Mercy Me!

Qavah had her checkup this morning to investigate what looked like a growth in her right ear canal.  The doctor looked in, and started to laugh.  He said it looked like she had stuck something in her ear but that it looked pink and fleshy.  After further investigation he described what he said was a Silly Putty substance but retracted that when he tried to pull it out.  It turned out to be a much softer, waxy, substance.  Lo and behold he eventually pulled out a pea-sized clump of Strawberry Shortcake Lip Gloss.  We started laughing, and I have laughed each time I remembered the look on Qavah's face when it came out of her ear.  

Just because a little person has a complicated disease, and multiple physical anomalies, doesn't mean she is not a little girl prone to do childish things.  Even little Nehemiah, when he heard about this, asked his Mama, "Who sticked it in her ear, Mommy?"  It's a good thing we didn't put her to sleep to do a biopsy, as was first suggested.  Mercy!

Donor

Qavah's doctor will be holding a conference call with us next week to discuss the advantages of using  a different donor for Qavah.  He has found a living donor willing to begin the process of a bone marrow harvest for Qavah.  If the living donor match is better than the original cord blood match, the donor will then have their marrow extracted from their hip bone.  He or she will have to be put to sleep for the procedure, and will likely have a sore hip for a day or two.  As I think about the fact that a stranger in this world has been contacted and is willing to do this for Qavah, my heart just fills with awe.  We continue to pray for the doctors, donor, and Qavah, as we wait for the Lord to unveil His perfect plan.

Kathryn is weary, but is feeling optimistic about her surgery next week.  She is ready.  Pain has been a motivator, and she is daily thinking about the joy of being on her feet again.  

Grace arrives on Sunday.   Assuming she is going to feel comfortable taking over some of my tasks, Paul suggested that we take some time to go out together.  He suggested climbing Sharp Top.  The view is spectacular from the top of that mountain, but neither of us have climbed like that for over five years.  I'm hoping our knees are as strong as they once were, or Grace may be taking care of us too.

Kid's Meals

There are smudges and little fingerprints on the lower half of the windows.  I'm keeping them there for a day or two to remind me of how fast children grow and how sweet little fingers are. The grandchildren have been here. While they were here, we had teddy bear pancakes for breakfast.  For lunch we had melted cheese sandwiches. For dinner we had chicken nuggets, cheese, and orange slices.  The day after they left, I asked my husband what he would like me to make for dinner and he simply said, "adult food."  I guess he wasn't impressed with pancakes staring up at him with little blueberry eyeballs.  So I fixed meat, potatoes, gravy, and asparagus.  Tonight, he's out after dark working on a third wheelchair ramp to make the house wheelchair friendly for Kathryn.  He's a happy man.

Kathryn has written about her upcoming hip surgery on her website at www.kathrynskeepsakes.com.  Below is a picture of the grandchildren's pancake breakfast:

Home From Pittsburgh

This will be a short update.  Paul and I just got in from Pittsburgh and it is late.  We are both looking like a couple of zombies tonight.  The first thing I had to do when we got in was fill a syringe and give Qavah an injection of Neupogen to bring her white cell counts up.  She is dangerously low and the parting words from the hematologist was a command to give it to her when we walked in the door.  Once her white counts come up she will be better able to fight infection.  She was diagnosed with a very bad sinus infection, and I have a prescription to be filled and started in the morning.

Basically, Qavah needs to be in better health before we admit her for this transplant.  Also, we were told today that the cord blood donation that the doctor intended to use was tested for HIV using an earlier test version rather than the current approved test.  So rather than having that cord blood ordered and ready, it must be tested again for HIV.  It passed the previous test, but both Paul and I feel that the delay may be the best thing for Qavah.  We will be absolutely certain that the cord blood is pure, and she will have time to kick this infection.  At this point we are no longer looking at admitting her April 23rd as previously planned.

We were so happy to walk through our back door tonight and see Kathryn's beautiful smile.  She has been well cared for, and even Gideon was a happy puppy, having been walked by friends and health care workers the past few days.  We are so grateful to God for His provision.  My dear friend of many years sat with Kathryn this week in the office of the doctor who was testing Kathryn for metal allergies.  I was so happy for Kathryn, that she had my trusted friend with whom she could process the information from the office visit.  We don't have any firm plans right at this moment; none besides flopping into our own beds, and falling into a deep healing sleep.  There is no place like home.

Thank you, Lord, for keeping us in the shadow and safety of your wing.  And thank you for the rest we will have tonight.  Amen

Spring 2012

This was a beautiful week in the Roanoke Valley.  Our senses were delighted with the sights, sounds, and smells of springtime as we strolled around on our property last Sunday afternoon.  Is it that my heart senses God so near; walking with us as we approach the reality of Qavah's bone marrow transplant?  Is it that I feel His pleasure in making these beautiful spring days for us, so that we can take Kathryn out in her wheelchair to experience His creation?  Whatever the reason my heart feels this way, I hope that I have thanked Him enough.  There just aren't enough words to express how I feel about the wonderful things I have experienced this spring.  But I have the assurance that He sees my heart, and I know that when words fail, the heart speaks. For as it is written in 1 Samuel 16:7b, "Man looks on the outward appearance, but the LORD looks on the heart".

After wandering around taking pictures of blossoms last Sunday afternoon, Paul Burton asked if we would like to go into the house to hear the song he sang at his church.  It was recorded at Christ The King Presbyterian Church.  After my eyes took in all of the beauty of nature, the song Paul Burton sang sealed a strong message into my heart at the beginning of this Holy Week:  

Yours, O LORD, is the greatness and the power and the glory and the victory and the majesty, for all that is in the Heavens, and in the earth is yours.  Yours is the kingdom, O LORD, and You are exalted above all.  I Chronicles 29:11

To hear the hymn Jesus True and Living Bread that Paul Burton sang click on the following link: Jesus True and Living Bread.  This particular tune was written by David Jordan and accompanied on piano by Donna Grace Van Cott.

Words by: George H. Bourne
Music by: David Jordan
Copyright 2007 David Jordan
Admin by: Swiftly Running Music
Album: Restoration Project
CCLI#: 5139260