Saturday, December 18, 2010

I should really be sewing…

but here are a few more shots I took today.

I thought the girls looked beautiful in the late afternoon sunlight in their ballet costumes they wore in Coppelia last May.. 


Best Buddies

Olivia Clare - trying to hide from me!



Here are a few shots from our time at Pokagon Park in Angola, Indiana, last weekend.  Debbie was very surprised for her 60th - and we all had a blast together!

Olivia, Me, Sophia (she really is behind me), Alix
Noah, Isabella (yes, she is there!), Luke
Cousin Brendon -waiting in line for his turn on the toboggan run.
Aunt Marianne is probably going to really love me for putting this picture on here.   Maybe she'll never know..   I can't help it - I love this shot of her - I didn't know she was so flexible!
Of course the hotel had a pool!
Cousin Brianna here from California with Joe - yay!!!!

Christmas preparations

Now, which one should we get?

This is it!

so pretty!

I wanted the front to look inviting for our Ladies' Christmas Tea on the 4th.
I put the flowers out about 40 minutes before the ladies and girls came.  It was a little chilly!  But they survived the 2 hours or so just fine and we are enjoying most of them still in the house.

I thought the girls would enjoy a fun surprise in the birdbath - these sweet carnations - on their way in for the Tea.
Alix and I even ironed napkins for the occasion!  A rarity for me.
I love the red wreath - probably surprising to most people who know how fond I am of white!
Teapots ready, spoons, sugar and cream, cups..
Glenn's gingerbread... Mansion..   We love it!

My pretty girls!  Ready for tea.

A few pics from Thanksgiving with Mom and Dad–better late than never!

6 little pilgrim girls, sitting in a row..
from the front..




Friday, December 17, 2010

How to pray for Sophia

After a couple of recent conversations about Sophia, I thought it would be helpful to let you know how you might pray for her. 

The surgery accomplished its purpose in relieving her airway of the external pressure from her aortic arch.  This has made a noticeable difference in how she breathes – she is quieter and can do more physically, than what she was able to do for several months. That may all sound a little clinical and un-exciting – but it’s an answer to prayers!  Your prayers!  We are so thankful!

So you could move her to your “Answered Prayers” or “Praise” lists!  

Essentially she is much as she was before the problems that led to the surgery.   She will continue to be compromised physically due to having one lung.  She is prone to respiratory infections, and her symptoms are more pronounced than when the other kids are sick.  She’s had pneumonia a couple of times – and it’s obvious why that would be difficult.  We do our best to minimize her exposure to germs.

But we can’t put her in a bubble.   She is a little girl – a strong, vibrant little girl.  As long as she isn’t fighting something, you would never know anything was different about her!

So in praying for Sophia, pray that God protects her from viruses, and that when she does get something, the meds and breathing treatments will be effective.  Pray that we are able to treat her here at home, instead of at a hospital.  Pray that God continues to strengthen and protect her, and give wisdom to us and her doctors as she grows.  Pray for the blessing of gratitude – that we are able to teach her how very much she has to be thankful for.

Not a whole lot different, in many ways, than what you are probably praying for your own little ones.  But with the added knowledge that she is different.  In a way that we can’t change, and in a way that does make her more vulnerable than some others. 

We are rejoicing in God’s mercy to Sophia – to His kindness and graciousness to her – and to us!  We are not worrying about tomorrow and what *might* happen - we are thankful to God for everything He is pleased to give us today.  Blessing upon blessing.  Beautiful, wonderful children!

Wednesday, December 15, 2010

catching up

I was afraid this would happen.  That I would not be faithful to keep a blog going.  But I suppose I did fulfill the primary purpose – to keep you all updated with Sophia during the time before and after her surgery. 

She is doing very well!  She has said less about her side hurting – and she looks and sounds wonderful.  A little heavy breathing here and there that might have a slight rasp in it – but then quickly subsides.  She hasn’t been sick and has just gotten stronger. During stretches last week at ballet, her teacher looked at me and commented on how strong her abdominals and back are – because she was able to hold herself so well in the “Superman” position on the floor.  (It’s just what it sounds like – laying on belly with back arched up and arms out straight in front – holding it for several counts)

We went tobogganing last weekend at Pokagon in Angola, Indiana with all the Orrs.  We had a wonderful time with them all as we celebrated Debbie’s 60th birthday.  (Glenn’s sister)  We laughed and talked and ate ice cream – we had so much fun.  The kids had a great time.  Noah was so worn out, either from the sledding and trudging about in heavy snow gear (or the excessive amounts of chocolate pudding he ate at dinner), that he put his head on the dinner table and fell asleep.  I think it was before 7:00 p.m.

