Deductive Argument as used by Grace (at age 3):  "I don't know why Sarah is crying- I didn't hit her that hard."

Part to Whole Reasoning as used by Sarah (at age 5) after discovering that I was the tooth fairy:  "Mom, Olivia Sholey lost a tooth today, MOM, did you hear me?  Olivia Sholey lost a tooth today, don't forget to go to her house tonight."

Argumentum ad baculum as used by Rebekah (at age 4 1/2):  While attempting to force her will upon her older brother she shook her tiny fists and threatened him with this misquoted movie line, "Oh yeah, do you want a piece of meat!"

Inductive Reasoning as used by Benjamin (at age 4):  At the funeral of a pet rabbit Benjamin noted, "If our rabbit dies on it's own we don't eat it, but if we kill it while it is still alive then we can eat it." *

Truism as stated by Jack (at age 3):  "If your tummy hurts...  you should go to the bathroom."

Repetition as a Rhetorical Strategy as used by Samuel (at age 2): "No  No  No."

*Our family may live in TN, but to date we have eaten neither roadkill nor family pets.


Check out Kid Witty Wednesday for more wisdom.

We have what we consider a "fair expectation" of what will happen.  I certainly had no expectations of children with metabolic disorders.  Nothing in our family tree lead us to expect or fear that.  

Jack's first crisis: we didn't know what was happening or what would happen.  I gave my gray, unresponsive son to God in the ambulance.  God gave him back to me, along with a miraculous measure of peace to carry me through the first hospital stay.  In hind sight that was the easy part of our journey.  

More than a year later we still don't have an actual name for his disorder which means we don't have a prognosis.  I'm reluctantly finding that I don't need to know what will happen with Jack's health.  Don't get me wrong, I want a prognosis,  I still desperately want a name for his disorder.  But I don't need one in order to cope.  

Jack's life is more than probabilities and God is bigger than any medical prognosis.  I'm going to do the best I can with the gift of every new day for each of my children.  Some days that will be easy, some days I'll need more miraculous help.

 At a Bible study last week faith was defined as, "action based upon belief, and sustained by confidence."   

Last March during an illness and under doctor's supervision we kept Jack out of the hospital only by feeding him liquid carbs with protein every hour for almost 4 days.  A diabetic would pass out by merely reading Jack's feeding log.  It was grueling and scary but worth it.   On top of managing Jack's illness I was teaching Samuel to drink from a cup, trying to prepare our business taxes and attempting to keep up with everyone's schooling.   

Because we do not have a Sub Zero we have space for...

 

Startling Mom is always exciting.

What I can imagine:

6:00 a.m.- Get up and dress, make coffee, have prayer time.

6:30 a.m.-  Greg gets up and we drink coffee together while having a meaningful conversation.

7:00 a.m.- I wake the children, they rise calling me "Blessed" and then dress & clean their rooms.

7:30 a.m.- Breakfast.

8:00 a.m.- I direct morning chores.

8:30 a.m.- I take care of business and personal emails and phone calls.

9:00 a.m.-  The children and I "start" the day refreshed and dressed and with a clean house.

An Amalgam of Recent Summer Realities:

2:00 a.m.- One of the "littles" gets out of bed, I settle them back down.

4:30 a.m.-  3 yo gets in bed with me and asks for milk before falling promptly asleep.  I lie awake wondering about his blood sugar.

5:15 a.m.-  2 yo gets in bed with me and falls asleep but not before waking 3 yo.

5:30 a.m.- 3 yo wakes Greg who gets up to visit the bathroom.  Greg wakes 2 yo.

5:45 a.m.- 2 yo starts talking loudly about juice.  I get up and start coffee and feed the two "littles" their first breakfast of the day.  They look cute at the counter.

6:00 a.m.-  I'm turning on my computer, opening curtains and breaking up baby tussles when 7 yo silently materializes on the sofa asking, "What's for breakfast"?  Startled, I spill my coffee.  I read to the three boys then check personal email.

6:15 a.m.-  Greg stumbles in with his coffee. 3 yo attacks Greg with another book request.  As I attempt to email my father I hear the front door open and close.  It dawns on my that the 2 yo has left the premises.  I fetch him.

6:30 a.m.-  Greg and I attempt a conversation.  7 yo interrupts with, "What's for breakfast'?  10 yo wanders in, trailing an afghan which knocks over 3 yo's lego structure.  Tears ensue.

