But wait, there’s more!

but-wait-logo

 

Sorry if I got you too excited with the title.  It’s really nothing too thrilling.  It’s just – there’s more.  There is always more.

I held the phone all day in hopes I would get the promised call from the rheumatologist today.  Really I should know better.  At this point I just want to know if I can raise this child’s medication.  But, we will add that to the list of conversations for tomorrow.

Tomorrow – happening in just a few minutes.  My how time does fly.  And my fellow insomniacs, all with minds and hearts as full as mine will appreciate the fact that we laughed today.  We actually had a case of the giggles.

It started when I called about the car.  The poor, fairly new car at the “Car Doctor” continues to get worse news as the days go on.

CarDoctor

 

Today’s report was that they are “at a standstill.”

WHAT?  A work stoppage on my 7 month old car??  REALLY?

But they have to wait for authorization before they can ORDER any more parts.

AND, they are waiting for a “Field Mechanic” to come take a look.

How this happens to a car that 7 days ago the entire shop was swearing to me was just fine is amazing,

At least they are on the same page as I am now.

Meghan and I HATE the rental.  It smells, It shakes.  It’s dusty.

But we laughed at the fact that the mechanics can’t seem to fix the car any better than the doctors can fix her.

Funny what can make us laugh.

We know each other really well Meghan and I.  We are very “in tune” so to speak.  I guess it’s a product of being together so often in so many precarious situations.

So as we walked up to swim practice again tonight she complained of pain in her neck.  That was weird.

I touched it – checking for lymph nodes.  Nothing obvious.

She swam the first 50 yards and looked weak.  The coach motioned for me to come to the deck.

She told me Meghan said her throat was scratchy and dry and she was having trouble breathing.

Meghan told me she was GOING TO finish practice and she was FINE because she LIKES practice.

I stepped back from that level of determination.  The coach agreed to let her swim if I was close by and we both watched.

She swam until 6:05 after taking 1st place in her 50 free heat during the mock race at practice (and knocking off about 8 seconds from her time a few months ago) the coach told her to go.

Only ten minutes left in practice anyway, reluctantly she agreed.

speeding train

 

And I can swear to you as we walked up the steps to exit the pool that is where the speeding train plowed right through her.

That was it.  She was talking and then all of a sudden she was telling me she was swallowing nails.  She was pale.

It happens that fast.  This isn’t so much the Cowden’s but the weak immune system.  The IgG subclass deficiencies, the missing mannose binding lectin.  From winning her heat, to flat on her butt.  That fast.

So we drove home and she showered.  We talked about the pros and cons of urgi care at dinner.  We had the conversation more for something to talk about.  We all knew she had to go.

hello-again

 

So we even have a “regular” doctor at the urgi care, who knows enough history not to badger us with silly questions.  He dove right in for the strep test.  He dug into her throat and patiently watched for that second line to appear.  And finally – close to the 5 minute time frame, he walked over and said to me “here it is.”  Faint as anything, but it was there.

“Smart Mom, by tomorrow she would have been a mess.”

I know.  I know,  It’s that fast and that hard.  If I wait –  it gets ugly.

strep

 

That’s the scoop on Strep Throat – from a family that has seen a lot of it.   We thought we were rid of it when the tonsils left.

We forgot that Cowden’s patients can regrow their tonsils.  So the tonsil tags forming again in the back of her throat are little disease mongers.

The first dose of antibiotic went in around 10.  The second one will be tomorrow morning.

Tomorrow she was supposed to be at Bible School.  Tomorrow she will accompany me in the rental to Manhattan again for my follow-up with the breast surgeon.

I hope its quick.

She has PT at 1, and the orthopedist at 2:30.

No rest for the weary.  Have to check on that hand.

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Moving at our OWN pace

Two weeks ago today we left for the last day of school.  Seems like an eternity, although not a restful one.

