Wednesday, January 30, 2008

Strength for the day

Yesterday Qavah and I were a powerhouse of energy. We did all that driving and visiting with plenty of steam. Today we have been in our pajamas all day because we just wanted to be. We have fallen asleep here and there, and even Kathryn seemed to feel best in bed with the covers pulled up to her nose. I was thankful that we didn't have to rush off anywhere today and had the luxury of staying quietly in the house. As I have spoken with various friends throughout the day I discovered there are many families fighting colds, flu, viruses, and strep. I hope they can take a day off too and just rest.

When I read the prayer request someone left on this post yesterday about a young boy unable to eat, I felt an immediate connection with that family. I want them to know that we are praying. There is sorrow in a mother's heart when her child can not eat. Emotionally it is difficult as day after day they are literally starving and crying for food. I will pray for your strength in these hard times. The days that are pleasant are sometimes few and far between, but the good days are for celebrating and gathering strength. Job said, "man is born unto trouble as the sparks fly upward." I think there are many families that witness a lot of sparks flying these days. For me, to know and believe that I am never alone in the struggle is comfort enough to put out some of those flames.

Tuesday, January 29, 2008

Trip to Charlottesville

Before we even got out of bed this morning Paul prayed for a successful trip to Charlottesville, safety on the road, and that the new doctor would be a good fit. All of those prayers were answered today. Qavah had her little DVD player hooked up and ready to play Cinderella before we even left our driveway. She was such a good little traveler. The weather was clear and perfect for driving. I had a few snacks for Qavah and we stopped at Granddaddy and Grandma's house on the way to and from the doctor's visit to break up the trip. They had lunch for us, and Qavah played with their kitty. We even had tea in Charlottesville with Aunt Jackie and cousins, Heather and David. I wished I had taken the camera for a picture of our very special tea party.

Although traffic in the University district is heavy it is an easy drive. The last few notes of Cinderella's final song were playing when I pulled into the parking structure. We found our way around without getting lost inside the hospital complex, and soon Qavah was meeting her new doctor. He was warm and friendly to her and they chatted and played before he started listening to her heart, etc. She is much more relaxed when a doctor shows interest in her as a person first before beginning the actual physical exam. He glanced through her small mountain of medical records and we talked about possibilities.

What it comes down to is praying for wisdom and then stepping out on faith. We know she cannot go on tolerating blood transfusions once a month. Eventually her body will attack the foreign blood cells. That being the case, this new doctor said, "we have to take the plunge and see what else works!" He ordered several tests that he believes will tell a story about her immune system. He told me that all the results should be in over the next ten days and he will call us with his findings and recommendations. He also agreed that her port should come out. I left a copy of all of Qavah's medical records for him to read, and a list of all her doctors including her surgeon. We wait with hopeful expectation as Cinderella sings, "the dreams that we dare to dream really do come true."

After being away all day, I had the gift of coming home to a delicious meal, a gift from a great cook in our church. I got to sit down and hear about Kathryn's day at the law library with a very dear friend of mine who called Kathryn this morning thinking she might want to "do something" today. I feel completely blessed by all the acts of kindness that came our way today. Kathryn tells me regularly how much she loves my friends. I want to say how much I love them too. I wish I could throw a party one day where you could all meet each other, and you would see for yourselves what I mean. You are the best! God has given us a support network that has been rock solid. He is faithful in every way. Thank you all so much for praying. Together, we all get to watch what God will do for Qavah.

Monday, January 28, 2008

Medical Records

Qavah's medical records and all recent labs are now copied and compiled into a hundred-and-fifty-page packet. We have her records and everything else ready for our trip to UVA including the DVD player and movies from the library to keep Qavah busy. She has been playing house today, and doing all her regular activities even with her lab reports suggesting she should feel like being in bed. It is amazing to see her playing and enjoying life with so little help from her body. Her spirit is very strong and her eyes continue to twinkle.

Kathryn's hamburger kept her awake and miserable for a good part of the night last night. Paul and I talked about that today and came to the conclusion that try as we might to talk her out of eating certain things, the choice is hers at her age, and we can't blame her for wanting to try a hamburger once in awhile just to see if her body can handle it. She found out it couldn't and told us today that she would not have another one any time soon. I read again today about the feast in Revelation 19:9 where the disciple John recorded, Then the angel said to me, "Write: Blessed are those who are invited to the wedding supper of the Lamb!" I know many people reading this blog have sat at the bedside of someone who could no longer eat or drink. While it is hard to witness that on this side of eternity, on the other side there is a feast that all can eat, that all can enjoy, that all are invited to attend. Because of the cross, we can thank God that here and now is not all there is!