6:45 a.m.- 10 yo sweetly takes 3 yo to "help her" feed the cat. 15 yo walks in while reading and trips on aforementioned legos.  Greg shows me a shortcut on my computer.  

7:00 a.m.- 7 yo asks, "What's for breakfast"?  10 seconds later 13 yo walks in while reading and asks, "What's for breakfast"?  15 yo begins playing Mozart's "Turkish March" at 3 times normal speed.  2 yo spills my coffee.

7:30 a.m.-  I drink more coffee.  17 yo is still asleep so with somewhat cruel glee I awaken him. 17 yo gets up and swings 7 yo old around in the air.  Greg flees to his office after sharing the last of the coffee.  I give 3 yo his meds. and check business emails while 15 yo starts pancakes.

8:30 a.m.- Breakfast dishes are now mixed with an art project 10 yo pulled out while my back was turned. 15 yo begins a Chopin piece purposely transposed into a weird key.  7 yo is flinging his body around the house "dying".  2 yo, for a reason not apparent to the rest of us, is taking all dining room chairs into the living room.  3 yo has poured out the box of lincoln logs in the den.  I answer the phone while logging onto Facebook, change a diaper, blow a nose not my own, and make more coffee.

9:00 a.m.-  I'm still in the yoga pants I slept in.

 

Ode to Argo, My Newest Love

For years that yellow cardboard box sat lonely and forgotten.

The crinkly wax paper disturbed only for

Right now I have a lot of joyless paperwork to do.  Taxes, insurance forms, school forms, dual enrollment forms for my 12th grader.  Speaking of dual enrollment forms, silly me logged onto my son's Mac not noticing it was in the Window's application.  Said application is not yet connected  with the home printer network.  Why on earth, when filling out an "online" application, should I need to print and sign and MAIL a hardcopy of my signature on a  $10 application fee?  Argghhh!  

Why are the details so amazingly hard for me to deal with? Paperwork makes me mean.   Paperwork is pushing me to the brink, that yawning chasm of joyless insanity is calling me.  I'm pretty sure insane people don't have to do paperwork.  

I took Luke's saxophone to Nashville to be repaired in an attempt to escape my paperwork.  In comparison driving in rush hour traffic was a welcome break.  Once there I had to parallel park for the first time in 12 years.  One try and Utter satisfaction.  A small sort of accomplishment.

In the music repair shop I waited while an elderly gentleman dressed in shabby janitorial clothing tried out his newly repaired sax.  His saxophone looked like it had been passed through the intestines of an elephant.  I've truly never seen such an ugly instrument.  I think it had moss growing on it.  And then... the sounds that came out of that squashed, dull, beat up sax were nothing short of pure and utter Joy.  A 60 second vacation.  Too bad sound doesn't photograph well on my camera phone.

Lilly the Kitten, who turned out to be Linus the Kitten, didn't come home Sunday night.  Rebekah was beside herself.  She searched, she cried, she worried.  She organized a grassroots organization of neighborhood kids to search along with her.  Believe me, there are a lot of neighborhood kids.  We watched Rebekah's heretofore undiscovered talent with community organizing.   28 hours after Linus disappeared 3 boys from down the street found and returned him.  There was great rejoicing along with fresh milk and treats for Linus.  Never has a kitten been so petted.

An hour or so later I went outside to talk with Linus and couldn't find him.  Rebekah had him locked in the garage.  She was afraid to let him go back outside.  Mind you, this is an outdoor cat and it's hot in the garage in Tennessee in August.  The conversation I had with her about "letting him go"  bordered on cliché.

My oldest son, Luke,  came home from his 3 1/2 week trip to Guatemala not an hour after Linus' return.  There was great rejoicing along with grilled steaks and fresh peach cobbler, but RATS; Luke doesn't like the garage either- he's already planning his next trip.  I guess clichés become clichés for a reason.

We know that Jack has a yet to be named genetic metabolic disorder that causes problems like low carnitine, hypoglycemia, low energy and slow growth, etc.  It is possibly in the FOD and/or Mitochondrial families, with possible celiac disease thrown in for flavor.  We know that Samuel has bouts of hypoglycemia of unknown origin.