Today was the first day I woke up with nowhere to be, and nothing to do.  Our first mandatory stop is swim practice at 5:30 PM.  So I sit, nursing a cup of green tea, and trying to convince myself, on my health quest, that it is just as good as the caffeinated hot cocoa I have been drinking for years.

snooze-and-lose

This morning I woke when my body told me it was time – somewhere around 8:15.  What a blessing to open your eyes because you are ready.

I tended to the garden.  I watered my tomatoes, peppers, eggplant, cucumbers, and I even picked a ripe zucchini.  I watered the flowers on my deck and I marveled at the calm beauty of the neighborhood at 8:15 on a Wednesday morning.

Not my plant - but you get the idea!
Not my plant – but you get the idea!

Now, to all you teacher critics out there- I recognize ten weeks of unscheduled time is a gift.  I understand its not “the norm,” and I AM grateful.  But to all you who are realists, I try not to be much of a complainer, but this schedule we are keeping is far from a walk in the park.

Even as I reflect just on yesterday, and then the last week, I can easily find myself overwhelmed.

schedule

The rhuematologist confirmed that the Celebrex is necessary.  On the up side she said, at least the liver seems to be handling it well.  Yep, on the up side I need to worry about my almost 10 year-old’s liver?  So we have about a 50/50 split, and that’s just the doctors we like – touting the pros and cons of Celebrex.  Take her off.  Leave her on.

celebrex100mg

I love them all, but ultimately the pain decides for us.  This child is accustomed to pain so deep that the 20 laps of butterfly she swam Monday – when I expected her to be barely able to lift her arms Tuesday – caused her to need only “an extra stretch.” But the pain in her wrist right now – that can knock her to her knees.  Celebrex it is.

So I read articles from the oncologist last week about “angiogenesis” http://childrenshospital.org/newsroom/Site1339/mainpageS1339P356.html

I try to absorb medical jargon about why the Celebrex helps the pain – but doesn’t cure it.  And why it may even help prevent the Arteriovenous Malformations (AVM) from flourishing.

I read an article she gave me on “prophylactic thyroidectomy” and its benefits in Cowden’s Syndrome patients.

I read about “Long Chain Fatty Acid deficiency” and heard about the possible need for a muscle biopsy to assess carnitine levels.

worried mom - FBI

I am an educated woman, but I sometimes wonder why I seem to spend more time in medical journals than educational ones.  Did I miss my calling somewhere along the line?  Probably not, but “necessity is the mother of invention.”

And yesterday as she was examined by the rheumatologist there came the confirmation that the right wrist is “thicker” than the left.  A month and 3 days after what we thought was the “injury” to the wrist, it isn’t better.  Not really at all.  So she said, definitely get an MRI.

We are on it.  11AM Saturday.  We already cancelled the birthday party we were going to.

She wants a copy of the report – ASAP.  She expects they will find something.  I went to make my six month appointment, and she told me to hold off until after the test results.

I look at the piles on my desk.  Better since the shredding is over.  I glance at the order confirmation for my new driver’s license, and can’t help but wonder where the old one ended up.  I look at a beautiful collage Meghan sent to the printer last night as I was working – just to make me smile.  I look at the books for the “Teacher Effectiveness Training” I will be attending tomorrow, and the flyer with the itinerary for the Disney trip.  Its right alongside the Costco list, and the original copy of the Myriad genetics report that I don’t have BRCA 1 or2.  Obviously I still have a little more work to do down here.

Monday I went for my MRI.  The one that checks my spleen.  Next Tuesday I have the appointment to find out if I can keep it.  Already covered the endocrine surgeon, the gyn oncologist,  the I just need the breast surgeon and the plastic surgeon, and my oncologist to have their visits.  It’s easy to forget that I am even part of this Cowden’s Syndrome mess.

Lessons Learned from my daughter
Lessons Learned from my daughter

My focus is on the beautiful one with the curly hair, who gives the best hugs in the world.  It will be a long week – again.  So for today, I will try to slow it down.  The sun is shining.  It’s July.  And we don’t have to go to work OR the doctor today!