Tuesday, September 21, 2010

A few more days..

We had a great trip to Pentwater, Michigan a couple of weeks ago.  A very good friend has a family home right on the beach in beautiful Pentwater.  We went with them, Colleen and Mick and their kids, and all of ours for a week.  The couples each had a room, Luke and Noah had a room, and the 12 girls (14 down to 4 years) all slept in the finished basement.  (Other than a few times when one or another of our youngest three made their way up to our bedroom and squeezed in with me.)  The basement essentially looked like a tornado hit it most of the time, even though Rachel (Colleen's oldest - 14yo) tried vainly to straighten things out a few times.  No matter how many times we put underwear and shirts, dresses, etc back in the suitcases, they kept throwing themselves back out again in defiance.  Sigh.  :)  Oh well - there were so many other, more important things to do.

  Although it was cool and windy much of the time, there was still plenty of time on the beach.  Here are some of the pictures Glenn took to commemorate our time at the Beachaus.


Just a reminder - Colleen is the one expecting, not me! :)

So now after a week back at home, back at school, but not back at church yet due to the chicken pox scare, we are preparing for Thursday's tests in Cincinnati for Sophia.

As a reminder, she is having the FEES (fiberoptic endoscopic evaluation of swallowing) test to check for aspiration.  I'm trusting God to help her through this - I'm fairly apprehensive about how calm she will be.  A spray will be used to numb her nose, then a tiny tube inserted.  Once it is in place, she will be asked to eat various foods and drinks.  The hospital website has a nice little coloring page for kids about to undergo this test.  I am going to print it off and then have Sophia and whoever else wants to, color it as she and I read it.  I think it is a good way to help prepare her - I'm just not quite sure how much of a difference it will make when we are actually there.  But I'm hopeful it will help.  A video swallow study is supposed to follow this test, to see if she is refluxing.

Then at 11:00, she will have the echocardiogram.  This test is to check for possible high blood pressure issues in her heart.  It is more precise and informative than using a blood pressure cuff on her arm.  When Glenn asked Dr. Manning (the cardiovascular surgeon) why the echo, he replied that since it isn't possible to put a cuff around the heart to measure the blood pressure, the echo is performed.  :)  Very descriptive.

Sophia is the same.  I was worried she might be starting some type of respiratory infection - her breathing became noisier on Saturday morning.  But so far, no other symptoms have appeared.  I try not to look at the very pronounced sucking in centered between her collar bones, when she is breathing a little hard.  A tell tale sign of her body's efforts.

The girls were very happy to start ballet again last week.  They had the summer off and really missed it.  The twins are in a new class, with new girls.  They stuck pretty close together the first night, but they seemed more comfortable the next time.  The teacher is aware of what is going on with Sophia.  Thankfully, most of the class is stretches, and movements at the barre.  Not too strenuous at this point.

Olivia is in a new class, too.  :)  She's so fun to watch!  Kate and Alix are each with the same group of girls they were with for the recital last year - so they're happy.  And even more thrilling....drum roll..... Kate and Alix will start the Beginner Pointe class this year.  We are taking an exciting excursion to Kinney Dance this Saturday with Ms. Hume (the ballet teacher) and she will help all the girls choose the right toe shoe for their toes.  Sloping or square.  :)

The boys spent some time in the yard yesterday with a large empty cardboard box and the air rifles.  Thankfully, they came in with all limbs intact, and the "target" flat on its side in the yard.

The other night at bedtime, I happened to put my hand on Sophia's stomach as she was laying in bed.  She had just jumped into it, so her heart was pounding hard enough that I could feel it beating.  I realized the main force of the beating was near the middle of her abdomen.  When I moved my hand up to her left chest, the beating became very faint.  I remember the CT-scan showed it had moved over next to her breast implant in the lower right quadrant, but it was still surprising to me to feel it beating there.

Sophia told me that night she wished she were me.  I asked why.

"So I would  have two lungs and I wouldn't be sick," she said.

I reminded her that she is able to get off her bed, whenever she wants, and walk - or jump, or run, or dance, or do ballet.  She isn't stuck in her bed with cords and wires and tubing that are hooked up to machines.  She has strong arms and legs - they work!  She can hear, see, smell, etc.  She has a mind that is sharp and quick - she can read!  She can talk and tell us what she is thinking and how she is feeling.
She will get better.  The doctors are able to do something for her to help her.
All of these abilities are blessings - and not all children have them.

 It seemed to help her.  :)

It helped me.

It reminded me of a woman I met while Sophia was in the hospital - during the time when she was having the breast implant put in.  I went to the patient laundry room at the end of the hall in the hospital wing to switch a load of laundry, and met a woman starting her own.  She told me that her little 14 month old girl was in the hospital, again, for more treatments.  She had leukemia.  The mother didn't know if the little girl would live much longer.  I don't know what happened with the little girl, but I've thought of them and prayed for them at times over the years since.

Countless parents have faced medical issues with their children.  And although our life has certainly been more challenging with a medically fragile child, there are many parents who are dealt more. Children suffer - and have complicated issues that need to be addressed.  Parents face trials with their little ones - and many don't have the blessings we've been given - loving and supportive family and friends.  Friends who bring us dinner after we've been on trips to Cincinnati. Friends and family who have spent countless hours with our children while we were at the hospital.  Who have cooked and even cleaned for us.  But especially the blessing of faith.  The blessing of hope.  The blessing of gratitude. Knowing that our God is Sovereign and that everything He hands to us is for our good and His glory.

All these are gift from a God who never turns His back on us!  Who will never leave us or forsake us.

Spurgeon said, "The one who would glorify his God must be prepared to meet with many trials.  No one can be illustrious before the Lord unless his conflicts are many.  If, then, yours is a much-tried path, rejoice in it, because you will be better able to display the all sufficient grace of God.  As for His failing you, never dream of it- hate the thought.  The God who has been sufficient until now should be trusted to the end."

Mom told me recently, "We're thankful people!"    :)

Yes, we are!

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