The more you know

For this blog entry I am bringing out and dusting off a piece I did almost a year ago on FB– before the blog and before the Captain Jacktastic page.  It’s a kind of crash course in what our day-to-day life is all about.  Because I wanted to dispel the myth that I sit on a chaise lounge all day reading People magazine, eating bon bons and sipping French 75s.  😉

Did YOU know……

I don’t sleep  with my husband?  Well.  SOMETIMES I do.  The night-time routine is as follows: The boy gets his medicine in the chair with Clay.  They snuggle and when it comes time for bed, Jack will say “PV OFF”.  Then it is my turn to take  him back to bed and get him to sleep.  Sleep for Jack requires a completely dark room and a sleep machine .  Getting him to sleep can take anywhere between 20 minutes to 2 hours. On a good night, I am able to rise from bed and go out to the living room and spend time with Clay.  AND get into bed with him and snuggle, etc.  Maybe even fall asleep. However,  sooner or later I make my way back to Jacks bed — for several reasons. One being if he wakes in the middle of the night he is almost impossible to get back to sleep unless there is immediate intervention. Two — early morning waking  is prime  seizure time.

Did YOU know……

Clay and I don’t really get to “date”?  We don’t have  those spur of the moments….”oh hey, honey, let’s go catch that new flick– So and So can come watch the kids for us!” Nope.  Once a week, the planets align and we get three hours of respite (5pm to 8 pm)  where we can go have dinner or cocktails, etc.  We hold this 3 hour time slot in high esteem.  It is necessary for us as a couple to have this, and we DO NO take it for granted.

Did YOU know……

Clay and I totally support each other going out for “girls” night or in his case “club meetings”?  We trade-off.  It’s only fair.AND only smart, too.  We need breaks.  This keeps us sane and our marriage functioning. Neither of us begrudge each other these respites.  And we encourage them.

Did YOU know……

Holding down a job can be hard?  Sure.  MOST jobs give you a set number of sick days- but a good flu or a bout of bronchitis can use them up.   Therefor Clay and I have to be über vigilant about our own health.  When your child is on immnio suppressants AND has seizures AND requires trips to Oakland Children’s Hospital  ….those days can get eaten up rather quickly.  SOME bosses have been understanding.  Others? Not.  So.  much. .  (“can’t you just put him on seizure meds?” Oh gee! *slaps forehead* why didn’t *I* think of that?!)

and speaking of seizures…….

Did YOU know…..

We are ever hyper vigilant?   Was that just zoning out or was that a stare? Did that smile look a little crooked to you? Did he just look down or was that a nod?  Even when Jack has been seizure free for months, there is always that nagging in the back of your mind.  There is always that worry of “we’ve gone so long (too long?!) without a seizure- are we DUE?”  So even when you think  you are  seizure  free you are not.  You live with the “what if ” fear every day.  Even good days.

Did YOU know……

As a family we must function as a well oiled machine?  and we ALL rise to the occasion.  That includes Darrah who is wise and compassionate beyond her 12 years.  She is her brothers greatest champion and I could not be more of proud of her if I tried.

Did YOU know…..

WE have to be on top of making sure medications are refilled in a timely manner (can’t use auto refill on “controlled substances”) ?Snacks must be low calorie, gluten free, etc etc etc……Grocery shopping is an adventure and we pray to the Chip gods for good sales at the co-op.  We plan, we plot, and make sure to NEVER run out of anything.

And lastly ,
DID YOU KNOW…….

I wouldn’t trade it for the world?

Times can be rough, tough and frightening, but never in my life have I been more AWARE-

Of small and large blessings.

Of what’s truly important.

Of what the true meaning of love is.

Of what real compassion is on a daily basis.

And I would not have it any other way.

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The best laid plans………

Let me tell you about traveling with Jack.

HE LOVES IT!
Jack could sit in the car and ride for hours and hours and never get bored or complain or want to stop…….He is delighted by the “spinnings” on the cars. (wheels) He see squares everywhere. (fences and bridges). When the wipers come on it brings a paroxysms of unadulterated joy.

Now. Let me tell you about traveling with Jack.
It requires an immense amount of planning and list making.  Meals made ahead of time.  Baby monitors, sleep machines, toys, dvds, medication. Special blanket and airplane pillow.
Scoping out the hotel room to look for dangers.

And so it was with this in mind we proceeded to Oakland Children’s Hospital for our appointments– oh! and please bear in mind, that OCH is a good six hours away and requires all sorts of planning for my dear husband and I to get away ourselves.  AND making that all work with the doctors and clinics we need to see once we get there

Did I mention the word logistics?

Rightio, then.
We planned to leave right after work on Wednesday.
Clay had the car loaded and ready to roll.

All systems go, 3, 2, 1………
AND WE’RE OFF!

True to form, Jack had a blast.
I was able to get some handwork done, and Clay was ever the stalwart driver.
We made good time and arrived at the hotel knowing we had an early rise to get to OCH in the morning to be sedated for the MRI.

Except…..
That’s NOT what happened.
Upon arrival at the hotel, Jack became grumpy.
Once in the room, he climbed up on the bed and asked for blanket and pillow.
While changing his pants and clothes we realized:
FEVER.
Not just warm, but HOT.  Baked potato hot.  Had it been a cartoon, you would have seen the waves of heat coming off him.

Not good.  Not good at all.
This was a game changer.  You can’t go in to be sedated for an MRI if you have a fever.
Fevers like this can trigger seizures (even in “regular” kids).
No time to think about anything, but get the fever down.
Strip him down. Acetaminophen. Cool rags.

Soon, he was comfortable enough to sleep.  I crawled in bed next to him.
He snuggled in, grabbed one of my braids, sighed, and fell to sleep.

HE slept well.  ME? Not so much. Clay? Not really at all.

Waking brought a round of phone calls, rescheduling and trying to get another game plan going.
They scheduled us for the next morning, providing he could go 24 hours without a fever.
Jack seemed to be on the upswing…..but….who can say for sure……OK.  we’ll try that.
The next day Jack was moving slow, but in good spirits.  Only slightly warm.  We ventured out for a drive.
By early afternoon we were back to fever (not as high, acetaminophen doing the trick)
and the next days appointment cancelled as well.

So the bright side?
Lots of lounging on a big bed with fluffy pillows.
Naps.
Showers with unlimited hot water.
AND no household chores pressing in on us making us feel like we needed to get SOMETHING done.

SO back to the drawing board.
We are looking at trying to plan the next round of appointments around ANOTHER set of appointments that needs to be done in April.
Good Lord willin’ and  the creek don’t rise, we can get it ALL scheduled for our spring break.

Here’s hoping!

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