Wednesday, December 31, 2008

New Year's Eve

Qavah is having her evening bath. The house is quiet after a long day. She had so much energy today that rather than walking she jumped and hopped everywhere. I was imagining adults losing extra holiday pounds by doing the same. Wouldn't that be fun for a change?

Kathryn and I are packing and getting ready to drive into the Washington, DC area for a wedding this weekend, so naturally we are excited as well. I have had a sense that I am on the verge of an adventure this year, as though my name has been called to win a prize. So, on the eve of this new year, I want to thank the Lord in advance for the adventures He has in store for me. I wish the same for you. Happy New Year!

Monday, December 29, 2008

Eighteen Eggs

Last week I accidentally left a carton of eighteen eggs in the trunk. About five days after buying them, I needed them for a recipe and wondered where they were. They never made their way into the kitchen and I found them in the trunk. Not wanting to take a chance on poisoning anyone, I put them in the refrigerator and told the family that they could chuck them into the woods when they had a chance. The last two pictures on the last post show Paul and Todd with a catapult about to chuck them into the woods. All the guys took turns splatting them on the trees. When some of them hit their mark they really exploded in a gooey mess and we all cheered. It may not seem like a big deal but it was actually a lot of fun.

Today is our thirty-fifth anniversary and I must say it is nice to be married to someone who took my mistake and made it so much fun for everyone including me. That's grace. That is probably the secret to many happy marriages.

Saturday, December 27, 2008

Family Gathering

Yesterday the family started arriving and by dinner time there were eighteen of us here to enjoy time around the table. The Talbott family sang after dinner. It was beautiful. Their harmonizing was sweet and melodious as they sang of the Savior's birth. John and Jacqui from Charlottesville brought the traditional homemade goodies, and their smiling kids. Cousins played computer games, laughed and joked, and just generally had a good time together. Sandra and Joshua joined us because Dan and Julie were out of town town spending Christmas in eighty-degree Florida! We laughed, played games, played the harp, and ate too many sweet things. After dinner the girls all walked to Paul Burton's apartment to watch "Miss Potter" on the big screen while the men stayed at the house to talk about guy stuff.

In the news last week I saw several articles about surviving family gatherings at the holidays. It was interesting to read about all the ways to avoid conflict with relatives and how to get through the day without any harm coming to anyone. I thought about that last night while our family was gathered here. Not because there were any volatile moments but because of the harmony. I'm grateful for it. The uniting factor for our family is the shared faith that we have in God and the belief that He is ever present in every conversation. Yes, there really are people who live like that! We've shared many events over the years as we raised our children. Nearly everyone here had been on a missions trip at some point in their lives, and there was a shared interest in the things happening in the lives of other family members. Many families do not have those things in common. And the icing on the cake was having Kathryn and Qavah feeling well enough to be a part of it all.

This anniversary marks our thirty-five years together. It sounds like a long time but it seems like only yesterday we were waiting for the minister who was fifteen minutes late for our ceremony. There were no cell phones back then and we were beginning to wonder if he had forgotten us. The guests were all seated and we were ready. Then he appeared (having been delayed by a Michigan blizzard) and married us, and we all lived happily ever after with a few arguments along the way.

Thursday, December 25, 2008

Christmas Joy

Paul Burton and I went to a candle-light service at the First Presbyterian Church in downtown Roanoke last night. We got home after midnight, which was close enough to Christmas morning to wake up the girls who had been sleeping for hours. The house was cozy and quiet as Paul Burton made the tea and put some Irish shortbread on the table. The soft lights from the tree made the room twinkle. We began to open gifts and sip our tea. Before long we were watching Qavah through sleepy eyes. She had more energy than any of us and could have played with her new things all night but decided to go to bed when the rest of us headed there.

Once upstairs, Qavah climbed into the rocking chair with me and I told her the story of how we found her for the hundredth time. I told her she was a gift, like a Christmas gift, and that every day I get to play with her. When she fell asleep I put her in bed and crept into Kathryn's room. By the light of her miniature tree we whispered about the evening and the candle-light service until my eyes closed. Kathryn said I snored but I think she meant I whiffled,which sounds much more feminine. We woke up to bright sunshine and mild weather and I thought of family back in Michigan shoveling snow. The day we have planned includes a nap and plenty of rest.

