We are happy for Katy tonight because she is up and moving around without any difficulty. Within hours of her treatment, the inflammation of her vascular system is already settling down and she looks so relaxed and happy tonight. The mercies of God saw her through the night because we were awake and praying until it was time to get up this morning. Pain relief was not to be found in her medications last night. Therefore, prayers were said for so many of you; prayers for healing and blessing for as many of you as we could call to mind. We know that the Lord is alert and hears us throughout the night. But tonight we are planning an early bedtime and hopefully a good night of sleep.Comments:
Wednesday, November 28, 2007
I don’t know how many people get excited about a scab, but let me tell you we are jumping for joy today. The drug Katy used on Monday is a nasal spray called Stimate. It helps bring bleeding under control and speeds healing. She will be using one squirt in her nostril three times this week (every other day). After the first dose I had soaked Katy’s wounds and applied the dressings hoping for things to look better by today. I checked this morning and the open, seeping wounds have scabbed over. They are beautiful! They are perfect! The Stimate can only be used when she has a bleeding episode like this, and since she has never had this happen before we are hoping these episodes will end as the Methotrexate begins to work on the inflammation problem. I am not kidding when I tell you this stuff is like a miracle in a squirt bottle. We have been so blessed to have been given the prescription and that it worked for Katy.
We are so thankful for this encouraging victory. We slept through the night last night without getting up for pain medications as well. We feel so refreshed when we have an uninterrupted sleep. So today we are having a quiet day and enjoying the reprieve. Katy has been talking about getting some wrapping done this afternoon. There is a steady stream of packages arriving in her name. She is doing all her Christmas shopping on the internet this year and being very creative about it, too. We are so thankful for this good day. Thank you for your encouraging comments. It’s like having a cheerleading team chanting, “go, go, go, go, go!” And we are!Comments:
Monday, November 26, 2007
This afternoon I called the pharmacy to see if I could crush the methotrexate Katy is now taking and put it into applesauce. She is supposed to take ten tablets each Monday. She took the first dose last week on her own so I failed to notice that the methotrexate was coated with an easy-to-swallow coating. When Katy takes drugs with a coating like that, they usually don’t even digest. We have had to start giving some of her medications in liquid form because of malabsorption problems. So after seeing the tablets were coated and clearing it with the pharmacy, I ground the tablets and she took them this afternoon.
Katy’s bruising and bleeding problems continue and that is due in part to the fact that the medication she should have been taking all this time (the one prescribed last week) has not been available in all of Roanoke. The pharmacy had to special order it and we believe that it will arrive by Fed-Ex tomorrow. This afternoon Katy woke up from a nap and started bleeding from her ear again. I have finally figured out that once a doctor has seen something of Katy’s condition, and makes a diagnosis, we just have to give the medications time to do their work and see if the problems go away. It is a frustrating position to be in; it takes qavah (hope and patience).
I do wonder every day, “How long, Lord, how long?” I wish I had a date to point to and know for certain Katy will be better. I wouldn’t be human if I didn’t. But still we see the blessings of God in so many ways, especially in the acts of kindness of others. Katy’s college adviser called today to help us with a plan to file an extension so that Katy can try once again to finish her two classes and graduate in the spring. They were cheerleaders for us today, and it encouraged me beyond words to hear the conviction in her adviser’s voice. There is a commitment on their part to see Katy meet this goal. Since some of them read the blog, let me say a hearty thank you for the phone call today!Comments:
Sunday, November 25, 2007
I was in a high school musical in eleventh grade and I remembered a line from one of the songs as I decorated during the last few days. “We need a little Christmas, right this very minute, candles in the windows, carols at the spinet.” I hummed it and thought, “This is just what we all need:” the lights, the greens, the festive mood, the Christmas music playing, and to focus on the hope that is within us because of the very first Christmas. It is always a big mess to pull out the Christmas boxes, then suddenly all the old familiar decorations are in place, everything falls together, and I walk around the house with a heart full of wonderful memories. Paul Burton’s second-grade macaroni ornament is back on the tree again this year like an old friend. The stockings are hung. They’ve seen many years of toy trucks, and baby doll accessories. Now they get filled with grown up things like soaps and perfumes. And in the midst of every newly opened ornament box there was Qavah to exclaim, “Mama, it’s so pretty!”
