Wednesday, January 2, 2013

Being an Excellent Patient

Today's gift is being an excellent patient.

In four weeks we are going to be taking my daughter to see a new doctor.  In preparation for our visit she has to have lab work done. When I opened the attachment with the paperwork for the lab work my stomach started to get knots.  It was a "work up" for sure!

The last time my daughter had extensive lab work done was when we were still playing the guessing game and trying to figure out what was really going on with her.   Six. Years. Ago.

Today was the day she had the lab work done, bright and early this morning as she had to fast. Anytime she has blood work done I always bring my dad, aka Poppy, as he is very calm in situations like these.  And it also helps he knows a little about finding a vein!   I also said lots of prayers she was going to do okay and we would get through this with flying colors.

She was a ROCKSTAR! Wow!

A year ago was the last time she had her blood drawn, with only one vial being collected.  No big deal...right?

Today...she had not 1, not 2, not 3, 4, 5, 6, 7, or 8....but NINE vials of blood taken!  She. Did. Not. Make. One. Peep. Or. Face!

I was beyond proud of how awesome she was this morning!  My other two children would still be screaming!  Trust me...I have had to get their blood drawn before and you would think they were removing a limb!

Her excellent patient skills did not stop at the lab today as she also had an appointment this afternoon with her orthopedist. We had an appointment scheduled to pick up her new AFO, but I wanted to also get an X-ray (six actually) done of her back as I (we) felt something was going on with her back and her last growth spurt.  And we were correct.

Another characteristic of Rett Syndrome has decided to rear its ugly head with our daughter.   Scoliosis.

Bad news, she has it.  Good news, it does not require bracing and we will watch it for six months and then have another set of X-rays.

Through the X-rays, her doctor visit and AFO fitting she was again a ROCKSTAR!  To say she put up with a lot is putting it lightly.  I would have been done after all the lab work!

Today she taught me that even when you are given bad news, you still have to keep your chin up and keep moving forward. To her, nothing changed today.  To us, we now know we not only have to continue doing what we have been, but better.   More.  Scoliosis is just one more hill we have to climb, but we will not let it limit one more thing from our daughter.

My daughter is an excellent patient...lab work, doctors offices, physical therapy....you name it...so I know she will be an excellent patient in dealing with this new characteristic of Rett Syndrome.

Here are two quotes for today...

Fear is nothing more than an obstacle that stands in the way of progress.  In overcoming our fears, we can move forward, stronger and wiser within ourselves- Author Unknown

True strength is keeping everything together when everyone expects you to fall apart - Author Unknown

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