Today, Lord willing, I'll sit in my fluffy chair in the library and re-read all the wonderful Christmas messages again. I'll take care of the needs of the family and probably doze off half a dozen times. Enjoying all these things is God's gift to me. The peace I have, and the faith I've been given to face the future boldly, are all the benefits that come from believing that Messiah was born, and that He came to save and restore my soul.

For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Isaiah 9:6

Tuesday, December 23, 2008

Help for Kathryn

We have had many answers to prayer. Kathryn saw the doctor yesterday and found that while her gums do need surgery after the first of the year, the source of her pain is a very large ulcer along the gum line. Her hematologist wants to draw labs tomorrow to make sure there is no infection associated with the ulcer. The dentist also took a mirror and showed me that there are several more ulcers developing behind her front teeth. He asked whether Kathryn had any trauma over the past few weeks and when I explained her reaction to the drug Boniva, he said that he thought this was all a part of it. While Boniva seemed to be helping to build her bone at first, it has done some major damage this time. It is also responsible for the pain in her jaw. I have a website address to report her reaction to Boniva that one of her other doctors sent to me, and I plan to write that out later today. Her bruising has stopped now, and I'm hoping these ulcers pass just as quickly.

We are looking forward to celebrating Christmas with extended family and hope Kathryn will be feeling better for that. Kathryn's electrolytes are off again and she hasn't been able to get up yet this morning. Paul Burton and I were just discussing the fact that the Boniva is still at work drawing too much calcium from Kathryn's bloodstream. So over the next few months we will just have to give her the right amount of calcium to keep her body better balanced. One thing this drives home to me is the awesome way in which we were created. Everyday we wake up, go to work, eat, and sleep, and most of us never have to think about keeping things in balance. The fact that God has designed us in such a way that many of our bodies function year after year without a glitch is amazing to me. We outlast our automobiles and appliances.

We appreciate your prayers so much and the encouragement you give us. We received many emails with your prayer requests and have prayed for them all. We hope that blesses you back!

Sunday, December 21, 2008

Trying to find Help

The weekend has been a bit of a challenge as Kathryn has faced some painful reminders of the complications of HPS. Last Friday her gums began to bleed. Because of her platelet dysfunction, that was hard to get under control. By Friday night the pain in her jaw prevented her from eating, and by Saturday afternoon she was pretty much miserable.

Kathryn's gums have been receeding for the past year to the point that her roots are now exposed. That was due in part to her medications and bowel absorption problems. But before grafting can be done there is the matter of infection and bleeding to address. I had called around Roanoke looking for an oral surgeon when I noticed the need for more grafts this past summer. But when I explained Kathryn's condition, it seemed the concensus was that she needed someone better qualified.

Yesterday we finally contacted an oral surgeon that had worked on her mouth before we knew Kathryn had HPS. He did return our call this afternoon. But now Kathryn is running a fever and the pain is unmanagable. That surgeon is trying to locate Kathryn's hematologist to discuss what can be done. She needs the help and as things have gotten worse for her throughout the day her adrenal system has taken a hit. I've increased her prednisone and am trying to keep her electrolytes balanced.

Kathryn and I spent several hours praying this afternoon and the focus of her prayers are not for herself. There are so many needs in the lives of our friends right now. Although it is such a blessing to ask for prayer from our blog readers, we understand that there are many others who need our faithful prayers as well. Send us your requests because Kathryn said we will be up tonight.

Thursday, December 18, 2008

Christmas Cards

Paul picks up the mail at the end of his work day and brings it to the house after parking his car for the night. It's almost dark when he arrives home but when he opens the door with a hand full of Christmas greeting cards everything seems to brighten up a bit. I particularly enjoy the cards with family pictures and news of friends I've loved for so long. After devouring the words I put the greeting cards in a basket for the rest of the holiday season. I'll reread them in the days to come, pondering the grace of God in all their lives.