Although this has been a very difficult time for Katy and her care has been labor intensive, we are enjoying life as we never have before. Everything is more precious, especially the way their eyes sparkle when Katy and Qavah are looking at the colorful lights on the tree. These are very good days. I’m tucking them away in my memory the way I’ve tucked away the macaroni ornament every year. In years to come they will be my old friends. I only hope my memory holds up as well as macaroni noodles sprayed with gold paint. God bless you as you prepare your homes and hearts for Christmas.Comments:
Friday, November 23, 2007
This will be just a brief post to thank you for entertaining us with your comments. Today we ached for Katy. We pray these days of suffering will change soon with the new medication. We got the Christmas decoration boxes out this afternoon in an effort to think and dream about better days ahead. Although it is hard to live like this day after day, we have faith that God is hearing our cries. I’ll close this post with a Thanksgiving prayer from our home to yours.
We humbly thank you for the goodness you show to us every day. Our focus is not always on you but today is Thanksgiving. We begin with our gratitude for your love for us, in that while we were sinners you sent your beloved Son to die for us and gave Him the victory over all the things that keep us from approaching you. You have pardoned us when we were yet unrepentant. You have called us your children when we were far away from you. You have heard our childhood prayers, our sudden screams in an emergency, and our heart-wrenching prayers of desperation when we had nowhere else to turn.
Thank you Father, for the friends and family who stand with us believing that you are a mighty God, strong in battle. You battle for us when we are helpless to defend ourselves. Who can know the times you have stepped in between us and calamity? Your ways are higher than our ways, Father. How can we thank you for the suffering we have all endured on this earth? Can we honor you, Lord, by turning our suffering into stepping stones that will lead others to know you better? Let it be, Father, that our life stories will reflect your nature and your goodness, so that others will come to know you. Your Word says that you are preparing a banquet, where we will drink the cup of praise together in our eternal home. All are invited if we will accept your invitation. Father, I pray that each day we will be just a little hungrier to know you in a personal way. Nothing would be more glorious than to be at your banquet table, where we will all be able to eat a Thanksgiving feast like no other and enjoy the glorious flavors of heaven, without pain or suffering. But above all, You will be there, Father. With all the nations, tribes, and tongues gathered around your throne, we will all shout our Thanksgiving with one voice saying, “Worthy are you to receive honor, and glory, and blessing!” Amen!Comments:
Wednesday, November 21, 2007
We just finished watching a movie on the life of Franklin D. Roosevelt. The movie focused on the years when he was stricken with polio, and his remarkable return to political life after rehabilitation. We were discussing the movie afterwards and I got to thinking about the fact that polio is seldom spoken of anymore, yet back in the early 1900s it was greatly feared. We are blessed in so many ways because of scientific breakthroughs. Tonight while Katy watched the movie she soaked one of her feet in a special solution to calm the pain and clean the wound on her ankle. After soaking it, an antibiotic ointment was applied and a new type of band-aid was applied that protects the wound but lets it breathe. She just had her pain medication and Paul and I got her in bed. All of these medical helps are giving Katy as much relief as possible, and we are very grateful for them. The things people used to have to suffer without these medical advancements only get our attention when a movie takes us back to that time. So tonight we are thankful for all the comforts we have now that our parents remember living without.
