It is so funny how things are evolving.
Once upon a short time ago, I would have MAJOR anxiety when I saw a runny nose or a low grade fever.
Now, I am managing it better.
Anxiety, yes.
When the kids got sick for the 1st time ever, it was disastrous.
He ended up in the hospital that night w/ an hour long seizure.
A 2 day stay.
Then another seizure 4 days later.
And a floppy baby.
Not able to feed himself.
Sit up, forget it.
No rolling over.
No pulling up to stand.
Having issues breastfeeding.
It was bad.
And mommy's instinct told me something was VERY wrong.
They insisted it was the flu's wrath.
I knew better.
He was jerking around when he tried to move.
(later found out it was ataxia)
It wasn't pretty.
And then I thought I figured it out.
B/c I was Dr. Googling it every moment I could.
He had brain damage & the result was cerebral palsy.
Todd thought I was crazy.
The doctor wouldn't listen to me.
Until I finally broke down & insisted he go to the ER.
He was admitted almost immediately upon arrival.
They could see it was neurological.
It needed immediate attention.
Then the waiting started.
What was it?
No one could figure it out.
Spinal tap
EEG
CT Scan
MRI
EKG
Bloodwork
Metabolic testing
It all happened.
It all came back completely normal.
He finally got diagnosed by exclusion meaning they couldn't find a damn thing wrong.
Then the IV steroids were started.
And he started to get better.
But it has been a long road.
A very long road.
Almost 2 years of therapy have gotten him close to "normal".
He is still lacking in speech but it noticeably every day.
His therapists are even impressed at the burst of growth & development.
He graduated from his AFO's & then his SMO's (both are foot/ankle/leg braces).
He is no longer in physical therapy.
Even bigger, he isn't being referred to the school district for continued services after the kids turn 3.
That's huge.
Ginormous.
Worthy of celebration.
But there is still the issue of future illnesses.
Ian's autoimmune system went haywire.
His body continues to react more to a virus than the girls.
I have a feeling it will always be like that.
And trust me, I have thanked my lucky stars on a daily basis.
We could be dealing w/ many more illnesses but the kids are relatively healthy.
Thank God.
That doesn't mean that a fever isn't still met w/ ferociousness in this house.
We beat it down.
If Ian's fever gets over 102, we are in the tub.
That's just the way it is.
I don't want to ever see my boy seize for an hour if I can help it.
I don't ever want to see him intubated WITHOUT sedation again.
This momma, along w/ Daddy, will do what we need to.
Which brings me full circle.
For the past 2 years, illness meant serious anxiety.
And while the anxiety still rears it's head when a fever shows up,
I can honestly say we are handling it so much better.
A perfect example was this past week.
Ian & Sofi both sprang up w/ a fever out of no where.
No symptoms, nothing.
Turns out there is a 24-36 hr high fever virus going around.
And they got it.
We handled it much better than in the past although we ended up in a cool bath on Sunday afteroon.
Ian & me.
Fun.
But it worked.
And we survived.
Sorry to be so serious.
Sometimes it helps to write it out.
To lighten the mood a bit, this is what we do on sick days.
Entertain the kids how ever we can!
This time it was bringing in their wagon & making it a comfy station.
They loved it.
1 comment:
Man, has it really been 2 years since all that? It made me tear up thinking about how worrying it was and how much I prayed for you and him. And now when I hear he's got a fever I say a prayer too, that it'll all be okay.
(((hugs)))
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