Sophia and Isabella will be 7 on the 22nd!  So I am trying hard to get a couple of sewing gifts finished for them.  Backpacks and dress up dresses.  It may end up being more than I can accomplish in this amount of time.  But I thought it would be fun to have Alix help me, so she can get more experience.  The girls are very excited about their birthday, of course.  They have given us a lot of helpful suggestions about gifts for several months now.  I am pretty confident that no matter whether or not we actually fulfilled the specific requests, they are going to be happy.  They are so easy to please.

Well – better put my money where my mouth is.  Smile  Time to sew!


Here is a picture of the pattern I picked for the girls.  Olivia found it on my dresser and asked me to make the purple one on the bottom for her.

If we finish them, I’ll try to put up a picture of the girls wearing them.



Friday, November 19, 2010

Cruising along

Sophia is doing so well.  She continues to have some pain most days, but it must not be enough to bother her too much because she usually only tells me once or twice.  She hasn’t wanted pain medication when I offer her Tylenol, and after a few minutes, she is back on course with whatever it was she was doing.
She has been doing great with school and piano.  Her favorite piano song right now is “Jesus Lover of My Soul”.  I have been in other parts of the house, and heard her playing it over and over.  It’s music to my ears.

The pilgrim dresses have been a great source of fun.  The hats don’t usually last as long since they make heads itchy and warm.  But we have had many happy days of pilgrim girl play.

Thank you for continuing to pray for her.  She sounds so much better than she did before the surgery.  We can tell it’s easier for her to breathe.   If you could please remember to pray for her this winter, we would appreciate it.  She catches viruses easily and they almost always result in respiratory difficulties for her.  If you have any suggestions for boosting immune systems – send them my way!

We are thankful for each of you!
3 little pilgrim girls

Add caption

Alix in her colonial dress on her birthday - she made most of it!

Tuesday, November 9, 2010

brown sugar stitches

Sophia asked me today if it would hurt when her stitches “come undone”.  She was looking at me with a little frown and a slightly worried expression.

I told her to think about what brown sugar does when we put it on her warm oatmeal in the morning.
She said, “Oh…. you mean they’ll just melt away?”

And we were both able to smile about that. 

Thank you, God, for giving us happy thoughts to comfort little ones.  And thank you, God, for brown sugar, too.  It’s really the only reason I eat oatmeal.

Although it's not a bowl of oatmeal with brown sugar - there are still alot of happy thoughts in this picture!

Saturday, November 6, 2010


I took Sophia to see our pediatrician, Dr. Harper, yesterday.  He was very pleased with her progress.  Her wound is healing well, and she is only needing pain medication about once or twice a day.  She is moving her right arm around very well – unlike initially, when she kept it very tightly to her side.  He noticed she is breathing more quietly, too.  He said it is the first time he’s ever been in the office with her and not been able to hear her breathing. He encouraged me that it’s possible the tracheomalacia, the floppiness in her airway, will harden and firm up as she continues to grow.

I told him I didn’t think I would be returning to normal so quickly – and he agreed.  He said children are just more resilient and heal faster. 

We’re continuing to keep her home for at least a couple of more weeks to protect her from viruses, etc.  She misses her ballet class, but she is keeping busy here with the other kids. 

We’re working on her pilgrim dress for Thanksgiving, today.  I have slowly added to the costume over the years – first the apron, then the white, broad collar and cuffs (well, the cuffs were made of poster board which I cut out and then we stapled them together and slipped them over the girls’ wrists).  Last year, we did a few of the mothers’ pilgrim dresses. Now, it’s time to do dresses for the girls.  Sophia’s dress will be brown, Isabella’s blue, and Olivia’s red.  Alix and Kate have been working on theirs this week – we just need to finish them off.