Sunday, January 27, 2008

Sunday Night

This is my (Paul) first try at posting on this new site, but Dawn asked me to post an update because she is occupied giving Qavah her bedtime bath. I just walked past the bathroom and heard them both laughing, so bathtime is obviously fun tonight.

This day got off to a difficult start, as so many do, but ended well. Kathryn woke up in pain, frustrated because she wanted to go to church but realizing that her body was not going to cooperate once again. Dawn stayed home with both girls, and was able to get Kathryn stabilized with the judicious administration of potassium, magnesium, calcium, vitamin D, and prednisone. The girls worked on a Bible study in Kathryn's bedroom while I went to church by myself. By the time I got home, Kathryn and Qavah were dressed and ready to go. And go we did. We went to an afternoon concert - the whole family.

Greene Memorial United Methodist Church in downtown Roanoke has a monthly concert series, of mostly classical music. It's something we have enjoyed on many occasions in the past, but today's concert was one we've had marked on the calender for several months. We have been trying to expose Qavah to a variety of musical experiences, because she is so obviously musical. The group we heard today was the Marian Anderson String Quartet, and they gave a lively performance. To quote from the concert flyer: "Named in honor of the legendary American singer, Marian Anderson, this is the first African American ensemble in history to win a classical music competition, The International Cleveland Quartet Competition. Driven by their belief in the power of education, The Marian Anderson String Quartet has performed in hundreds of churches, libraries, museums, soup kitchens, prisons and concert halls across America and Europe." The quartet is composed of four women, two of whom have been part of the group since its founding nearly twenty years ago.

Qavah sat through nearly two hours of music with some apparent enjoyment and without complaint (although she switched from my lap to Paul Burton's lap during the intermission, for variety). She was very good, but I think she was glad when the concert was over. I doubt that many four-year-olds would have done as well.

On the way home, Kathryn started asking us to stop for a hamburger, and Qavah wanted french fries - not at the top of the list of recommended foods for a couple of young ladies with digestive issues. But we gave in, and stopped at the Dairy Queen drive-through. We watched Kathryn enjoy her hamburger, interrupting every few minutes to ask how she was feeling, how it was settling, etc. After she finished, she admitted to feeling some pain, but said she was going upstairs to work on her computer. An hour later, she said she was feeling fine and wanted another one! We got her to admit that it would be better to wait until tomorrow.

As I think about how God has preserved the lives of my girls (including Dawn, who also had a life-threatening childhood disease), I'm feeling especially grateful tonight. He sustains us through everything, sometimes when nothing else is working. I've seen His hand so often, it's not even a surprise anymore when we see it again. But it always inspires gratitude. So I say, "Thank You, Lord, for the joy of this day."

Saturday, January 26, 2008

Saturdaty Night

I haven't written because I've been having fun with the girls. Both are feeling better and had more energy today. We got out and did a few things together. It is such a great blessing to see them having fun and enjoying themselves. We are so grateful for the good days! Thanks be to God.

Thursday, January 24, 2008

By Faith

Qavah was examined this afternoon by the surgeon who will remove her port. Unless she starts running a fever, the date for surgery will be after the appointment with the immunologist in Charlottesville next Tuesday. The surgeon wants to have a better idea about what might happen during recovery if Qavah cannot fight infection. She wants to be able to consult with the immunologist first. I also have to take care of a lot of paperwork over the next few days. Because Qavah is not legally adopted, permission for the surgery needs to be granted by a judge since she is still a ward of the state. I'm sure everyone will do their jobs well, but we will be praying that nothing gets lost or tangled up in the process. After the paperwork is completed, and after the visit to the immunologist, the port will then be removed. Qavah knows exactly what is going on and talks about not having a port anymore the way we would talk excitedly about getting a new vehicle. She has been extra happy all day.

