Kidlets and Coffee

Another day in the life…

Stable…or not

Stable…or not.

Facebook memories has informed me that I’ve been able to use the term “stable” in recent years regarding the kidlets.

“Stable” means no changes.

“Stable” means maybe not better, but not worse.

“Stable” means no new symptoms.

Unfortunately, “stable” doesn’t apply now. I miss when it did.

It’s odd, as a Special Needs parent, you get used to the challenges. You get used to certain things, like if X is going on, then we will see Y and Z and can deal with those. It’s like writing code.

IF constipation

THEN behavior outbursts

ELSE emotional stability

IF fatigue

THEN getting hurt more

ELSE physical stability

But now we have Q, R, and S, with maybe some Greek letters thrown in for fun, because why not?

IF no peripheral vision

THEN … wait, what’s up with her peripheral vision?

ELSE wait, it’s suddenly working now?

Now we get to hear, “well, this system looks fine.”
OK, so why doesn’t it work properly?
“Uh…..fatigue can cause that.”
“What causes the fatigue?”

The frustration is real.

For years, we have fought for answers. For years, we have heard, “well, we want to check this first.” Usually followed by “it wasn’t this, so we don’t know. Everything should work.” But it doesn’t.

There’s a phrase used often in the medical field.

If you hear hoofbeats, think horses not zebras.

Occam’s Razor

Basically, the simplest answer is usually the correct one.

We’ve spent 6 years ruling out the simple, obvious answers.

6 years asking, maybe can we look at the less common causes of these symptoms?

It is time to start looking for the zebras.

Looking over medical records from the past 6 years, I’ve started to notice quite a few instances where things were noted but not followed up on. Phrases like “unknown significance” were mentioned here and there.

How many times do changes or abnormalities of “unknown significance” have to appear before they are looked into? Too many.

We continue to fight. We continue to research and push and question everyone and everything. We ask, “What about….?” And “What if…?” And “Maybe we should try…”

I understand that my child is just one of many that doctors see. I understand that what I see from her at the end of the day is not always going to match what they see first thing in the morning during a 15 minute time frame.

I take pictures and videos. I send them to doctors through messaging so that later I can say, “Look at this! Why is this happening? How can we fix this? If it can’t be fixed, how do we make her life easier?”

Pain should not be a child’s default. I am 38 years old and wake up in pain every day, but I have lived a full life. I have been a competitive gymnast, a Soldier, and a really accident-prone human. My kidlets have been born. That is what has led to their pain, and it is not fair and not right.

We will continue to fight for answers. We will continue to fight for these kidlets. Because they deserve it.

LU at her recent upper GI study

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