The sun is out!

The sun is out after a couple rainy days meaning my puny three-inch plants are now blossoming into leafy little monsters.

My garden is starting to look like a small Jurassic park.

But have no idea what I planted.

This happens every year. I get a tad overzealous in my planting and forget what I actually bought until it starts bearing some sort of fruit or veggie.

Oh wow, I did plant a cucumber there. Oh hey, there’s a pepper.

It’s kind of like Christmas…..but maybe a little disturbing because I’m the one who bought planted everything…

And I still can’t remember.

And sometimes, the fact that the plant will even produce something, still isn’t a sure thing that I know what it is. Last year I was insistent that I planted a pumpkin. My sister-in-law commented on the lovely fruit growing in my garden.

“Heather, your watermelon looks fabulous!” She said.

“Oh no, that’s not a watermelon, it’s a pumpkin.”

“But it’s green, and round and has light green strips on it.”

“Oh no, it’s a pumpkin. I think it’s a special pumpkin that turns orange when it gets colder.”

I waited all summer for that silly pumpkin to turn orange.

September came about and my sister-in-law insisted I pick it and slice it open. This pumpkin/watermelon debate was driving her crazy.

The inside was a lovely shade of red and it tasted remarkably like a watermelon.

Son of a gun…..all this time I grew a watermelon….and it never did turn orange.

Today I gave my adolescent plants a little pep-talk, telling them they could grow up to be anything they wanted. Seeing that I can’t remember what they should be, I feel like I’m giving them a little independence.

Who knows what we’ll grow.

Somewhere in between hospital stays, therapy, dirty laundry, seizures, meds, tube feedings, and oxygen…..

You have to live your life.

You have to celebrate the big things

Like Amy and Shawn tying the knot.

You have to gather the village….

Even if members of the village are having some issues.

Small issues, like an upset tummy

Or much bigger issues like TWO broken legs….

Or big issues like a herniated disk…

Which means you have to watch the ceremony like this….

Or like this….Our village seems to be a little worse for the wear and is now accepting applications for a Medicine Man/Woman, any takers?

Because even if you’re not on your ‘A’ game, how can you not celebrate when approached by the Father of the Bride?

Who just happens to be wearing his dancing shoes

Oh Yeah….

And you hang out with people like this….

and of course Hubby Bubby

The rest of the Fam

My lovely ‘sister’…

And kindred spirit

Along the way you look out at this beautiful place and this beautiful time and even if your back isn’t quite right or you have not one but two broken legs or if you tummy is bloated and angry…..it doesn’t seem to matter as much.

This seems to matter a little more. Because it’s much nicer if we don’t have to do it on our own.

Samantha’s PICC line was taken out today. Her PICC (otherwise known as a Peripherally Inserted Central Catheter) has been in her arm for seven weeks. Usually PICs are accessed for about 30 days so seven weeks was getting a little long.

Perhaps it was time….

I have bittersweet feelings about the PICC. It’s a direct line into her superior vena cava….if it gets infected it could turn into a blood infection and the line has to be flushed every night to keep things flowing correctly. You can’t get the site wet so a proper bath hasn’t happened….for seven weeks.

Stinky.

On the other hand, we have accessed it many, many times this Spring. It’s been so nice not to have to place an IV when she’s sick, to be able to hook her up to IV meds when she’s seizing and to run blood tests when her lipase is through the roof.

To PICC or not to PICC?

Samantha isn’t sick. She doesn’t need it (currently) so our fabulous Dr. E made the call…..Pull the PICC.

After knocking on a couple wood cabinets and an assurance that she is healthy, I too decided it was time to pull it.

Samantha seems to be happy with her arm back. She’s looking good isn’t she?

Here’s pre-pull and the entry to the line.

Post pull with only a band-aid!

I love it when we get to remove tubes and lines. Another little baby step on the road to recovery.

knock, knock, knock on wood 🙂

When you spend two months back and forth from the hospital, things tend to slip.

The other day a sales clerk asked me if I was aware that my driver’s license had expired….