The things I learn from children about trust make me smile. Qavah hasn't wasted a moment of this day in fear. Although we follow her closely and watch for signs of fever, she has been singing, playing, laughing, and cheerful, giving no thought for tomorrow. We rocked in the rocking chair for an hour before bedtime tonight and she didn't mention surgery one time. Instead she sang with her music. I watch her and think about what Jesus said about children. The Kingdom of Heaven will be filled with people who with child-like faith believed and trusted Him. Imagine the singing there will be then! When pressed on every side I'd like to behave like my four-year-old. I want to keep singing through the challenges, having total faith that God is in control. Oh that my faith will grow to be as big as hers!
But Jesus called the children to him and said, "Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Luke 18:16

Wednesday, January 23, 2008

Plans in the works

This morning Qavah's hematologist called and we talked about the problems with the infection Qavah has. By the end of the conversation the conclusion was that the port should be removed very soon. I gave her the name of a pediatric surgeon who came highly recommended to us. Her doctor said she would call him and pull some strings, and she sure did! In less than half an hour I got a call from the surgeon's office with a preliminary appointment for tomorrow. The port will not likely be be taken out tomorrow but the surgery date and time will be scheduled.

I also had confirmation from the State of Louisiana that Qavah's final paperwork is ready to be sent to our lawyer. We found a lawyer nearby that specializes in adoption and understands the workings of the Interstate Compact. This is a very special time for an adoptive family. The official legal documents make everything permanent and binding. That not only gives the child security, it does the same for the adoptive parents.

We have all of Qavah's medical records from earlier years and have read them. She has been neutropenic several times, so her little body has fought this battle before and won. The port she has now is her third one (the first two were replaced due to infection). We are not going to replace the port with another one at this time. We thank you for wanting to be a part of Qavah's life and praying her through this time.

Tuesday, January 22, 2008

Sleepy Day

Both girls have had a quiet day at home. They were low on energy. Qavah has not started to run a temperature so I remain hopeful that the antibiotic will fend off any bacteria looking for a place to grow. Qavah's hematologist will be calling tomorrow to discuss further plans. I also want to mention here that next Tuesday, Lord willing, I will be taking her to the University of Virginia hospital to meet with an immunologist. The appointment was made about a month ago and the time is drawing near to investigate the possible source of Qavah's blood disorder. I expect there will be several tubes of blood drawn. Thankfully she is more relaxed and cheerful during labs having witnessed Kathryn's bravery.

I know the time is coming that Qavah's care will be more labor intensive, but I have thanked God several times a day since we got her that her problems have been minor while Kathryn's were being addressed.

My friend Linda and I have been walking together for over ten years. Our schedules change and we have to make the time to walk. For the past two nights we have walked after dark, but the moon has been bright enough to cast shadows. Bundled in our coats, scarves, and mittens we were able to enjoy the brisk night air and experience the beauty of walking on icy moonlit nights. Our two-and-a-half mile trek seems like nothing when we focus our attention on our conversation and end with prayer. I would not have thought about finding a walking partner because I don't like exercise of any kind. But Linda is a gift from God and that was all His idea. I am thankful for the opportunity to get outdoors, increase my physical endurance, and have a friend to keep me accountable. We've walked 29 miles in the past two weeks in rain, shine, sleet, and snow. Thank you, Linda!

Monday, January 21, 2008

Celebration in the Midst of It All

The celebrating we did yesterday for Colin's belated birthday had a therapeutic effect on all of us. No wonder there are so many commands in the Old Testament to celebrate! It's a good thing to do between warfare, famine, illness, and other negative events that catch us by surprise.

I was taking a nap with Qavah this afternoon and had just gotten into a deep sleep when the hospital called. I had taken Qavah for blood work early this morning because she just didn't look well to me. The nurse from Hematology/Oncology called to tell us that Qavah's situation has changed and her condition could get very serious. She gave me the signs to watch for and they have put her on an immediate admission list if things go wrong during the night. We will be monitoring her temperature carefully. Her total white cell count was four this morning. After further testing it was determined that the particular white cells that fight bacteria are very low in number and she now has a condition called neutropenia, which means if she were to get an overgrowth of bacteria her body could not fight it. She was put on a strong antibiotic tonight but the real culprit is probably that port. We were told it cannot be removed now until her ability to fight bacteria is back. A surgeon has been consulted by Qavah's hematologist, but we haven't spoken to him yet.