Thank you for continuing to pray for Sophia!  She has been so happy reading the sweet notes and cards you’ve sent!  She has set them all on the counter in the kitchen so she can see them each day.  Don’t be surprised to find something from her in your own mailbox soon!
place cards for our Thanksgiving dinner at Grandma and Grandpa's house last year

 Pilgrim Mothers
Grandma, Aunt Colleen, Me, Aunt Jennifer
A random pilgrim children shot during our annual "play"

Tuesday, November 2, 2010

God is good

Sophia continues to look a little better each day.  She is eating a little more, and only needing Ibuprofin about 2-3 times a day.

Yesterday she sat down at the piano and started playing.  I sat next to her, and after a few minutes, we did her piano lesson.  She seemed glad to be doing something from our “normal” routine.  She loves to play the piano.  At the hospital, she told a nurse it was her favorite subject in school. 

She has been drawing pretty ladies and pretending to be a horse – a lame horse – for much of the past few days. 

I gave her a shower on Sunday and washed her hair.  Neither of which she was very happy about.  Afterwards, as I was getting some lotion for her, she raised her right arm and looked in the mirror.  The incision site is pretty yucky looking, so when she saw it, she started crying.  I reminded her that she has had similar looking wounds at the same place two times before, and God healed them quickly.  He will heal her again.  He has not stopped taking care of her. 

As far as her breathing goes, we can tell that she sounds quieter overall.  She doesn’t take as big a breath before she says something, and she is quieter when sleeping than she was before the surgery.  We’re hopeful that as she continues to gain strength, and her activity increases, she will notice a big difference in her ability to breathe easier. 

Thank you for continuing to pray for her!  We are very grateful for all of you.

Sunday, October 31, 2010


Sophia had a nice quiet night of sleep - her first all week.  She is able to go longer between pain med doses and is just enjoying spending time with her sisters. 

She did get sick this morning once, after a dose of oxycodone.  But if she takes it again, she will be eating something with it, now that we know for sure it upsets her stomach. She took a little nap afterwards.

After lunch, we all watched Chitty Chitty Bang Bang. Sophia and I had started the movie at the hospital on Saturday morning before she was discharged.

In fact, we were watching it when the hospital pediatrician came by to see her.  His name?    

Dr. Chitty.

I’m not kidding.  Smile 

Doesn’t God have a great sense of humor?

Saturday, October 30, 2010

Home again, home again, jiggity jig..


Sophia was released this morning.  She already looks better.  She is moving around more easily and ate a nice lunch.

Her pediatrician stopped by the hospital this morning to see her.  He’s probably the only the doctor in the past week that has caused her to genuinely smile.  He’s super.  We talked about his recent conversations with Dr. Manning and how dramatically different her post-op x-rays look.  They are the only x-rays she’s had which show part of her heart on the left side of her chest.  They are very hopeful that she is going to see a big difference in her ability to breathe. 

The pediatrician told me he was very proud of Sophia – of how brave and strong she has been.  He said he’ll never forget when he first met her and heard her history – that from a medical standpoint she is unique and fascinating.  But he was also amazed at her tenacity and strength.  He said he thinks of her as his “little engine that could”.  When he left, he said, “God is taking care of our Sophie.”

He certainly is!


!2010-10-25 15.31.04

Friday, October 29, 2010

A bump

We left Cincy last evening with Sophia, hoping that even though she hadn't drank much throughout the day, she would do better at home. But I just couldn't get her to drink hardly anything. She began to show some signs of dehydration in the later evening. So after talking with her pediatrician over the phone at 3:30 am for quite a while, we made the difficult decision to bring her for an evaluation.

She is on IV fluids and is beginning to improve. A visit from a few of her little cousins was excellent medicine. And of course she was happy to see Grandma and Grandpa, who came as soon as I called to tell them where we were.

Aunt Colleen is here with the new baby on the post-partum unit across the hall. She let Grandpa babysit him so she could come show Sophia a few pictures of him on her camera. Sophia was very happy about that.

An x-ray was ordered this morning due to some problems with her oxygen levels, but they came back clear, and the problems were resolved after she got up. Apparently her sleeping position was the culprit. Her neck was bent too far down.

She should be released in the morning, as long as she continues to drink and eat. She's already doing better about trying. A nap and some fluids have been very helpful.

We're waiting for her oatmeal to come - and here it is!

Thank you for praying. We are so thankful for it ! As Glenn said, God has heard them.
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And back again...

