Saturday, January 31, 2009

Sunshine, Clear Sky, New Microwave Oven

We've had just enough rain lately to wash the atmosphere squeaky clean. Today the mountains were stark gray against the clear blue sky and it seemed like the sunbeams bounced right off of them. It was a day for sunglasses without the warmth of summer. The girls and I had a lot to do since it was Remicade day, errand running day, and the microwave oven gave out before company coming this evening. I called Paul on the way home from the hospital and told him I needed a new microwave by dinnertime. I guess he checked his watch, then asked, "How are you going to shop for, and buy, a microwave with dinner being an hour-and-a-half away?" That sounded like a dare to me! I pulled into the nearest home improvement store where I had remembered seeing microwaves before. I looked at the white microwaves, picked the one with the most visible numbers for Kathryn to see, and had it at the register in less than ten minutes. So next time you are browsing the stores together and your husband asks, "What are we looking for?" you can tell him that browsing is good practice for "buying" in a future emergency.

Kathryn is feeling better tonight and did have her piece of apple cake. Qavah's doctor called this afternoon to say that the results are back on the genetic testing and we have an appointment to go over the findings next Tuesday morning. I've heard a friend with many challenges say recently, "It's all good." That's how I felt about today.

Thursday, January 29, 2009

Remicade Tomorrow

Kathryn hasn't eaten much today but has her heart set on a piece of home-made apple cake after her Remicade treatment tomorrow. It is amazing how fast that treatment settles things down. She had a hard day, but still got in a full day of work. I am so thankful for Remicade. Qavah has been such a good girl today and helped me with little chores around the house. We taught her how to empty the small trash cans from the bathrooms into a large bag. When she sees the little cans filling up she has been emptying them several times a week all on her own. Her other job is to clean the fuzz from the dryer lint trap between laundry loads. She likes the feel of the soft lint and rolls it into a ball. Both girls are doing very well. They have their aches and pains but they have smiled a lot today. Paul and I are thankful for these good days.

Father help us to be glad for all you are planning for us. Let us be patient in trouble, and prayerful always. Romans 12:12

Tuesday, January 27, 2009

No Snow!

We had no snow today but the warnings for freezing rain continued through today. We did not see anything but rain. The roads were clear when Qavah and I drove to the hospital early this morning for her transfusion. She is energetic and happy so I do wish we had snow for her to play in. Thank you to everyone around the country willing to send your snow our way. We have had some of our best snow storms in March so perhaps we will still see some of the white stuff then.

Kathryn stayed home from work today. Her office took a snow day anticipating that the weather would be too bad for driving. Since that didn't happen, she did five loads of laundry instead. It was great having her home for the day. Since Paul Burton had his Tuesday night chorale practice canceled we were all home for dinner, too. Come to think of it, we've all enjoyed our snowless snow day!

Saturday, January 24, 2009

Fifteen Day Forecast

I checked the national weather service forecast for Virginia and found that the next fifteen days look mild and sunny. We would only have to drive an hour toward Covington to the higher elevations to play in the snow. We may have to do that if Qavah is going to have any fun in her new boots this year. The weather was mild enough today to ride in the wagon and play on the swings so Qavah had a happy day and went to bed early. Anne, a friend of mine, sent me a link to a website that shows the plans for making snowflakes. If you don't live where all the snow is right now, you may want to make some for yourselves. http://www.craftstylish.com/item/28838/how-to-make-a-snowstorm

God bless your Sabbath Day with plenty of rest and joy.

Wednesday, January 21, 2009

Health Updates

Kathryn saw the GI doctor yesterday and he took a look at her mouth ulcers and lip blister. He thinks it would be a good idea to wait to give her Remicade because it would take the ulcers so much longer to heal. So while she has been thinking Remicade this Friday is a good idea because of her other current problems, she has been asked to wait on her treatment giving the mouth ulcers more time to heal. These mouth ulcers have been a problem since the week before Christmas. The problem is wearing on her system but she still went to work today and had a good day. Yeah Kathryn!

Qavah saw her GI doctor today and she is back on a medication that he thought she was ready to stop. After four days of being off one of her medications, she had started having problems with her bowels and loss of appetite. She has lost a pound since Sunday. Her pancreas is happier with Ursodiol. We have some ground to gain, but after the first dose this afternoon she wanted to eat a banana. Several of you have asked whether we have received the test results from her genetic study. We have not, and while I'm not sitting home waiting for the phone to ring, I'll be glad when it does.

