Wednesday, September 29, 2010


Sometimes it feels like I'm sowing, and sowing, and then sowing some more.  And the reaping is so far on the horizon, there's just a cheeky little glimpse of it.

Then yesterday, Kate played one of her piano lesson songs.  And at the end of it, when she looked at me to see how she'd done, I could only give her a huge smile and a thumbs up.  I felt too choked up to tell her how beautiful it was.  How I was thinking of the hours we have spent together doing lessons these last few years, and of her diligence to practice on her own.

And I see God producing fruit from our efforts, many of them - in surprising ways.

 And I am so thankful.

Thankful for these children He's given me, and thankful for the work He does in them.  And in me,  through this really hard job of being a mom, and everything that is heaped into it.

Later, when I could say the words easier, I told her what I had been thinking.  And we had a really squeedgy hug.

Monday, September 27, 2010

Surgery date

Dear Family and Friends,

Sophia's surgery is scheduled for Tuesday, October 26.

The nurse told me today that Dr. Manning said there was no rush.  Such a relief to hear those words after the anxiety and urgency that we felt in July after her first bronchoscopy.  Well, actually after the anxiety we have felt most of the summer.  In retrospect, we can see how at other times in her life, the doctors changed their opinions regarding timing, or other details, surrounding issues she's had.  More information often seems to result in changes.  And those changes have been for Sophia's good, and God's glory.  We've seen God take merciful and tender care of Sophia.  How He has given His wisdom and skill to the wonderful doctors and nurses, the respiratory therapists and pulmonologists who have treated her. And His timing has always been perfect.  

The nurse told me that after the surgery, Sophia will need to have very limited interaction with people outside the family for about a month.  If she were to contract a respiratory infection, or some other illness, it would be very painful and detrimental to her health.  So, although it felt a bit selfish, we decided to wait to do the surgery until after our church's Scottish Ball, which is on the 22nd.  We know she is excited about the Ball, (well, of course the whole family is!) and we want her to be able to go.

We will be in Cincy on the 25th for her precertification for the surgery.  Then, after the surgery, she should be at the hospital for about 3 days.  The surgeon, Dr. Manning, sent us an email explaining the details of the surgery.  Here is what he told us:

In most cases when we do an aortopexy, we suture the pericardium that is near the junction of the aorta and its first main branch (the innominate artery) to the sternum.  In Sophia’s case, because things have shifted so much, I doubt we could bring the aorta all the way to the sternum, but using a longer flap of pericardium, or even some of the capsule that has formed around the implant, we want to move it toward the sternum or even the ribs just to the right of the sternum.  If we could move the aorta about an inch, I think we would make a pretty big impact, even though that doesn’t seem like such a massive move.  It’s a little hard to predict how long the operation would take because she’s been operated on before, and you never know exactly how much scarring you will run into.  This would just slow things down a bit.  I expect that things will take in the 2-3 hour range.  It would be done under general anesthesia, of course, which would include intubation during the operation, but we would expect her to be extubated in the operating room at the end of the procedure.  No special diet.  All I care is that she get as many calories in a good, balanced diet in order to promote rapid healing.  We will plan on going back through the same skin incision.  I am ordering a replacement implant (same style, just a bit bigger) to have available if we decide to replace the current one.  I definitely want to leave one in, but we will have to see when we are in there whether we can just leave the current one, or swap to a new one.

He sent us a picture - one of her ct-scan images - to help explain it, but I'm not sure I can figure out how to get that on here.  If only I knew someone who knew a bit about computers.....


I'll see if I can do something about that tomorrow.

Thank you all for praying for our little treasure.


Friday, September 24, 2010

Echo results

A nurse just called to say that the echo looks good.  No abnormalities were detected.  Hurrah!!
Praise God!

The nurse said she will call us back early next week to give us a surgery date.

She did it!

Sophia was so brave yesterday!  I was very proud of her.

She quietly and obediently let the nurse spray 2 squirts of nasal spray in each nostril, sniffing after the sprays, as told.  Then, we went into another room where she sat on my  lap, with a large towel over her front to keep food from spilling onto her clothes and my arms around her to help keep her hands down.  The doctor introduced himself to her and showed her the scope that would go into her nose.  It was long and thin, with a small light on the tip.  He demonstrated that it could move back and forth slightly - which made it look kind of like a live thing, to me.  I wondered if he shouldn't have shown her, but it didn't seem to make a difference to her. A video screen was mounted high on the wall in front of us, which showed the scope's progress inside.

Initially I could tell she was watching the tv screen as he inserted it - through the little tiny hairs in her nose and farther back.  But when he got to her vocal chords, she looked away.  The speech pathologist had mixed chocolate pudding with a green dye and came over and gave Sophia about 6 bites of it, one at a time, as the doctor watched it go down on the screen.  It was interesting, albeit a little repulsive, to watch the tissues moving the food past.  Then came little pieces of a saltine cracker, followed by sips of grape juice.  The speech pathologist fed Sophia, and Sophia took everything perfectly, without any protest, all with that little black probe in her nose.  I was completely amazed.  When he finished, the doctor slowly pulled it out and we went back to the first room.  He came a few minutes later to say that everything looked great.  She is not aspirating!

We ended up having to wait over an hour for the echo, but that went well, too.  She lay quietly on a bed, in a darkened room, with various distractions provided.  There was a moving fish scene projected onto the ceiling. On the floor by the back wall was one of those tall, thin water tubes with an inner tube which had bubbles and plastic fish blowing up through it, while stringed lights hanging on mirrors on either side of the tube changed colors and the fish went up and down through the bubbles.  The main distraction (or maybe better called the main attraction) was the tv with Dora playing.  It worked well for our video-deprived child.
She lay on the bed in a paper gown, with the front open and 3 small "stickers" on her chest, which were connected to wires hooked up to the ultrasound machine.  It was fascinating to see her heart pumping - I kept looking back and forth at the illustration on the wall of a heart, trying to figure out what I was seeing in the ultrasound.  Because her heart is on the opposite side of her chest, the tech had to ask a more experienced nurse to come take the final 15 minutes of images.  She wanted  to get the best shots possible for the cardiologist, and wasn't sure how to get a good angle with the heart in that position.  Throughout the whole hour, Sophia lay with her eyes glued on Dora and Boots, other than shifting whenever the tech asked her to change positions.

I wasn't able to talk with a nurse today about the images, to see if they've been reviewed.  I was told Dr. Manning was out today at a conference.

Hopefully, we will soon have a surgery date and be able to move forward.  We expect it to be in the next couple of weeks, according to what Dr. Manning told us.

We are so thankful for your prayers!  I have never seen Sophia do so well on procedures like these.  She was so compliant. I could feel the tenseness of her body during the FEES study, but she had tremendous self-control.  It was a blessing for everyone.  The doctor was very happy and told her how glad he was that she didn't kick or bite him.  :)  Poor guy.

Thank you for praying - please continue!  We will update you as soon as possible.


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!