After bringing Sophia home last evening, Sophia would still not drink or eat.  Kelly called our pediatrician around 3:30 AM voicing her concerns about dehydration.  With his advise she took Sophia to Clarian North about 30 minutes away.  They put an IV in to hydrate her and administer meds.  Sophia has had a little Sprite and some dry cereal.  We need her to eat and drink and then she would be able to come home.

Please continue to pray for her healing and full recovery.

Thank you again for the prays you have already offered and have been answered gloriously!


Thursday, October 28, 2010

Sophia and Isabella

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While you're praying

Please remember to pray for our other kids at home. A couple of them are really missing me and Sophia. If only I could be in two places at once!

Also, pray that our loving friends who have been helping with things there, will be helped in their endeavors by sweet, obedient children. :)

We're very thankful for their willingness to be such help to our family.

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Sophia is finally seeming to turn a corner. Such a relief.

She really wasn't ready to go Wednesday. But last night she was moved to a step down unit, looking pretty forlorn, and she's been steadily improving since.

She had a better night- was able to get up twice to go potty, and got a little more rest. It took quite a bit of coaxing to get her up, but she was very brave. They have told us that the goal today is to get her up a few times and eating and drinking. Also, to try to decrease the oxycodone to Ibuprofin. Then she should be able to go home tomorrow.

She was pretty uncomfortable this morning with pain, but she was able to sit in a chair next to her bed, (with some persuasive encouragement) perched unhappily on it's edge for the first 10 minutes or so. Her nurse Emily gave her a dose of oxycodone, and she slowly relaxed as she sat there for about half an hour. I was able to distract her with the happy news of Aunt Colleen's new baby boy, born last night. We spent several minutes trying to think of boy's names with an "R" in them. George, Charles, Gordon...

Afterwards, she got back in bed and ate a few bites of chocolate pudding. Her first food since Sunday. Yay!

Now Glenn has arrived with her twin, Isabella. Sophia is telling her all about things here, and Isabella is soaking everything up with a sweet smile, interspersed with sympathetic murmurings. They are sitting side by side in the hospital bed, watching Milo and Otis.

Thank you for continuing to pray for her, it is a great encouragement to all of us. My first thought after the surgery Tuesday, when Dr. Manning said how well it went was, "That's because of all the people who are praying for her!".

Thanks be to God!

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Wednesday, October 27, 2010

Not quite ready

Sophia has had a rough day. The epidural site was pretty uncomfortable, until it was finally removed at 3:00. Her pain has increased under her arm where the incision is. Although they did remove all but one IV line, she is still not eating anything and has drank very little, about 3-4oz. Of liquid. She is on morphine and oxycodon. Her relief seems short-lived.

The doctors decided to keep her another night on the regular unit.
We agree she doesn't appear ready to go home.

Please pray that her pain would decrease and that she will eat and drink. She definitely wants to go home.

Thank you all!

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Sophia had a somewhat restful night, despite itching from the meds. She isn't happy about being here, but amazingly, I think they are going to dicharge her from the CICU today!

She needs to have her epidural removed, and her IV's taken out. She also has a Foley catheter to remove. So although there is much to do yet today, we are rejoicing.

She is beginning to complain more of pain in her side at the incision site. But they are giving her strong pain meds. She is having numbness in her right hand and her right eye is droopy, but the pain doctors feel this is due to the epidural and will resolve after it wears off.

I opened some sweet letters from loving friends and cousins today and showed them to her. She was so happy. She loved the drawings and bright flowers, the pretty swirly letters that spelled her name, and the sweet treats and encouraging words.

We are so very thankful to all of you who have been faithfully lifting her in prayer these past months. Thankful beyond words for our loving Father's kind care and protection of our little girl.

Please pray for her, a speedy and boring recovery. We will update again soon.

Much love to all of you!

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Tuesday, October 26, 2010

Praising God from whom all blessings flow..

I'm sitting here on a padded hospital chair, watching Sophia quietly sleep. God gave us many glorious blessings today.

The staff have been so kind. Just after Sophia was given a sedative to decrease her separation anxiety prior to surgery, the hospital had to call a hold on all surgeries due to tornado concerns. An hour later, the they were able to continue, but the sedative had to be readministered. But it was effective, and although Sophia clung somewhat to my hand, she let go quietly as they took her into the OR.

