funeral.”

“Thank you ma’am,” He bent down to help her up when Miss Lucy got a wide eyed-look and pulled away.

“Sherriff! Sherriff, did you ever see him?”

John Miller died before the Sherriff started working in Absaroka County. He never knew the man, only the legend that brought a 90 year old woman out in her birthday suit.

“No Miss Lucy, I’m sad to say I never saw him.”

“Oh, he was,” she sighed and held a blade of grass to her cheek, “intoxicating …. fabulous.”

“I’m sure he was fabulous. I’m sure you both were.”

Her eyes snapped open. “Still am.”

A florist truck pulled up to the funeral home. The Sherriff heard a loud discussion and the panic in the caretakers voice….crazy lady, naked, don’t get paid enough for this crap. “Miss Lucy, it’s time to go. We have donuts at the station house.”

“Donuts! When life hands you donuts….you should eat them.” This time she did get up and much to his relief tied the robe. Her hands held clumps of grass.

“Can we leave the grass here?”

She held the grass to her nose and inhaled deeply. “Course not, John wants a donut too.”

I’m bringin’ sexy back

Hubby was gone last week on a business trip. As any parent of young children, sometimes you gotta spice things up. I decided we needed a lovely dinner for two, little wine, little music, little candle light to celebrate his return.

That’s right my friends…spicy!

Friday afternoon- crab legs are on sale…mmmmmmm crab legs.. Chocolate eclairs are on sale! Wine…well there is always room for wine. Romantic dinner shopping is done.

4:00- Magazines, newspapers, Samantha’s toys, clothes and untidy medical equipment are put away. Candles, jazz and wine glasses are set out.

5:00- Flight from New York is delayed

5:30- Delayed even later….crab legs are put back in the frig…wine and eclairs remain on the counter.

6:00- Flight has finally left…two hours delayed

7:00- Leftover pizza…crab legs will wait until tomorrow.

8:00- Samantha in bed….I’m bored. TBS is showing Coyote Ugly

8:05- Coyote Ugly is an awful movie

8:30- Bart’s plane hasn’t landed…three eclairs have been consumed. I pour a glass of wine, take a bath and paint my toenails

9:00- Deciding that Bart will be home sometime tonight, I search my closet for some cute pre-wedding, little Victoria Secret outfit.

9:30- I’m cold….it’s 27 degrees outside. I accessorize my little outfit by donning a pair of thick fleece socks.

10:00- I cuddle up on the couch with the down comforter and the nightly news

10:02- I have a conclusion…..lacy outfits are not meant to be worn for long periods of time. Lace is scratchy, itchy and really not warm at all. The only comfortable part of my body is my feet…which are wearing fleece.

10:05- I change into my flannel pj’s…the ones with the penguins playing hockey. If I know one thing in this world, I know this……there is nothing sexier than pink, flannel penguins playing hockey. Unless you happen to have a full length flannel granny gown.

10:06- I make a note to add a full length flannel granny gown to my Christmas list

10:11- zzzzzzzzzzzzz……..

11:00- Braving icy roads, high winds and delayed planes….hubby has returned… returned to his drooling, penguin clad wife, snoring on the couch….

That’s right….I’m a delicate flower….

Good Grief????

It’s something I deal with on a daily basis…being the mom of Lil’ Miss. It’s a feeling that has many facets. An emotion I bring out every once in a while. An emotion so powerful it can literally consume you…an emotion that is divided into other emotions because it is so complex….

Grief……

……it seems to be in the water lately.

The on-line mitochondrial community has lost a couple kiddos in the last month. My local special needs community has lost two children. I attended a ladies’ night based on grief and today my blogging community is dealing with loss and sickness.

In the words of Charlie Brown….good grief….

There seems to be a lot of questioning the universe. Why us? Why not us? Why her? Why him?

Our lives are based on what is reasonable and common sense;
Truth is apt to be neither.
Christmas Humphreys

You can’t handle the truth! Jack Nicholson

We can’t handle the truth, can we? Because if we dealt with the nastiness in life every minute of every day we would wear our grief like a shroud. I have encountered these shrouded grievers and it’s not a fun way to live. Grief in copious amounts tends to ooze; like a nasty septic wound..…draining life from us.

We still have to laugh, we still have to play, we still have to live….life carries on…

….and on

….and on….