It is almost Thanksgiving Day and we were thinking about the precious memories so many of you shared with us about books you remember. I wonder if there are more stories you could tell us about the Thanksgivings you’ve enjoyed, or your family traditions. I have decided not to bake for Thanksgiving in an effort to keep the delicious aroma from torturing Katy who is still struggling to eat just a few bites. You could make our Thanksgiving holiday so very special by sharing your Thanksgiving thoughts and stories. We will “feast” on those this year. God Bless you and have a wonderful Thanksgiving!Comments:
Monday, November 19, 2007
I can’t tell you how many times we checked your comments yesterday and today. We even debated whether or not to update the blog because we enjoyed your contributions so much and didn’t want to change the topic. Sometimes your comments about the things you do and the places you go help take us away from here for a little while, just as Aunt Lil said. Please keep sharing your stories with us. You made a lot of your childhood memories come to life for us, and we certainly enjoyed thinking about you all when you were little. Sometime we would like to hear Kendall reading Huck Finn! I am so happy for those of you who wrote about having a child to read to. It is one of life’s joys and if you need a child to read to remember those young moms in your neighborhood or church that could use an hour to get something done while you enjoy reading to their little ones!
“The Katy” is feeling hopeful right now. Today the hematologist took a good look at everything and concluded that Katy could use some help. It took twenty-five minutes for her finger to stop bleeding when she had her blood checked at his office today. He looked at the sores on her body that are not healing and decided to try a drug to improve her clotting time. His diagnosis was vasculitis. We looked it up on the internet and so many of her symptoms were consistent with that diagnosis. All of her problems of rapid heart rate, body aching, fever, chills, inflammatory problems, unbearable pain, and generally feeling sick were listed under vasculitis. This afternoon she will begin a new treatment (new for her) called Methotrexate. It is a drug to replace the Imuran that was so helpful but problematic for people prone to having pancreatitis. Her GI doctor and Hematologist agreed on the dosage today, and we will be starting that tonight. The medication takes awhile to work in the system, so Katy may not feel much relief for three weeks. We are praying that her body will not only tolerate the drug, but it will work very quickly. We are all very hopeful today, but cautious. We are really being super careful about disinfecting sheets and towels because of Katy’s open wounds and MRSA. MRSA is always around, but with a compromised immune system we know how diligent we all must be.
Winter is fast approaching and at four in the afternoon the sky is already darkening. We long for better days for Katy, and hope they will arrive before spring. We thank you for your many acts of kindness that continue to flow from your hearts. Friends dropped off fresh chicken for dinner tonight and again I will not have to cook. Thank you for putting the warmth and light into these shorter winter days.Comments:
Saturday, November 17, 2007
It is almost six o’clock in the evening. Although I’ve cleaned, straightened, cooked, and done laundry, I am still in my pajamas. Paul said, “If I ask you out on a date tonight would that be incentive enough for you to get dressed?” Yes, that would do it! We are going to Barnes and Noble for coffee and a book. We just discovered that a book we’ve been waiting for is now on sale. It is the eighth book in a series about the Number One Ladies’ Detective Agency. When we get home I’ll get my electric blanket ready, Paul and I will get our cups of hot red bush tea, and he’ll start reading to me.
A bedtime story has been a tradition from the first week we were married. Paul started reading the Winnie-the-Pooh series to me when I was eighteen, and from there we have spent many hours in the late evening reading all kinds of novels to each other. During the past year and a half we have come to the conclusion that romantic moments don’t just happen, they have to be planned. With all of life’s demands, it would be easy to forget we have a relationship to nurture, so I’m glad for the tradition Paul established early in our married life. Along with growing in our faith, taking time for reading together has kept us both from despair on a number of occasions.
Katy and Qavah are staying home with Paul Burton. They are about to watch a DVD of little stories about Madeline. We got the DVDs from the library and Qavah has watched them several times with all of us. She can quote them. We are happy to give her the experience of watching books come to life, and as the story begins it takes me back to when each of the children would cuddle up and listen to us read to them. They each had a book that became their favorite. It is our hope that they will all enjoy reading aloud to their spouses and their children, and enjoy it as much as we have.
In an old house in Paris covered with vines,
there were twelve little girls in two straight lines.
They left the house at half-past-nine,
in two straight lines, in rain or shine.
The smallest one was Madeline.