Dr. Manning told us afterwards that everything he did went better than he expected. He first looked into her
airway and could see the bend in it, where he could tell that it was being squashed. Next he began to enter her ribcage through one of her old incision sites, but the bones were fused together. So he went up one space higher and came in just above her implant. He saw that there was more space around it then had appeared on th CT scan image. So he replaced it with the larger implant. He had had concerns that the old one might be difficult to remove due to scar tissue, but he was pleased when it came easily out.

He then separated the thymus from her lung which created a window down to her heart. He pulled on the pericardium surrounding the aorta and was surprised to find it more stretchy than he thought. He was able to pull it all the way to the sternum. He also found that her lung tissue which had herniated over into the right side was firmly stuck together and moved smoothly in a mass back to the left side. He moved it out of the way, to the left, and stitched the pericardium to the sternum very tightly with three stitches. He told us that bone is sometimes very tough to get through, but he was to find he could get the needle through it easily. He got three "good bites" and was finished.

Sophia is in the CICU for the night and then will move to a normal room.

Thank you for your prayers! God heard them for we know that it was He who has worked all these things for Sophia's good. To Him be the glory!  We will update again tomorrow.
Sophia was taken to the OR at 1:30. We received a call that the doctor began at about 2:30. She was doing well right before, despite a delay due to severe weather.

Thank you for praying!

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Monday, October 25, 2010


We’re leaving for Cincinnati in just a few hours. 

Sophia is a little doubtful about going.  After they were tucked in bed last night, she asked me, “What are they going to do to me at the doctor’s office?”

I talked with her for a minute, and she seemed somewhat satisfied.  She did come downstairs a short while later and told Glenn she didn’t want to go.  But he was able to reassure her and she went to sleep quietly not long afterwards.

We’re very grateful for our dear friends who are helping the kids here at home this week – and so thankful for those we know are lifting Sophia up to the throne of grace. 

I have a few letters from sweet friends, and two little furry stuffed companions to surprise her with after the surgery, when she is feeling up to it.  Alix made a pretty little flannel blanket for Sophia to snuggle with at the hospital.  She wrapped it up and hid it in the suitcase.

I was reading the Psalms at bedtime.  The Bible is comforting, always encouraging, and I was struck with how appropriate Psalm 100 is at all times, including now.

1Make a joyful noise unto the LORD, all ye lands.
2Serve the LORD with gladness: come before His presence with singing.
3Know ye that the LORD He is God: it is He that hath made us, and not we ourselves; we are His people, and the sheep of His pasture.
4Enter into His gates with thanksgiving, and into His courts with praise: be thankful unto Him, and bless His name.
5For the LORD is good; His mercy is everlasting; and His truth endureth to all generations.

Dear Father,
We are so thankful for your gift of Sophia to us!  We love her – and we know You love her even more.  We know You have made her body in this special way, and You have given Your wisdom to men who can take care of her.  She is your people, and the sheep of your pasture.  We are thankful unto You and bless Your Name. You are good.  Your mercy is everlasting.  You have been so merciful to Sophia!  Your truth endures – and we believe it.     Amen.

Sunday, October 24, 2010

Scottish Ball

Friday night we had a wonderful time at the Scottish Ball!  We danced and laughed and danced some more!

It was the 3rd annual dance for our church.  Everyone looked fabulous.  Boys and men in ties and nice pants, girls and ladies in... well... it ran the gamut from sparkling sequined tops and skirts, to period dresses from the 18th and 19th centuries.  Many of the ladies and girls have become practical, so ballet shoes, (and I also noticed a pair of elegant black slippers), were more common this year.  The church has hired the same caller and her violinist and guitarist each time.  They are now familiar faces.  They are so talented!  I wish I could remember the names of some of the tunes - many which have girls' names, like Peggy or Sue, in the title.  I think one of them was called the Irish Washerwoman.  The caller, Mac, gave easy, simple instructions for the dancers, and everyone - including 3 or 4 year olds - was able figure them out pretty quickly, or at least be prodded along in the right direction.  We had a 20 minute break halfway through the ball.  We sipped apple cider dipped from pretty glass punch bowls, and there were two tables filled with delicious finger foods.
Sophia partnered with cousin Brooke for essentially the entire evening.  She and some of the other girls wore their white elbow length gloves, which turned out to be quite an effective germ protector.  Elegant, full coverage for the hands.

We were very glad we waited for the surgery so that she could go.  She was so happy.  Luke took over 800 pictures (he's a little reticent about the dancing part just yet), so we have plenty to choose from to remember the night for years to come.

