Today

today

In the spirit of one day at a time… today she feels well.

Today homework is already done.

Today her stress level is low.

Today she swims in the water like the fish she longs to be.

Today as I sit poolside with my computer, I can watch her laugh and smile with her teammates.

Today the less rigorous of the two practices, her CYO team comes first – but she is sure she can manage a double practice.

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Of course about 7 days ago we raised the Celebrex back to its (in my opinion) too high dose.

No one can figure out why the drug works for her, but it does.  And I am grateful, but scared all at the same time.  The list of medicine grows.  The knowledge of Cowden’s Syndrome remains spotty at best.

We know of the cancer risks, but the chronic pain, the low endurance, the vascular issues, the migraines….

One of our doctors theorizes that the Celebrex has kept her AVM in her knee from acting up.  Given the potential side effects of Celebrex I think it’s the medical equivalent of robbing Peter to pay Paul.

Sometimes I feel like with all the doctors we see, there is still no one minding the store.  We travel between specialists, between symptoms, between surgery and recovery.

The blood for the thyroid won’t be drawn for a month.  She slept 14 hours Friday night and another 12 Saturday night.  No major plans for us for a while.

The throat clearing never stopped with the thyroid removal, and I am flat our unsure who to even ask.

Sometimes I like to play mind games, and forget about Cowden’s all together.  I daydream a bit…

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And then I remind myself that every illness, every experience, every event that occurs in our lives helps to define us and make us who we are supposed to be.  Like that ‘ever changing puzzle” my Dad used to tell me about.

And I think of my friends and family.  They are contending with diagnoses new and old.  None of them fun.  I would never say to them that experience shapes who we are.  That is a personal belief that the wrong person just might deck me for.

Especially on my heart is my internet friend from Australia.  Never have I felt so helpless as her daughter endures multiple brain surgeries and I am 12 hours and several continents away.

You Never Know How Strong You Are Until Being Strong Is The Only Choice You Have

Today.  Today my girl feels good.

Today I will do as I have been taught and let tomorrow worry about itself.

Today we are BEATINGCOWDENS!

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May All of this Princess’s Wishes Come True

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As I rest my head tonight I hear the slow restful breathing of my husband and my beautiful 10 year old.  Today we swam. Today we had her hair done at the boutique. Today we wore fancy dresses. Today we laughed and hugged and lived. Today was not about challenges that lie imminent. Today was about laughing. Today was about magic. Today was about Meghan. So when the woman waved her “pixie dust” I will confess to fighting back tears. “Bippidi Boppidi Boo! May all of this princess’s wishes come true!”  Something so silly – yet with ridiculous deep meaning to us. Love my princess!

Every Day is a Great Adventure!

My walking team (minus1)

Ever feel like you lived a few days all at once?  Yep.  Today would be one of those days.  From the physical to the emotional – I am shot.  And it is only the BEGINNING of the week!

We walked today, my mom, my friend and I.  When Mom picked me up this morning we were both a little grumpy.  then we both cried a little.  It just seemed wrong heading out without Meghan.  But I took some solace in the fact that when I kissed her at 6:30 AM her skin was blessedly cool to the touch.  Maybe it was over.

So we picked up our  friend, and determined to enjoy the sunshine, we were in central Park a few minutes after 7.  Professionals by now, we do all of our shopping, and gathering of “free stuff,”  then we walk it to the car so we can race pretty much unencumbered.  And Meghan, for having not been there, made out quite well in a wide array of paid items and “free stuff.”  Well deserved!

The starting line…

Manhattan was crowded as ever, but thanks to my aggressive little Mom we were up close to the front when the race began.  We moved aside to allow for the runners and then had a really enjoyable walk without the tight crowds we sometimes experience.  We got to chat and walk, and enjoy each other and the sunshine.

Holding the banners Meghan made for us

At the finish line. Aren’t we pretty in pink?  🙂

So after a fun and exhausting morning we headed home.  Meghan was so thrilled that we hadn’t forgotten about her.  I was less than thrilled to see her on the couch, a clear indicator that the fever returned.

So, just like that came the transformation from walker to Mom.  We started making plans for who would watch her Monday.  She reminded us about her friend, and ours, a neighbor who loves her like she is her own.  Meghan said, “Just ask Patty!”  So I did.  Patty will be here at 7:15.
Thinking it was all taken care of, we sent Meghan for a nap.  Restless a few minutes later, the thermometer revealed a scary 104.2.  Knowing what he would say, I had to call the pediatrician anyway.  That number is too high for me. So, he happened to be in his office and invited us to come in.  (I adore my pediatrician.)

He spent a few minutes sizing her up.  The Tylenol was starting to work and she was down to 103.7.  After an agonizing 20 minutes he sent us for blood work at a local ER.  I am not a big fan of the local hospitals, but thought perhaps a brief visit MIGHT be ok.  Not so much.

In the literally blood spattered walls of a tiny room with no access to TV or cell phone, we sat while they took 2 blood cultures and a CBC.  She admitted at 4 PM with a fever of 102.9.  They gave her a dose of Motrin.   We waited for the blood for almost 2 hours.  As I grew anxious they told me they were having trouble finding it.  Almost ready to leave, it turned up – with a terribly low white blood cell count, but nothing else noteworthy.  We left quickly, being discharged at 6:30 with 99.4, having learned/remembered 2 things.

1. It is not OK – even for a short visit, and

2. Motrin – Motrin – Motrin

We had a hard time deciding who got to shower first as we cleaned off the filth we had just been in.  Dinner, some TV, WINE(for me – not her!), and it was off to bed.  Fever free at 8:30.

Headed up now for the 11PM Clindamycin.  Who knows what tomorrow will bring? Every day is a great adventure!