We are enjoying Netflix during the day as well as the evening now. Qavah has been watching old musicals and dancing along with Fred and Ginger. I don't know if it is the long flowing dresses or the happy music but she has been one cheerful girl these days. I bought her a princess "dress-up" gown on Tuesday. It has a very large collar which she has declared to be "fairy wings." Paul was at home babysitting Qavah and I was in my car when my cell phone rang. When I answered he stated, "This dress is dangerous!" I said, "Well, if it is too long I will hem it up when I get home." "That's not the problem," he said, "she keeps jumping off high places expecting to fly." While she has a few health issues there is absolutely nothing wrong with her imagination.

Tuesday, January 20, 2009

Visit from Helen

I got a call from my friend Helen two days ago and discovered that she would be in the area for the next few days so we got the guest room ready. We just had a late dinner and we are all going to bed early this evening. Although we can't pinpoint anything particular, I can tell Kathryn is not feeling well. It isn't a sore throat or anything, just tiredness, a fever blister, and not the usual pep in her step.

Qavah sees her GI doctor tomorrow. She also told me several times today that she was tired and fell asleep in her car seat when we went to take Kathryn to her appointment. I listened to the radio in the car from time to time as I made my way around Roanoke this afternoon and caught bits and snatches of the speech the world was waiting to hear. I heard the words, "Tough times, worsening economy, and failing businesses." It sounded like those times in the Charlie Brown features when an adult is talking to the children and it comes out sounding like, "Wa Waaah, wa wawa, waaah, waaahhhh." It put Qavah to sleep, and put me in a frame of mind to rest this evening in the promises of the One True God.

Monday, January 19, 2009

Needed: SNOW!

Qavah woke up around nine this morning, ran to the window, and saw that it really was snowing at last. She got so excited she put her boots on over her pajamas and wanted to go outdoors right away. Within minutes the snow stopped, the sun came out, the dusting of snow melted, and Qavah looked very disappointed.

We've been taking naps and relaxing over the past several days. Our weekend was quiet and restful. I'm thankful for that. The rest is sweet, and we have been needing it for months.

Friday, January 16, 2009

Wintery Chill

The outdoor thermometer saw the lowest temperatures we've had in Virginia in a very long time. Below zero temperatures are foreign for us, so it is rather shocking to the system. Since last Monday, when Qavah got her new pink winter boots, she has been waking up in the morning looking for snow. She is wanting to try out her new boots. If it is going to be this cold, it would be nice to have a little snow to go with it. Qavah is praying for snow at bedtime. She thinks that any day she is going to wake up to a blizzard. Let is snow, let it snow, let it snow!

Wednesday, January 14, 2009

Dreaming

Dreams come true! Dreams start with an idea. The idea starts to take shape, and before you know it you are buying a horse! Qavah started telling people four weeks before Christmas that she would like to have a horse for Christmas. I listened at a distance and thought about getting her some movies about horses to fan the flame of her dream. When anyone asked her what she wanted for Christmas she would say, "just a horse!" One of her nurses asked her, "How are you going to get the horse into your house?" Qavah nearly fell on the floor laughing at the idea of trying to get a horse into the house. I had to admit that Qavah really wanted a horse, not just a movie about a horse, and I told Paul we had to come up with something or see a very disappointed girl at Christmas.

We discussed taking Qavah for a horseback ride, books about horses, toy horses, and nothing came to mind until the week before Christmas. I went to the computer and looked at various rocking horses until I found one that would fit her for a few years. One that would handle up to one hundred pounds at least. Hoping for the best, I ordered a horse and anxiously wondered if seven days would be enough time to get it here from California. On Christmas Eve a big box arrived. Inside was a pinto pony and it was as wonderful as the picture I had seen on the internet. Qavah rides everyday and the pretending is never-ending. Her horse's name is "Checkers." We've noticed Qavah's legs have been getting stronger from rocking. In every way we are thankful to have Qavah and thankful that we can help make her dreams come true.