IMG_0254  IMG_0372

Thursday, October 14, 2010

God's grace

This is from a recent C.H. Spurgeon devotion I read to the kids a few weeks ago.

 It seems good to me to put it here now as I contemplate Sophia's surgery, and as I pray also for dear friends amidst their trials.

"My grace is sufficient for you. "  2 Corinthians 12:9

If none of God's saints were poor and tried, we should not know half so well the consolations of divine grace.  When we find the wanderer who has nowhere to lay his head who still can say, "I will trust in the Lord,"  or when we see the bereaved widow overwhelmed in affliction and yet having faith in Christ - oh, what honor it reflects on the Gospel.

 God's grace is illustrated and magnified in the poverty and trials of believers.

 Saints bear up under every discouragement, believing that all things work together for their good, and that out of apparent evils a real blessing shall ultimately spring - that their God will either work a deliverance for them speedily or most assuredly support them in the trouble, as long as He is pleased to keep them in it.  This patience of the saints proves the power of divine grace.  There is a lighthouse out at sea:  It is a calm night - I cannot tell whether the edifice is firm.  The tempest must rage about it, and then I shall know whether it will stand.  So with the Spirit's work:  If it were not on many occasions surrounded with tempestuous waters, we would not know that it was true and strong; if the winds did not blow upon it, we would not know how firm and secure it was.  The masterworks of God are those men who stand in the midst of difficulties steadfast, unmovable -

      calm mid the bewildering cry,
          confident of victory.

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.

Wednesday, October 13, 2010

more coughing

Sophia was up a couple of times during the night last night - coughing.  I heard her on the monitor around 1:00 am and went up to give her a treatment and do some pitty-pats on her back and chest to help loosen the junk inside.  She slept for a few hours, then was up again with more coughing.  So we did more pitty-pats and another treatment.  She's been a trooper today, but obviously she's pretty tuckered out.

Please pray for her that she her symptoms would resolve soon.

Also- we received confirmation from the insurance company today regarding precertification for her surgery.  It stated:

date of service - 10-26-10
description of procedure  - aortic suspension
length of stay - 4 days
level of care - acute.

We're very thankful that we know with certainty that the Great Physician is keeping her safe even now - and has everything already covered regarding the surgery and her recovery.

Tuesday, October 12, 2010

hooray for antibiotics

I took Sophia to our pediatrician yesterday.  A terrific doctor - we've seen alot of him the last few years.  :)

He prescribed a z-pack - zithromycin.  So it's on for 5 days, off a couple, then on 5 more.  Should take us right up to before the surgery, but he said that is ok.  He told me to help her lay low for a few weeks - but that he thought she should go ahead and do ballet because it will help keep her muscles stretched and strong.

Sophia was coughing frequently for a spell during the middle of the night, but she was able to get rested and slept in a little this morning. Other than that and some sporadic coughing, plus the expected increased shortness of breath, she is good.

Thank you for praying!

Sunday, October 10, 2010

it is something...

Sophia woke up this morning with some pretty tight, stiff wheezing and coughing.  Her nose is starting to run clear liquid.  She's still eating, although not up to her usual snuff, but says she isn't very hungry.

We'll start her treatments every 4 hours - always the first step for her.  My knowledgeable friends recommended vitamins C and D-3 - so we'll see if that can help ward it off.

Thank goodness for the oximeter our friend gave us a few years ago.  It shows her oxygen saturation is slightly decreased for her, but still in normal range.  I didn't expect it to be greatly different at this point, but it helps to have as much info as possible about how she's coping internally.  Sometimes it's pretty hard to tell just by looking at her and listening to her.

Please pray for her, that God would protect her from a serious infection right now - that she wouldn't be compromised greatly by this, and that she will receive quick healing!

Thank you!

Saturday, October 9, 2010


We spent the day at Mom and Dad's today.  The second Saturday of each month, we all gather there for that month's birthday celebrations.  This month we had 2 - Isaac (9) and Jordan (6).   I think the kids probably all feel that Grandma and Grandpa's house is the next best thing to Heaven.  There is plenty of good food, always cake and ice cream, of course, and lots and lots of playing together.  Coming from a big family (1 boy and 5 girls) and then all of us having kids, some of us having LOTS of kids, is such a blessing.  We love to be with each other - spend our day at Mom and Dad's laughing, talking and eating.  What could be better?