The basket of cards is left out on a table so that when the grown kids are home they can look through the basket as well. They'll pull one out and say something like, "Wow! I remember when they visited ten years ago and..." They also have fond memories of growing up and enjoying our friends. I do treasure the time I get to have with friends, even when it is sitting with my feet up in a comfy chair and reading their newsy letters about the events of their lives this past year.

My grandmother and her friends used to save all their Christmas cards, punch small holes along the edges, and then stitch them together with yarn to make a Christmas basket. I remember sitting with one of those baskets on my lap examining all the different Christmas cards. When I was little I thought the most beautiful cards were the ones with sparkles glittering in the light. But of course the most beautiful cards are the ones signed, "Love..."

Saturday, December 13, 2008

Stink Bugs

With the girls both feeling well today, I thought it was time to decorate for Christmas. We unwrapped the Christmas tree today that was stored away in the barn. It had an offensive odor that I couldn't quite place. Then as the limbs of the tree were straightened out I noticed there were stink bugs hiding on the trunk of the tree. We got wet paper towels and got them off and I wondered if other neighbors have had as much of an invasion of stink bugs this year as we have had. I do have to say that I was a little intrigued by their choice of hiding places because our tree looks very real. The trunk is made from a real tree and holes were drilled into the bark to insert the branches. After the tree was sprayed with room freshener and decorated it looked wonderful. And no one would know our Christmas tree had stink bugs, unless they read this blog!

As we were hauling out the Christmas items this year I thought, "Do we really need to do all these things?" As I placed the greenery, lights, and gingerbread house, in their "spot" I didn't have the enthusiasm as in years past. But when everything was in place Qavah stepped into the room and said, "Oh, Mommy it is so beautiful!" She was so excited and expressive in her praise that I thought, "Enthusiasm or not, I have a new little reason to keep doing this year after year." Stink bugs or not, I'll be keeping the tree.

"Do not store up for yourselves treasure on earth where moth and dust (or stink bugs) doth corrupt, but rather store up for yourselves treasure in heaven..." Matt 6:19

Thursday, December 11, 2008

Moving Forward

As Kathryn explained on her blog tonight, her challenges with the Boniva (bone building drug) will probably mean she won't be taking it again. She is stronger than she was a year ago and I think she will continue to improve with calcium supplements and exercise. I came home and found a message in my email from one of Kathryn's doctors. He had read the blog and did some checking on the side effects of Boniva and sure enough other cases like Kathryn's have been reported. Although many of the drugs Kathryn is on have side effects, they are allowing her to live a good life. There are so many unknowns with HPS but maybe by reporting these simple findings and adverse drug reactions we can help someone else.

Wednesday, December 10, 2008

Troubled Waters

Kathryn told us during dinner last night that there was a high pitched ringing in her ears and that her heart was racing. I immediately blamed it on the sodium in her dinner and thought she would be fine if she consumed water to flush it out of her system. But by nine o'clock she was much worse and unable to communicate. Her muscles were locked and she had difficulty breathing. I prayed for wisdom and sat down to think. It suddenly occurred to me that Kathryn had just had her third treatment of Boniva two days before. That drug pulls calcium from the bloodstream and helps to rebuild bone. I think her bloodstream was not able to supply the right balance for the Boniva so I reached for calcium and vitamin D and gave her magnesium to loosen her muscles. While attempting to correct her electrolytes she began to feel a crushing pain in her joints and I gave her extra prednisone. As all these things began to work in her system I had a feeling that God was guiding my thoughts and helping me. An hour later Kathryn was able to sit up and talk to me but her electrolytes have been off all day today. In spite of that she went to work and took extra medication with her. Tonight she went right to bed but I am noticing her body is now covered in bruises. They are everywhere. I am hoping the hematologist can see her tomorrow because she is feeling exhausted. Her last blood draw was yesterday and it showed very low iron levels as well as low white and red blood cells.

Although the waters seemed troubled during the night, there have been periods of sunshine today. I was able to enjoy playing with Qavah and Annelise early this morning. Qavah also had her transfusion at the hospital today and is feeling much better. She is hanging on to the three pounds she gained this month and the nurses cheered for her. I was so proud of her for holding her little arm out and accepting another transfusion even though she just had one two weeks ago. She's very brave.