Through all of these discoveries today we remain very excited about the future for Qavah. She has often put her hand over her port and said, "Jesus is going to make me better." Even Qavah has associated feeling better with the removal of that port. She listened to us very seriously when we told her how careful we have to be. Hand washing, staying away from the sick, and taking her medicine, are her lines of defense for now. But I would add that we have a mighty God, strong to save. We can boldly approach Him especially during emergencies, and because of what we have seen Him do in the past, we stand on faith that Qavah is in His capable hands.

Sunday, January 20, 2008

Re-birthday party

Paul Burton called Colin's birthday celebration this afternoon the "re-birthday party" because at the last minute last Saturday we had to cancel our celebration plans. This week we had a very nice time celebrating Colin's thirtieth birthday and Jennifer had baked a delicious carrot cake. Kathryn could enjoy the cake, too. Those times that we are able to sit down together are few and far between, but it is always a treat. Annelise has started walking and Qavah was "busy" checking out the new environment, so we still didn't sit down for long. We have been enjoying watching the friendship unfold between Annelise and Qavah. They smile at each other with some secret delight. I am so thankful for the celebration tonight.

This week I will get to work on getting Qavah's port issues straightened around. Her port started giving her problems last August, and has not been usable since October. We know it presents a high risk of infection, and needs to come out before infection takes over or before she is put on immunosuppressants. The timing is good because Kathryn is feeling well and is hoping to get a good start on her final paper this week, which will keep her busy. I will also be calling our social worker this week to get our final adoption paperwork started. It is hard to believe that our six month trial period is over the end of next month. We look forward to the day we have the documents listing us as her "parents." We are eager for that day!

Friday, January 18, 2008

Father's Arms



I got in from a shopping trip this evening and went immediately upstairs to see how the girls were doing. Kathryn was in bed early with a headache so I moved down the hall toward Qavah's room. Her lullaby music was playing. I found her nestled in Paul's arms in the recliner, and both had dozed off. The scene was tranquil. I grabbed the camera and after snapping a few pictures, I found I couldn't take my eyes off them. In Paul's arms is one precious little human being. Her day was filled with pretend adventures of all kinds. She was Nanny McPhee, Princess Qavah and a bus driver today. She played with Annelise, sang songs, played "fetch" with Ellie, and watched a movie. She wore herself out.

The faith and trust she has in Paul has helped Qavah relax and enjoy the privilege of his protection. At the end of the day, there is no finer place than the arms of a father who can be trusted. They are strong, they are sure, and when the heart of that father is pure; they are safe. Thank you Paul for the memory you made for me tonight. It is a perfect picture of how our Heavenly Father has held us so close for the past year and a half while we struggled with fear and frightening situations. We can look back now and see that His arms never failed us. And His arms will never fail our precious children. "The eternal God is our refuge, and underneath are the everlasting arms." Deuteronomy 33:27

Thursday, January 17, 2008

Winter Wonderland

"Pity no! Pity no!" That's Qavah speak for "Pretty snow!" After Qavah ran to every window all morning, it was time to put on the snow suits and go out and have fun. Kathryn joined in. Squeals and giggles could be heard through the closed doors. Daddy's heart had a good workout.






Wednesday, January 16, 2008

Another Good Report

This was another day of blessing. We went to the hematologist today and Kathryn's labs were all good with the exception of the amylase and lipase levels being elevated again. Kathryn had suspected that would be the case because the pain in her left side and back returned during the night. However, today's start of the new medication to thin the bile in the pancreas (Actigall) is fast acting and does not have the side effects of Urso. We are hopeful that Kathryn will be eating again soon, and these pancreatic malfunctions will subside. The Methotrexate is working perfectly, and labs do not show any signs of liver distress. The hematologist was also astonished as he examined her because she is better in so many ways. He remembered her six weeks ago sitting in her wheelchair unable to get up on the exam table. Her legs were covered in band-aids and she was bruised everywhere. This week her skin was clear, the wounds were healed, her abdomen was normal, and she was able to walk, talk, and laugh!

Before we left the office her doctor said, "So the next time an HPS patient with albinism from India walks into my office, I'll start with Methotrexate at the top of the list." Those are one in a million odds, but hey, it happened once! Kathryn hasn't been able to eat for a couple of days, but I think she is going to do very well because she has so much more hope and so little complications to her drugs. We are talking more excitedly every day about her senior project, and this time I really believe she is going to make it.