Tuesday, January 13, 2009

DNA On the Way

Yesterday morning when Qavah and I got to the hospital lab, the documents, test packaging, and lab technicians were waiting for us. By the time we left, the samples were being packaged for the airport. Qavah's blood samples were supposed to arrive in Spokane by evening. This is the test that is most likely to give the scientists the information they need to help the doctors treat her disease. I signed a document giving them permission to use their findings for future reference in other cases of rare diseases. I hope it helps others in some way.

For last week's blood transfusion it took the nurse four different tries to find a good vein in Qavah's arm. Qavah was not very happy about that. I knew I had to give her a good reason to hold her arm out again for this important blood sample. So I had the idea of rewarding her by painting her fingernails pink if she sat very still and didn't make a fuss. While she took her bath early yesterday morning I held up the brightest pink nail polish I have and asked, "If you are brave today, can I paint your fingernails when we get home from the hospital?" She really got excited about that idea and did some squealing to prove it. Just before the blood test I whispered in her ear, "nail polish for a brave girl!" Holding out her arm, she sat up brave and strong! And to make a long story short, she fell asleep last night staring at her pink fingernails looking very satisfied.

Lord, thank you for the ways you think of to comfort us and delight us when we are called upon to do something difficult. Thank you for pink nail polish. Amen

Sunday, January 11, 2009

Couch Potatoes All

This afternoon was rainy and cold. Our house has reached it's wintertime dampness level. That means even with wearing sweaters we have started feeling a little chilled all day, a little aching in our bones, and started talking about a trip to Florida to warm up. So we sat on the couch under blankets watching a movie. We watched The Scarlet and the Black. It is based on a true story of a Roman Catholic Priest during WWII. He bravely helped over 4,000 people escape the Nazis during the German occupation of Rome. It had all the elements of a great movie with a great ending.

At the close of this day we are getting ready for another work week. We talked to Qavah today about the important blood test she is going to have tomorrow. She was actually really intrigued as we showed her pictures today of cells that could be seen under a microscope. We told her that we might find out why some of her blood cells disappear every day. I started giving her more information about these things since I discovered that Qavah has some anxiety about what is going to happen to her. Paul and I took her to an office building recently to take care of some adoption paperwork and with a worried look on her face she asked, "am I going to get stuck (meaning a needle) today?" Since then I have made it a point to tell her where we are going and why. She is learning that she can trust us and that warms all of our hearts.

Friday, January 09, 2009

Genetic Testing

Qavah has an appointment to have her blood drawn next Monday for the genetics test that will be sent to the University of Washington. I don't know how long the results will take, but Qavah's doctor told us that she will set up an appointment to go over the findings as soon as she has the results. This is another giant step forward for Qavah's care. She takes everything in stride, but still prays at night to be healed. She has a very simple faith that I am sure delights the Lord. Last night as I was praying over her asking for clear test results she said, "Yes, and Jesus is going to help me!" There is no doubt in her mind that her help comes from a Higher Power.

I have had a bit of a sore throat for a couple of days. I am just going to relax today and drink plenty of fluids. Kathryn has the day off and has taken over the care of Qavah. I feel a long winter's nap coming on. I'm grateful for a warm house, old movies, soft blankets, hot tea, and a big sister for Qavah!

Wednesday, January 07, 2009

File it Away

I wrote out some thank you cards today and boxed up Christmas decorations. I have been reluctant to update the post because I loved going right to the pictures of our weekend and reliving it all. But with this post it will be filed away and pulled out when I need a lift. The good times are filed away for just that reason. As David said in the hard times in Psalm 77:11 "I will remember the deeds of the Lord; yes, I will remember your miracles of long ago."

Kathryn's mouth is healing so slowly but it is getting better. Qavah had a transfusion yesterday and today she is "full of herself", as they say in the South. It was a very happy day for all of us. I will find out tomorrow about the genetic test that will be done on blood taken from Qavah and sent to the University of Washington. They will test just the white cells so her transfused red cells should not confuse the test. Even if it does not give us answers, we are praying daily for a lasting remission. I do a lot of begging in my praying. I'm glad the Lord tells us to ask over and over, otherwise I would feel as though I were nagging.