I am looking at my normal Christmas "to do" list and have resigned myself to the fact that I'm going to have to let a lot of holiday traditions go this year. But I do so without guilt, knowing we will not put aside the most important thing; the worship of the newborn King, Who grew up sinless, was put to death, raised to life, and now intercedes for me, guiding my mind and hands as I care for my girls. He is worthy to be praised.

Sunday, December 07, 2008

Sunshine and Fine Days

After a couple of gloomy cold days, the sunshine broke through the clouds this morning and the day became a glorious winter Sunday. Paul Burton sang Handel's Messiah again this year at the Jefferson Center. He just arrived home in his tuxedo and looked very festive and happy as he told us that the performance went well. Roanoke offers several family Christmas favorites with the production of Scrooge, The Nutcracker, and Holiday Pops. Colin and Jennifer were able to stroll downtown Friday evening to enjoy the lights and "Dickens of a Christmas" which is a yearly tradition held in downtown Roanoke. The shop windows were decorated for Christmas and there was caroling and horse drawn carriage rides.

Before major holidays I like to totally clean my house. For me, having a clean house is part of the fun of celebrating. When junk mail is gone, and floors are clean enough for babies to crawl on, it's like a fresh air blew through the house. Paul was in Texas on business last week and with Christmas coming I decided to use that time to rent a carpet cleaner. I cleaned eight rooms and the staircase in two days. Kathryn worked right along with me and I was amazed by her strength. She has been gaining strength over the past two months and together we laughed and joked about it being like "old times." It has been awhile since she was able to help out with that kind of housework. Tonight all the furniture is back in place and it's beginning to look a lot like Christmas.

We are so rich in blessings. Qavah is legally ours, her health has improved greatly, and Kathryn is able to do so many things that she has not been able to do in two years. There is only one explanation for this, and the reason we celebrate Christmas; Emmanuel, (God with us).

Tuesday, December 02, 2008

Qavah's Medical World

My neighbor Kim brought six cases of Pedia-Sure over for Qavah tonight. She had extras. Qavah drinks them like milk shakes and it adds seven hundred calories to her diet per day. She has gained three pounds since November 12th and has managed to keep them all! I can hardly wait until the GI doctor sees her next week. She looks so much better than the last time he saw her. If you've had a child who was not thriving and suddenly things get turned around, you know what I mean when I say every ounce is worthy of a "hallelujah!" shout. I am also fortunate that Qavah takes her bitter pancreas medication faithfully without a fuss. She got it out of the refrigerator tonight and shook it herself. She said, "Time for my nasty medicine!" It is another gift to us that she takes all of these things in stride. Children adjust to things so quickly.

Another thing I find endearing is that once Qavah gets to know some of our guests, she will check their arm veins to find the best ones for drawing labs. This is all so much a part of her world she thinks nothing about rolling up a sleeve to check for a plump vein. In spite of the fact that her first five years have been wrapped up in the medical world, we are praying that she will one day be free to live her life without transfusions. She's old enough now to remember these tough times, and wise enough to know that when a cure comes, it will change her life. "Bring it on, Lord!"

Monday, December 01, 2008

St. Andrews

We were all able to attend Lessons and Carols at St. Andrews church last evening. We sat on the second row together and I felt such a great rush of gratitude for the good health we were all enjoying. The fact that we could all be there listening to such an accomplished choir in the beauty of St. Andrews sanctuary, was a miracle to me. Every day is a gift.

Yesterday was a wintry day here in Virginia. The wind and rain held steady most of the day and it was the kind of cold rain you can feel in your bones. Seated in the warmth of the sanctuary of St. Andrews, surrounded by people who had come to enjoy the celebration of the birth of Christ, we felt the warmth of His presence. For his December first meditation, Charles Spurgeon wrote, "How we prize the fire just now! how pleasant is its cheerful glow! Let us in the same manner prize our Lord, who is the constant source of warmth and comfort in every time of trouble. Let us draw nigh to Him, and in Him find joy and peace in believing."