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no help at all.
Dale Carnegie


Tuesday, January 15, 2008

Tuned In

**Visit Kathryn's Keepsakes to read about her GI appointment**

This post will be brief, but joyful. It was a very good day for Kathryn and Qavah. Their health has improved and both were up, dressed, and cheerfully going about their day by mid-morning. Yesterday I noticed that Qavah didn't want to go down the stairs for breakfast so Paul put her in a laundry basket and carried her down for the fun of it. But then I noticed that she didn't want to move anywhere without being carried and I called the hospital to have her hemoglobin levels checked right away. The 5.8 reading was so astonishing! Her red cells disappeared fast last month! Her doctor called, we talked about the best plan of action, and in the end we decided to have her transfusion last night. She hadn't been eating but halfway through the transfusion she sat up and asked for food. The nurse brought her a box lunch and she ate it like a hungry bear. Since last night there has been such great improvement that Qavah has been going non-stop all day. It's bedtime now, and we have our routine rocking chair time, so I must go. I love that she is small enough to curl up on my lap and rock awhile before bedtime. It is such a great way to end the day. Thank you for praying for her. We are very hopeful that a treatment will be found soon to stop the destruction of her cells.

Monday, January 14, 2008

Monday Night

Update: It is 1:00AM and Qavah is tucked into bed. She's already feeling better. Praise the Lord!

**Kathryn has updated her website. Click on the following words to read her post:
Kathryn's Keepsakes**

Please pray for Qavah, as she is getting her monthly transfusion tonight. Dawn took her to the hospital this morning for a Complete Blood Count. Later in the afternoon, the doctor called back saying that Qavah's blood count was down to 5.8. The doctor recommended Dawn take Qavah to the Pediatric ER, so they could give her a transfusion today; they left the house around 4:00PM. Through a series of unfortunate events, the transfusion didn't start until late this evening. As a result, we don't expect Dawn and Qavah home until about midnight. Fortunately, Qavah is staying busy watching movies. However, please pray for their strength and patience.

Kathryn is doing better than she was earlier today, although her pancreas is giving her trouble again. The pain and constant belching returned over the weekend. Yesterday, she vomited a few times, but has been able to keep food down today. Fortunately, Kathryn already had an appointment scheduled with the G.I. doctor for tomorrow afternoon. Please pray he will have wisdom in treating this chronic pancreas issue.

Monday Night

Update: It is 1:00AM and Qavah is tucked into bed. She's already feeling better. Praise the Lord!

**Kathryn has updated her website. Click on the following words to read her post:
Kathryn's Keepsakes**

Please pray for Qavah, as she is getting her monthly transfusion tonight. Dawn took her to the hospital this morning for a Complete Blood Count. Later in the afternoon, the doctor called back saying that Qavah's blood count was down to 5.8. The doctor recommended Dawn take Qavah to the Pediatric ER, so they could give her a transfusion today; they left the house around 4:00PM. Through a series of unfortunate events, the transfusion didn't start until late this evening. As a result, we don't expect Dawn and Qavah home until about midnight. Fortunately, Qavah is staying busy watching movies. However, please pray for their strength and patience.

Kathryn is doing better than she was earlier today, although her pancreas is giving her trouble again. The pain and constant belching returned over the weekend. Yesterday, she vomited a few times, but has been able to keep food down today. Fortunately, Kathryn already had an appointment scheduled with the G.I. doctor for tomorrow afternoon. Please pray he will have wisdom in treating this chronic pancreas issue.

Saturday, January 12, 2008

Restoration

Kathryn is having some difficulty adjusting to the tapering of her pain medications and since that taxes her adrenal system, her Prednisone and electrolytes need constant monitoring again. Today is off to a very rocky start. The strength that she must have to endure the physical and emotional strain is more than she has on her own. Being tied to pain medication is like running a race with weights on the ankles. She has a research paper to finish and wants her mind back so she's willing to fight for it. Being restored is taking some serious effort, and we are praying her through it.

Speaking of restoration, I had purchased a beat-up mahogany dresser with half the handles broken in June of 2006 just before Kathryn got sick. It was thirty dollars. When I saw it I had an immediate use for it in the lobby of the Blue Ridge Women's Center in Roanoke. I wanted to do something to bless them for all the many ways they help women in our area face an unplanned pregnancy. The wonderful staff helps them understand the blessing of choosing life. Then they go the extra mile to support the women throughout their pregnancy and beyond.