“Expired?” I said, “No way.”

“Way.”

It expired on my birthday….

Which was in January….

I thanked her because no I had no idea. I never get carded anymore. I rarely write checks. I don’t fly anywhere anymore. No reason to look at my drivers license, which just happened to be 6 months expired.

So today I packed up Samantha and we went down to the DMV. After about 20 minutes, number 64 was called and I went up to the desk to be assisted by ‘Jerry’.

“Still at this address?” He asks

“Yep”

“Height is 5’10”, weight correct?”

I haven’t really weighed what my driver’s license says weigh for a while. I decided to finally come clean, “eh, add ten pounds to that.”

“Oh that’s a pity,” he said.

Really? That’s a pity?

“Blue eyes, brown hair?” he continued.

“Hmmm, you should probably change the hair to gray.”

“Well it’s your choice.”

I wasn’t sure if Jerry was commenting that was my choice to be gray or to put said color on my license. Nevertheless, I thanked Jerry for his hair and weight consultation, smiled for my picture and walked away, legal once again.

Next time I’m going in saying that I’m 120 and blond, just to see what I can get away with.

P.S. If you have a chance, read the comments left on my Mr. Toad post. KD left a great poem on the subject and the other comments are quite lovely. Jenny, Max can come up and catch toads anytime 🙂

Summertime brings toads to our garden. They hang out by the tomatoes, under the tulips and are just well, toads.

They also get stuck in the window wells.

And they can’t get out.

And I feel bad. It’s a poor fate for a toad, to be stuck in a window well in 90+ degree weather. So a couple times a week, I gather my little garden shovel and Samantha’s sand bucket, climb down into the window well, and rescue my toady friends.

Today I rescued three little guys from the window well. Upon climbing out with bucket and shovel in hand, I found a newly-rescued, Mr. Toad sitting in the grass giving me the stink eye.

He didn’t look very happy with my valiant rescue attempts. I fact, he looked a little pissed. Before I started throwing a little Well what’s your problem Mr. Toad???? attitude, it hit me……

Maybe he has worked his whole life to live in the window well. Perhaps in Toadville a cozy little hole in the well is considered prime property, no snakes, no birds….perhaps I had just robbed Mr. Toad of his life long ambitions with a single swoop into the Dora the Explorer sand bucket.

Who do I think I am, to nonchalantly relocate my neighbor into the big, exposed, backyard without even asking?

I felt kind of bad. I apologized to Mr. Toad but he continued just to stare. Then I thought maybe it’s just Mr. Toad’s nature to be kind of grumpy.

So I watered the geraniums.

Yeah, slow day at the Schichtel household.

Along the way you meet some really good people doing some really good things…….

This is my friend Tami

Almost two years ago, Tami lost her baby son Landon to a mitochondrial disease called Leigh’s disease. Tami decided to organize a walk in memory of Landon and to raise awareness about mitochondrial diseases. The walk is called Landon’s Hope.

Saturday marked the second year we have walked for Landon. Tami has raised over $10,000 for the United Mitochondrial Foundation from her two walks. Sadly, this year we also walked in memory of Landon’s friend Maire who also had Leigh’s disease and passed away in August.

You would think this event would be sad but it’s really not. It’s hopeful and empowering. It’s fabulous to see these moms doing so well and doing something to raise awareness. It’s especially nice when you walk with a friend……

And talk about our kids, mito complications, medicine, life and perhaps another mito walk in the fall?

Today we also had our family support group picnic. Samantha met a new friend Calvin, who also has a mitochondrial condition.

Calvin was quite taken with Samantha, sat by her side and kept wanting to hold her hand. Samantha’s not great at reaching up to grab things but with a little help, Samantha and Calvin held hands for a little while.

I love these kids. And I love what they teach me.

It has been quite a 24 hours……

We have been struggling with seizure control for the last ten days. Samantha would have a cluster of seizures, we would give her rescue meds, she would sleep for a day or two and then the seizures would come back.

This is no fun for anyone.