 I got to hold Jennifer's littlest, Alissa (10 weeks) for a while - and it was even fun to change her diaper.  We all caravan-ed over to see Heather and Ron's progress on their new house.  We took turns pushing little swingers, watching the girls play dress up with Mom's ample dress up bin supply, the boys playing with swords, a majority of the big kids playing "capture the flag", built elaborate train tracks, talked about important things, read stories, told stories, and then the piece de resistance was watching Glenn and Mick and Dad take out a toilet and try to put a new one in.

 The kids were in the basement under the bathroom area.  They gathered several blue plastic chairs, and carefully placed them in an arch around the area where all the "excitement" was happening.  They had a front row seat to the whole (or the hole) show.  Glenn, Mick, and Dad took turns going to and from the basement to the bathroom where the exchange was happening.   I went down once to change a load of laundry and found about 6 or 7  kids sitting literally on the edge of their seats gazing fixedly up at the ceiling, where several large square sections of ceiling panels had been removed to provide easy access and visibility for the "plumbers".  There was alot of sawing, drilling, and general tearing away of pretty disgusting and malodorous parts.  It was great fun for all of us when Glenn lugged the old toilet out to the backyard and set it down in the grass.  Talk about convenience!

Since the back part of the new toilet was cracked, Dad and Mick and Glenn took off for a second trip to Lowe's.  Colleen and I decided to bring the littlest ones home at that point.  (it was 10:00 pm).  So she and I piled the youngest 7 into her van and she drove me and mine here.  We had such a wonderful time chatting on the way home.  I love my sisters .... and my brother!

Sophia has been doing pretty well.  She's been more wheezy-sounding lately - I'm not sure why.  I don't know if it's just more symptoms of the ongoing changes inside surrounding her breathing, or if she's coming down with something.  She complained of a sore throat last night, but it was better today.  She looks so pale to me.  But she continues to want to play and behave pretty much as she always has.  I just try to keep her from participating in any play that involves running.  She doesn't seem to mind.

She's supposed to have a sleep study on November 1, here in Indianapolis, but I think we're going to need to change the date.  We will talk to her pulmonologist to see what she thinks.  It will be so close to the surgery that I don't think we're going to have optimal conditions for studying her breathing patterns during sleep.

Speaking of sleep..... :)

Thank you for praying for Sophia.

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!

Tuesday, August 31, 2010

Monday, August 30, 2010

August 28

Dear Family and Friends,

We thank God for your faithful prayers on Sophia's behalf!  Knowing that you are all praying has been an indescribable source of comfort for us.

Wednesday's CT-scan went well.  Sophia did great.  Although we hadn't really talked with her about the last attempt, she realized that it was important to be still and quiet to get the pictures.  As we pulled up to the hospital, she said, "I'll try not to cry this time."  Bless her heart!  We reassured her that we knew it was hard, and that she was scared, but it would be better this time since she could be asleep.  We told her she was very brave - this time as well as the other!  
As we talked in the car afterwards, I told her proud of her we were. 

Glenn and I have seen the Lord working in her during these trips to Cincinnati - how He is helping her learn more about self-control, and trusting Him to take care of her when she is afraid.  We do rejoice in this - knowing that He is using everything she is experiencing to grow and mature her spiritually, to demonstrate His sufficiency in her life - to His own glory.  To draw her even closer to Himself.

We were very impressed with Dr. Manning.  He spent about an hour with us, showing us the CT-scan images and explaining them, and the indications very thoroughly.  He was kind and gentle with Sophia and talked directly to her, asking her questions about herself.  After much conversation and questions, we have a plan for helping Sophia that we feel is best for her.  

Essentially, her implant is doing a better job than what was at first suspected.  He has not decided yet that he will not replace it with something larger, but he needs to first check the scar tissue that is surrounding it and see how firmly it is holding it in.  He said sometimes it can be pretty "sticky" and cause more problems trying to remove it, than if he just left it for now.  He said that around her peak growing years (about 10-12 years old), there may be more of a need for replacing it - but he was pleased with how good of a job it is actually doing at this point. 