Paul Burton bought us a three month gift certificate to NETFLIX for Christmas. NETFLIX is a company that has thousands of movies on hand that can be accessed and played on your home computer. I have to say we are in danger of becoming couch potatoes. When we talk on Paul's lunch hour it is to review which movie we will watch when he gets home. So far we have enjoyed several mystery series. When Paul comes in from work we have dinner, pack lunches for the next day, wash the dishes, then hit the sofa for a movie. It's like having a date every night. Bliss!


Sunday, January 04, 2009

GPS and Going Places

Before we left for Washington DC, I had maps printed out for every one of our destinations so Kathryn and I would know where we were going. But Paul Burton encouraged me to use his GPS, since I would be in so many unfamiliar places. I did not know how sweet that little box could be! It was wonderful. After hitting the Baltimore-Washington Beltway I let the GPS guide me. A kindly voice told me every move to make and which of the six lanes I should be driving in. I started thinking about how many arguments this little box could eliminate. Hearing a little box say, "recalculating; make the next left" is not nearly as difficult to take as hearing a spouse exclaim, "I told you to turn left back there!" If I had known this little toy was this cool I would have asked for one for Christmas. It got us everywhere we needed to be and Kathryn and I had so much fun.

Our first event was the wedding of Ryan Kirkwood. He came into our lives because of HPS. We met his sister Heather Kirkwood first, by phone, when I was frantically trying to reach someone at the HPS Network who could tell our doctors how to keep Kathryn alive. Heather picked up the call and assured me that with the right treatment Kathryn could make a recovery. She put us in touch with the doctors at NIH who helped so much in that first crucial HPS attack. Her calm voice, and knowing how many surgeries she had survived, gave us just enough hope to keep us from becoming overwhelmed. Ryan and Heather both have HPS, and therefore there were many friends with HPS attending the wedding and we were able to meet and hug them at the reception. Many of them had helped us from a distance over the last two years. It was a joy to meet them all.

HPS Friends (L-R) Karen, Julie R, Sarah R, Dawn, Kathryn, and Elsie:

Heather, Ryan (the Groom), and Sara (the Bride) with their Mom:


Ryan and Sara's wedding in Falls Church was held at a beautiful Anglican church that was over three hundred years old. It had all the charm and craftsmanship of some of the early brick homes of Williamsburg:


The wedding was wonderful, and so was the three layer German chocolate wedding cake. There were bright red roses everywhere on the tables, in the bouquets, and on the cake:


After the reception in Falls Church, we headed to Frederick, Maryland to spend the night with Oma. From the front doorstep to the fireplace in the back sitting room, the history of Oma's family can be found everywhere:



The pictures, china, cabinets, furnishings, and rugs all speak of days gone by. The charm and beauty was as interesting as Oma herself. She has raised her family, traveled the world, and still enjoys bird watching and entertaining. Visiting Oma was a lot like visiting a little school-girl friend. She has all the enthusiasm of a young girl, and it was plain to see how much she still enjoys "playing house:"

Oma even took Kathryn down to the cedar closet where the two of them tried on furs like little girls:



This morning, I woke up extra early to attend church with Oma while Kathryn slept in. All too soon we were pulling away from the curb while Oma stood on the sidewalk in front of her house waving her little white kerchief so Kathryn could see her to wave goodbye. I was teary-eyed watching her and I wanted so much so say, "Kathryn, let's go back!" But her grandchildren, Heather and Andrew, are due to arrive at her house tomorrow and fill the guest room once again.

Oma and Kathryn saying good-bye. Oma is wearing an authentic Scottish kilt:


Our drive from Frederick to I-81 was made easy once again by the trusty little GPS. In four hours we were back home. Paul and Qavah met us in the driveway. They were still dressed up for Sunday. Paul had even put a bow in Qavah's hair this morning before taking her to church. As of a few hours ago we are all unpacked and settled in for the night. There are memories that I treasure from this trip.

As Kathryn and I drove along we spoke of the wedding, the people we met, Heaven, the future, our dreams, and in the middle of the night we woke up in Oma's big guest bed to discuss how delicious her dinner had been, and how good it felt to sleep in a cool room under a big feather puff. I am so grateful for the people we were with, for Kathryn, and for the memories we made this weekend. Thank you Paul Burton for letting us play with your GPS toy, and thank you all for praying for us. The past few days were like a gift and we opened them with delight.