Books on grief crack me up. It’s such a personal, intimate experience…grieving. We all have our own timeline based on our own relationships and our own personality. There is no guideline, there is no standard.

My personal Grief is a little Imp that shows up from time to time. I’ll be in my car, driving along listening to music and I’ll catch Grief in the corner of my eye.

“Hey Heather.”

“Aww crap, what are you doing here?”

“It’s been a while. I thought I would stop in for a visit.”

“Well, make sure you fasten your seatbelt and be quiet. Samantha’s sleeping and I don’t want you to wake her up.”

“Can I change the station?”

“No.”

“Can I play with the window?”

“No, you can just come along for the ride.”

Sometimes Grief shows up at a party…..drinks my wine, eats my last bite of fudgy dessert. It’s an annoyance really but since Grief is not a constant life guest, I have learned to tolerate the time we spend together. Sometimes we even enjoy an introspective moment of two.

After Grief has left, I always seem to enjoy the flowers a little more, the sunset and of course the time I spend with Samantha.

Grief will visit, it’s part of raising Samantha, it’s part of losing Jack. It’s part of vision I had for my life that will not come to fruition. But Grief knows he is not allowed to stay.

We can’t have a permanent impy, uninvited, grieveous house guest…we don’t have the room…not in our lives, not in my heart…life is too short and dispite the bad things that can happen….life is too sweet.

Fighting the Good Fight

Every evening…..

After Samantha has been cath’d, changed into her pj’s, the oxygen turned on, the meds delivered, her tube site cleaned, formula prepared and the feeding pump primed and ready for the night….

…..her Daddy leans down, kisses her head and says “Good night Samantha, keep fighting the good fight.”

This is part of our routine….just as important as oxygen, just as vital as seizure meds….keep fighting the good fight.

Sometimes (not often but sometimes!) he will forget and just kiss her head. “You have to tell her,” I’ll say. “She can’t go to bed until you tell her.” He will then give her double kiss and remind of her nightly task. Between you and me, I think he forgets on purpose just to kiss her cute little forehead again.

Yep….just as important as oxygen.

Filter Free

I’m not sure if it’s my aging mind, lack of sleep, PTSD or a combination of the three but sometimes the filter between my head and mouth does not work quite so well.

This can be problematic.

Since we spend SO much time at Children’s, I have been asked to sit on a couple boards; giving my opinion from a parents point of view. This is very helpful for all caregivers but I do have to remember to bite my tongue from time to time, scale down my anxiety, my angst, my frustration. I have to remember to use my filter.

I forgot my filter on Friday.

I was sitting at the table telling our latest story. The story of Samantha, the nurse and the 106 degree temperature. Out of my mouth popped “That nurse is just lucky to still be here.”

Oops.

That was kind of harsh to a TCH board. I was told later that I never sound upset or vindictive when I talk about our hospital stays……until Friday.

I tried to explain that I didn’t mean any harm in the statement. I was just upset and that sometimes when I get that upset I wish I could morph into a praying mantis and bite the heads off of those who seem problematic; those who are getting in the way of our care. (For those who are frightened and confused, please see Morph from July 09)

Well, wishing to bite someone’s head off didn’t sound very friendly either did it?

Where is my filter?????

Not sure if TCH will invite me back 🙂

This evening I was watching a Discovery episode on Grizzly Bears. The weather has turned fallish, I’ve stopped shaving my legs above the knees and am therefore feeling a bit bearish.

I listened with intent.

“Getting between a mother bear and her cubs is extremely dangerous and should be avoided at all costs.”

Now there, that’s my answer, why can’t I have a warning like that?

“Getting between a Heather Bear and her Samantha is extremely dangerous. The Heather Bear may morph at anytime and bite your head off.”

If I only had a caption, I wouldn’t have to worry if I forgot my filter…..

“what happened to your head?”

“I had a run-in with a Heather Bear.”

“Oh, ouch….well that’s a Heather Bear for you….they will bite your head right off….dangerous animals….adorable but dangerous (hahaha)

The Discovery program ended with the Mama Grizzly being shot with a rifle-looking tranquilizer gun and relocated with her cubs deeper in the woods. Apparently, she had become a bit too threatening.

Ouch.

I’m looking for a stronger filter.