 The slit into her lung is indeed being pressed upon by the aorta - but not as drastically as when she was a baby, prior to the original placement of the implant.  Her heart is not in the normal space, but is instead shifted over next to the implant.  But - he said he was not surprised to see it there since the implant doesn't have the supportive pressure that her lung would have had to keep it on the other side.  He said that replacing the implant with a slightly larger one would help shift it back some, but the heart doesn't respond well to being maneuvered that way, so he wants to provoke it as little as possible.  Her left lung has herniated over into the right space fairly significantly, but again, he wasn't surprised by this and said it is to be expected to a large degree since it is working the load of 2 lungs and has that capability of movement based on the extra space between the implant and the area that her R lung would be taking up.  He told us that lung tissue is much more accepting to being "pushed around" and so he is more comfortable manipulating it, than her heart.

So - he is going to perform a surgery called an aortopexy - and possibly replace the implant at the same time.  Typically, in an aortopexy, the aorta is sutured to the sternum, to provide relief to the airway (or windpipe- as he called it).  So it is suspended above the trachea - attached to the sternum, which also pulls away the pulmonary artery at the same time.  Since so much of her left lung is blocking the sternum, due to the herniation, he feels it would more effort to the tissues  - too far away after he tried to avoid the lung tissue - to attach the aorta to the sternum.  Instead he wants to attach it somewhere closer, perhaps a rib, using the pericardium, the sac around the heart.  He has performed this procedure many times before (isn't that incredible?) - although it is more commonly attached to the sternum.  

Before he does the surgery, however, he wants all the operative information from our hospital from her pneumonectomy (which was done when she was only 6 days old) and from her original implant surgery (when she was 12 months).  He also wants to have an echocardiogram done.  He said it is possible that because the lung is oxygenating all of the blood for her whole body - a job usually performed by 2 lungs - blood pressure could build because of the force of moving so much blood through one lung.  Symptoms include shortness of breath - which of course, she has had.  While he doesn't assume this is an issue, he said it is best to check it before performing surgery.  If it is an issue, it can be managed with blood pressure medication - and he feels it is better to have that information at this point in her physical development, than to not check it and it become a dangerous issue for her later.  Currently, the echocardiogram is to be scheduled the same day as the FEES study she is to have on September 23.  After he has seen the results, the surgery will be scheduled.  Probably about 1-2 weeks following the echo.   Her hospital stay will probably be about 3-4 days, barring complications, and her pain management will be pretty good - she should be on Tylenol with codeine by the time we are home.  He expects she will self-monitor her activity level well on her own afterwards, and hopes that she would be resuming her "norm" by a few weeks.

Sophia sat quietly during the visit.  I ended up giving her my notepad and pencil when she whispered in my ear, "I'm ready to go home now" about halfway through our time with Dr. Manning.  He had been going back and forth from the different scan images as we talked- and we were able to see several pictures of Sophia's chest, her trachea and the aorta and pulmonary artery.  Some of the pictures were in 3-D and he was able to manipulate them, rotate them up to 360 degrees, on the computer.  It was amazing to look at those images - and see what is happening inside of her - in color pictures on a screen.  He was able to do one "layer" at a time - so just the trachea, then trachea plus aorta and pulmonary artery, etc.  

Sophia had been diligently and quietly drawing while we talked.  After some minutes, she stopped, smiled, and held the notepad out to us.  She had written "me" at the top of the page.  Underneath, she drew a picture of her trachea - just as it had looked on the screen.  One main bronchus, with rings of cartilage encircling it from the top down to the 3 little "branches" splayed out like fingers toward the left.  The Dr. was surprised - and smiled broadly.  She showed us other pages, copies of the ct-scan images we had looked at, of the different views, the one with the aorta pressing on the trachea, etc.  All titled simply, "me" at the top of the pages.  Then on the way home, she drew several more, including a cross-section that had the windpipe hole, her left lung, and what I'm guessing is the pulmonary artery.  She was pretty pleased with them.  

Typically, children draw animals, their mommies and daddies, etc., Sophia drew her airway, aorta, lung.  :)

We can't adequately express our gratitude with words.  God's obvious care of her - His wisdom and guidance regarding her doctors, the visible fruit of His Spirit at work in Sophia.  And your prayers for her.  It seems I really can't say it enough.  But, again.. thank you!  

We will certainly feel most relieved when the surgery has been successfully accomplished, but God's peace prevails.  

Hope you are all well- We send our love to each of you and your precious families.

Kelly for the Orr's

Fall 2009