Is Samuel's hypoglycemia rooted in the same disorder that affects Jack?

Samuel's doctor wants to admit Samuel to the hospital for a Fasting Test to (perhaps) answer this question.  They want to do blood draws at points during a fast to see what is going on with his body and blood chemistry. They also want to find out how long Samuel's body can safely fast to determine if he can go overnight without food.

No one can tell us how remote the chances are of finding out information that might change our current treatment for Samuel.  If, for instance, we find out that his ck levels or ammonia levels rise as his blood sugars drop that might be useful info.  Though I'm not sure how.  In a blood sugar crisis he'd be tested for those levels anyway.

Sam could be diagnosed with Ketotic Hypoglycemia based on the results of the Fasting Test.  I'd love that.  It's typically outgrown by age 8 or 9 and the treatment is simple, effective, and cheap- raw cornstarch at night before bed.

However, if Sam has what Jack has the labs will be chaotic and confusing.  The doctors will disagree with each other and no one will know exactly what is wrong with him. No one will have a prognosis.  We'll hear things like, "these are unusual results", or, "obviously something is wrong we just don't know what".   -And we'll continue giving Sam cornstarch at night.

There is a remote chance that Sam's test results + Jack's information could = some new clues for both of them.

The risks are assorted.  One very real risk is the chance of picking up a nasty bug at the hospital. Taking a well (at least not acute) toddler to the hospital goes against common sense.   Traumatizing our 20 month-old with the hospital itself, with multiple blood draws and I.V's and with the fact that we will have to NOT FEED HIM doesn't sound great either.

The fast could bring on hypoglycemia that they can't get control of quickly enough leading to complications. Some of the complications of hypoglycemia are brain damage, coma and death.  Personally, I do not think death should be listed as a "complication".

The chance of them not being able to get control of the hypoglycemia quickly enough are very, very, remote.  However, we are veterans of the hospital.  Weird things happen, additionally sometimes you have to deal with- politely put: dumb/arrogant/not-listening staff.

I wanted to have the Fasting Test done.  Anything that might have given me clues and a prognosis I was willing to jump through hoops for.  Anything that would have given me some assurance that when I put my baby to bed breathing, he'd get up still breathing.

Greg did not want to have the test done. Not at this point, not unless Sam evidenced more need.  He felt like it was picking at a scab or poking someone just to see what would happen.  He said that even if the labs showed everything was normal and that Sam could fast for 8 hours it wouldn't prove anything.  It wouldn't prove that Sam could fast that long if he was running a fever or asymptomatic but coming down with a virus.  After all, the two episodes of hypoglycemia Sam has had were totally out of the blue.  We would still be feeding him cornstarch at night no matter what the Fasting Test results were.

We cancelled the testing.  I still wanted to have the tests done until I was halfway through writing this post.  Looking at it in black in white was helpful.  I think Greg has something with his "poking someone" illustration.   In every other way Sam, unlike Jack,  is the picture of health.

I think Greg is correct and at this point, the dangers of the test outweigh the impossible-to-weigh possible benefits.  I think I adore cornstarch and will continue to adore it for some time.  I also know that since Sam couldn't make this decision we had to make it for him.  We made it with the information we currently have and a certain amount of gut feeling.  I also know that Greg and I have to be a team- we have to trust each other.

There is no manuel for raising children, well or sick.  I'm a black-and-white gal adrift in a sea of grey.  A sea of- just wait, and trust...  Feeling slightly sea sick:)

After a week or so into listening to the 1812 overture, I was putting Jack down for his nap and he asked to listen to the "Monster" music.  I couldn't figure out what he meant until he showed me the CD box.  "Monster" music, Tchaikovsky's 1812 Overture, whatever.  I set it up for him.   I thought that he was perhaps imagining Napoleon's troops as monsters.

A few days later, big brother Luke walked through Jack's room during nap time and came out laughing.  Jack had asked Luke to turn on the "Monster" music.  When Luke didn't know what that was, Jack explained very slowly, "You know, Wachowski's music, the music that Mike Wachowski wrote about the bad guys attacking the city".  Who knew animated characters were that, well, 3- dimensional?

Later, I lay down next to Jack and asked him to explain what was going on in the music.  Did you know that at the end of the overture what you may have mistook for cannon fire is actually the sound of the good guys chasing the bad guys away from the front door with whips?