So yesterday when the seizures started up again, our neuro and I decided we would take her to the Emergency Room, give her a hefty dose of Dilantin, stop the seizures and go home on a new seizure protocol.

That was the plan.

It was a good plan and it involved us only being at Children’s in the afternoon while we did the I.V. med.

But Samantha’s seizures had a different idea and by 8:00 last night it was clear we wouldn’t be going home. When the seizures continued after two doses of Dilantin, two of Ativan and an EEG, it was clear we would spending the night in the PICU.

So, we hunkered down for the night and I prepared myself for another weekend at Children’s.

BUT, today the seizure activity has calmed down, her heart rate and oxygen levels have remained stable and our trusting neurologist has decided that the best place for Samantha to be is home.

So, we are going home! We have never been discharged directly from the ICU but I am not arguing. We are packing up, tip-toeing out of here and keeping our fingers crossed for a quiet, non-eventful weekend.

Hope you have the same 🙂

Today is my day to post for Hopeful Parents. You can read it here or check me out there!

“How is Samantha?”

I never answer with ‘she is good’ or ‘she is sick’, I always preface my response with ‘today she is good’, ‘we’re having a rough time of it today’.

Because our life changes like the direction of the wind, what is comfortable one day is painful the next. A protocol that works like a charm one week just might not work once we hit Monday.

We have no control.

This variable lifestyle has made me a tad nutty.

And a bit superstitious.

I knock on wood. Seriously, if something is going well for Samantha I will say, “Well we have seizure control today, knock on wood.”

If wood is not available to me from where I am, I will stop the conversation, I will get up, find a door, or a cabinet, any piece of wood and knock on it. If I can’t get to wood, because I’m holding Samantha or caring for her, I will tell the person I’m conversing with to knock on wood.

And I’m serious….knock on wood.

When Samantha was in PICU, a friend dropped off her son’s lucky blanket that he had in the PICU. Another friend brought in a stuffed monster, because her son has monsters for good luck. We have crosses, angels, messages, stuffed animals, prayers, amulets, charms and lots of wood knocking.

We live in a world that tries to control so much. We know the weather five days in advance. We flip a switch and we have light, heat, cool air, water….

But when it comes to our children and their illnesses, we really don’t have a whole lot of control. Their little bodies are calling the shots.

So, like our ancestors, who didn’t have 24/7 radar weather, who looked to the horizon and asked I wonder what today will hold? Will it be calm? Will there be a storm? Will my crops survive? Perhaps we need a rain dance. We too approach each day looking to the horizon, wondering if we need to prepare for the next storm. Wondering what amount of knocking on wood, lucky blankets and monsters will help our precious little Peanuts make it through another day or at least make us feel better, feel as though we have some tiny element of control.

And yes, I have made up own anti-seizure dance, while of course, tapping on some poor piece of maple.

What is your superstitious ‘thing’? What do you do for an element of control?

This is our new addition to the household….

I find it quite Williams Sonomaish, don’t you?

This is Samantha’s home pulse oximeter. The top line is her oxygen saturation (100% is great!) the bottom line is her heart rate. 128 is a little high but not too bad. Overall, I am happy with these stats.

This machine is a little chirpy but after a while, I hardly notice it.

Samantha has had a tough two days. We’ve had seizures that have been a bear to control. After talking to Children’s Neurology and tossing some really good anti-epileptic drugs at her, it is really, really reassuring to hook her up to the pulse-ox and know that her heart rate is stable, she can maintain her oxygen levels and she is not completely snowed by these meds.

This information can keep us out of the emergency room and helps the doctors we talk to make better decisions about the next course of action. This all makes our new little friend a very lovely, very dependable, little friend.

Speaking of the emergency room, our little friends have also had a tough week. Monster Max , Cici and Jacob will be visiting Children’s tomorrow for various reasons. In the words of Max’s Daddy……

“You ladies need to find a new place to party!”

Agreed. We are hoping to miss this party but will have our dear friends in mind. Please send them all a little prayer or good thought…..heck, chicken feathers are good too 🙂

To an uneventful night for all……