The dresser sat in the barn collecting spiders and dust for eighteen months. I started working on it January first as a New Year's resolution to get it done. I shopped at our local Habitat for Humanity outlet store and found new handles and then got to work. Paul made a new leg for the dresser, and I started sanding, staining and varnishing. Many times I find a piece of junk and fix it up only to have people ask, "How did you KNOW it would turn out like this?" It just takes a certain eye to foresee what the finished product might look like. It usually looks worse before it looks better. Although I don't have a before picture of the dresser, I have a picture of how it changed the look of the space.

As Kathryn walks this valley of restoration, and as you and I also remain a work in the Master's hand I have a warning. Restoration can look pretty ugly and destructive in the middle of the process. Especially when the Master carpenter sands off the rough edges. For those who follow Him, everyday is restoration day. So we can all lift our heads, smile, and say, "I'm not near as good as I'm going to be!" Or as the Apostle Paul said in Philippians 1:6 "...being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus."

Before

After




Thursday, January 10, 2008

Someone out there KNOWS me!

I opened my email account this morning and found I have mail from someone wanting to give me a vacation, help me lose holiday weight, help me make money from home, and improve very personal issues with a drug that begins with a "v". Well, how in the world do they think they know me so well? It is the state of affairs of our human condition, isn't it? We all need to work on the same things and are troubled by our over-indulgences daily. I read on a church sign last week, "May all of this year's problems only last as long as your New Year's resolutions." I would like to think that I could open those emails and find a remedy to quickly fix all the challenges in my life but I know before opening them that their claims are bogus.

Kathryn took her eighth dose of Methotrexate this morning. Her adrenal system takes a hit by early afternoon. I may have to give her more Prednisone, potassium, magnesium, and calcium before the day is over because she is already complaining of the symptoms of adrenal insufficiency. Usually she starts feeling very cold and sleepy. Then her potassium level drops and joint pain begins. By then I know for sure how to handle the dip. I've told her before that her adrenal system is delicately balanced like a cake. All the ingredients have to be measured exactly for the cake to turn out, and the analogy is so true!

Qavah and I signed up for "Story Time" at our local library. I may have had more fun than she did because I love to be read to. Her friend Emily is signed up so they were able to enjoy the time together. I am having such a good time these days. Kathryn's care requirements have lessened, and I find that I am able to focus my attention on unfinished projects, housework, laundry, and playing. All of it is a treat, and I am very grateful to happily care for my family and home. It is a gift.



Wednesday, January 09, 2008

Wordless Wednesday

Below are pictures taken today, showing Kathryn studying and some of her with Qavah. Their day was filled with strength and joy. Praise God from whom all blessings flow.





Monday, January 07, 2008

Back to School

College classes started today and Kathryn is working on her course work for Mass Media Law and Ethics and hopes to have it finished by the end of the week. Then she will have to turn her attention to her final paper and getting in the time for research. We discussed visiting the two libraries of Roanoke College and Hollins University for information and articles, and it is rather thrilling to see Kathryn's interest come alive as she begins to feel better. The last few days have been like a dream. When she is doing well we all relax.

The second part of Kathryn's MRI was taken this afternoon. She already knows there are hairline fractures in her lower spine and is thinking about the courses of treatment offered to her. There is a relatively new drug named Boniva that is given IV, and two of her doctors feel that it is the best one to try. So we'll be researching the side effects of that drug and praying for wisdom. I want to check with the hematologist to determine whether those bone building drugs affect platelet function before we do anything.

The southeast is having a couple of those"bonus days" that I mentioned last winter. The sunshine and warm southern air had people outside today. I was thankful for the taste of spring and for having both girls with me as I drove to the MRI appointment. They were both so beautiful. Qavah has finally started expressing herself freely and when we got home Kathryn said, "Mom, she has been talking for three hours!" But I reminded her that it doesn't matter when it is all such cute stuff. We played her tape of hymns while driving and she has her favorites. One is a song about "The Harvest," and it is an old missions song. The chorus repeats the phrase, "Bringing in the sheaves." Only she must be thinking about how I hang out the laundry on a breezy day and sings, "Bringing in the sheets, Bringing in the sheets; we shall come rejoicing bringing in the sheets." There is another bonus day forecast for tomorrow and I will be rejoicing as I bring in the sheets. I'll praise God again for letting me have one more little one to raise!

