The New Normal

Ok. So that normal was short-lived.  Glad I enjoyed it while it lasted.

I am trying the “don’t worry” thing.  I really am.  Truth be told.  I stink at it.  It’s true.  I try and try, but in the end – epic fail.

We finished the antibiotics Tuesday from the hospital/fever/headache thing 2 weeks ago.  She was on the mend, so I thought.

I know our schedule has been busy.  Too busy for her.  Too many things to do, every day leads to exhaustion.  My body struggles with exhaustion, but hers just can’t cope.

So this morning we went for the follow-up blood work.  The one to make sure the White Blood Cells and platelets came back to normal.  The we headed to Queens to visit my in-laws.  Two dogs, Meghan, Felix and I.

I the middle of a nice visit I noticed her resting her head on the arm of the chair.  Then, she asked for food.  She told me she wasn’t feeling too good so she must be hungry.  We fed her.  Then it all started to crash and burn.

She loves her baby cousin Connor.  But, she started backing away, not wanting to get too close to him.  Then, there was the red line across the eye.  Finally, “Daddy will you rub my head?”

And from there it all went downhill.  A cold cloth and Daddy’s magic fingers did little to relieve the pain.  In about 15 minutes time we were back on the Belt Parkway heading home.

My mind was racing.  She slept for a bit in the car, and I just kept trying to figure out a way that this could make sense.  Not even just to me, but to someone – anyone.

The last time we were in for headaches the pediatrician told me to get a neurologist consult.  Well I am working on it tonight.  God and the power of the internet have me linked up with some Cowden’s patents.  The goal is to find a pediatric neurologist who is competent and already has heard of Cowden’s.

That is of course if the immune system stuff is even Cowden’s related.  Then again at this point I am going under the theory that all this is related in some way.

Settled into bed with Advil and a 102 fever at 7pm. It promises to be a long night.  I will decide on a neurologist and have a few numbers ready to call during my lunch on Monday.  Priority.

We will see the ped at 3:30 Monday, and hopefully not  before.

Worry -it’s what’s for dinner.

Maybe I should stop looking for the old normal.  It happens so infrequently anyway.  Maybe it is all about the new normal.

3 thoughts on “The New Normal

  1. The New Normal. I blame Cowden’s for this but I know in support we are strong. I’ll pray for you both tonight. I’m always adjusting to my New Normal. With you there’s 2 I know!

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