Friday, January 04, 2008

Walking by Faith

There are days that I wish I could keep in a box and take them out in the future to look at them again, like the sea shell collection I have from Fort De Soto beach. If I could take today out of a box and turn it in my hand, I would see the handiwork of God all over it. He made a very special day for us.

Kathryn woke up early this morning with strength. She looked radiant. We left the house before the sun was up and drove to the place this morning's seminar was being held. On the drive we watched the sky turn pink as the sun rose. We prayed for the people who would hear a difficult story, and for those in attendance that saw first-hand what Kathryn looked like just a few weeks ago. We prayed they would be blessed to see her standing. The room started filling up with a lot of white coats. Everyone made us feel welcome. Several of the hospital staff commented on our blog and I realized how far-reaching this story has become.

Her doctor began the presentation right on time and passed the microphone to Kathryn to fill in the details. He would introduce an aspect of HPS and allow her to tell the story of how those symptoms impacted her life. The time flew by and soon it was all over. As we were leaving, shaking the hands of many of the attendees, I felt that God had allowed all of us to look carefully at a serious situation and learn something from it. The question and answer time was quite interactive, and when it was all said and done we agreed that it was good seed planted. I hope the fruit that comes out of this morning's session will be sweet and bless doctors and patients alike in the years ahead. There were three people at the seminar this morning that took a personal interest in helping us move Kathryn from Prednisone to Methotrexate. They were our cheerleaders and they were there to see the results. I know they were blessed. The light in their eyes said so. How can we ever thank you enough?

From there we went to Kathryn's Remicade treatment. We were pretty surprised to discover something new. She just took her seventh dose of Methotrexate and it seems to enhance the effectiveness of the Remicade. She has stopped bleeding through her pores and her ears were not inflamed and itching like they had been before every other Remicade treatment. She was hearing well, and had no pain in her inner ear. Also, during the treatment her blood pressure stayed constant and she didn't break out in hives. In the past I had to pre-treat her with Benadryl or she would be scratching for hours. This week, there were no hives. Remicade day was so easy, and Kathryn so relaxed, that she slept through most of it while I wrote "Thank You" notes. It was a marvelous day in every way. When we returned home, little Qavah greeted us with a great deal of delight and I thought about how blessed we are to have her, too. Although it is only seven o'clock Kathryn is in bed for the night. As I think about today and seeing her inner beauty and grace, I am grateful for those of you who walked by faith with us during a long and difficult journey, praying for a day like this one.

"We don't learn to walk by faith until we've learned to walk in the dark."
- Jennifer Rothschild

Wednesday, January 02, 2008

From the Heights

It was early September when things started going very wrong with Kathryn's health. Then the health care team we thought would bring her through it began to treat her with disrespect and even anger as her condition was not changing in spite of their efforts. By October the doctors began to act as though she were not cooperating in her recovery. Once in the middle of the night when scary thoughts happen, she asked, "Mom, could all this be in my head?" I knew how the idea had been planted, and it made me righteously angry. I had to endure watching her vomit after a few bites of food and then have doctors come into her room and bark an order to "just eat!" When we transferred her to another hospital and medical group, the tests proved pancreatitis and an overgrowth of bacteria in the small intestine. Once treatment began I again felt the possibility that the situation would turn around. It has taken a long time, but it is turning around.

What I learned from that experience has been very helpful. Many doctors have a tendency to blame the patient when there is no improvement. And in Kathryn's case, their care stopped and we were curtly told to "find an expert." About ten miles away, another doctor said, "Let's get to work and figure this out." He would not call himself an expert but he doesn't let any grass grow under his feet when it comes to getting down to business and ordering appropriate tests.

This Friday one of Kathryn's physicians will be using her case as a model to help residents better understand the tendency to blame the patient. His role on Friday is teaching doctor-patient communication, and he has his power-point ready. Kathryn knows this is important, and has chosen a no-nonsense outfit to wear for the occasion. Together, I hope they are able to give the group of doctors attending the seminar a lasting impression that will help them when in five, ten, or fifteen years, someone comes to them for help with a rare and difficult-to-treat problem. Kathryn is looking forward to the seminar and I can't help but smile when I think of her enthusiasm for the project.

The Condor in flight over the Andes Mountains is the picture I want to have in mind as Kathryn shares her life and story with strangers. Soar, my darling girl! We know the spirit of the living God is lifting you high above your circumstances to shine for Him and His glory. You are ready, Kathryn, and Daddy and I are so proud of you.