Friday, July 30, 2010

Happy Day

Qavah told the nurse at the clinic today that it was a "happy day." Then she explained, "It is happy because my Daddy comes home from work today and then he will be home for two days!" Yes, the weekend is here. Paul took a long lunch break in order to fix the motor on my washing machine so I could get the laundry done before the weekend. While he was home, we planned some fun things for this weekend. We have a lot of little things around the house in need of repair but we also have little Qavah. She would rather we drop everything to play.

Kathryn continues to improve. Her appointments next week may result in some more medication changes, but for now she is starting to have feeling back in her feet. Her big toe is still numb, but other than that she has been on her feet and working around the house again. I called the National Institutes of Health today to see if there is any way that Kathryn could be seen by the Immunology department. I had a good conversation with one of the nurses there about the problems Kathryn had last week and she is checking to see if there is a doctor there willing to take on this baffling problem. I should hear something from them next week.

In between the medical problems with the girls we are trying to make the most of their good days. Paul and I have enjoyed watching Qavah splash in the small pool we have for her. We enjoy watching Kathryn surf the internet for bargains and then enjoy her excitement when a package arrives for her. We've been sitting together in the evening watching a movie made on the life of John Adams and discussing the events in history. These activities may not sound that exciting to other people, but this is our life and we are so happy. We're about to pop some popcorn and watch part two of our movie. God bless your weekend with His presence and His peace.

Sunday, July 25, 2010

Another Update

Kathryn remains on a higher dose of Hydrocortisone and it seems to be helping the inflammation around her spine. Although she still has some intense tingling in her feet. While the hospital visit straightened around some things, she still feels that there is an explanation for her pain that hasn't been found. I studied some things on the internet about autoimmune diseases that attack nerve endings in certain parts of the body. I plan to do more research tomorrow.

Colin and Jennifer brought their three children here for the weekend to help with Kathryn and Qavah. They stayed the night and went home today. They gave Paul and I the wonderful gift of some time away together. We left Saturday and drove to Lexington for an overnight stay. We shopped in antique stores, went out for dinner, read together, and prayed together. The time away gave us a chance to enjoy each other and laugh about things. We find when we go to an antique store these days we browse the merchandise pointing to various things saying, "I remember that from high school!" How can it be that polyester from the 1970's looks just like it did in the seventies?

When we arrived home today, we were rested. It was the power surge we needed to start off the week with follow up visits to Kathryn's doctors. Paul and I studied scripture together this morning and had some insights that helped us focus on the plan God has for our lives. We are so grateful for the way all of our grown children pulled together this weekend to help each other. They all gave of themselves this weekend and I hope they feel God's pleasure as they start out a new week.

Thursday, July 22, 2010

Medical Updates on the Girls

I want to thank everyone for praying for Kathryn over the last few days. Just before she was wheeled into the endoscopy room I asked her to be prepared for the findings, which are usually normal. We both prepared ourselves for that because it can be very disappointing to feel so sick and not have the diagnostic tests prove anything. However the last procedure of the day today revealed a place in Kathryn's stomach that the doctor thinks was the source of her bleeding last week. With medication and another diagnostic test for ulcer causing bacteria, we should see more of a picture of what is going on by tomorrow.

After three days of testing the findings were neuropathy, abnormal thyroid function, anemia, gastritis, and hiatal hernia. The spinal tests are not back yet. Since all of these things play a part in draining Kathryn's adrenal system, she is on a higher dose of hydrocortisone. I brought her home tonight with a new medication and a list of all her appointments next week with the doctors who had seen her in the hospital.

Qavah's labs results this week were interesting. The Neupogen worked beautifully. Her white cell count came up into the normal range for the first time ever and her activity level came up with it. The doctor commented that she had never seen Qavah so animated. While we were in the pediatrician's office marveling about the white cell count, the nurse came in with the red cell count. It had dramatically dropped. It is a great mystery but Qavah's complete blood count came back 6.7 and a transfusion had to be ordered just 17 days after her last one. Paul told me that Qavah was not quite so brave this morning as her arm was prepared for her IV.

Although it has been a long time since Kathryn was hospitalized, we repeated our routine as soon as she was admitted to the hospital. We called our room "the classroom" and looked at it as an opportunity to be taught more about God's mercy. This hospital stay we had a very long list of people to pray over. We also started a study of Revelation together. Our time was rich and rewarding spiritually and was very much like a retreat. I love those times with Kathryn. Although there were so many things to overcome physically, including lack of sleep, we are stronger spiritually and look forward to seeing answers to our prayers.

Making Progress

The MRI Kathryn had last night showed no evidence of bleeding in her brain.  That was a great relief.  The Endocrinologist talked to her about switching over from prednisone to cortisone to help her body fight this new problem.   Her adrenal system was not able to keep up with the demands of her current illness.  That opened up a great conversation about the possibility of coming off steroids altogether in the future.  It will be hard given the length of time Kathryn has been taking steroids, however her GI doctor recommended the same thing.

Tonight Kathryn had an MRI of her spine.  The neurologist ordered it and he is looking for a reason why she has a loss of feeling in her feet.  She was encouraged by the way all of her doctors began tackling this problem beginning early this morning.   The GI doctor will be putting her to sleep tomorrow morning to take a look at her esophagus and stomach looking for the source of bleeding in her GI tract.  Kathryn is submitting to all the testing in the hopes that there will soon be an answer to the pain she is experiencing from her head to her toes. 

While Kathryn and I stayed at the hospital today, Grammy Helen decided to change her vacation plans in order to stay with Qavah and Gideon.  She has been enjoying her time here in Virginia and I see God's hand in the fact that she was in our home and able to stay on to help us.  We appreciate that so much although she has said it has been wonderful for her as well. Qavah needs a transfusion tomorrow so Paul and Grammy Helen will be at Qavah's hospital taking care of that. 

When Paul brought Qavah to the hospital tonight to visit us, she was wearing a pink summer outfit and her winter boots.  I couldn't help mentioning it because with 90 degree weather it seemed so crazy.  Qavah said, "Mama these aren't my winter boots! I am a pirate today and these are my pirate boots."  I looked across the room to Paul and he just shrugged his shoulders as if to say, "Hey I don't mess with a pirate!" 

Paul and I didn't start out married life with the dream of spreading ourselves so thin.  However we've been called to live a life that is very exciting, and taxing.  There is no one in this world I would rather live this dream with than Paul.  We are a team.  We're looking forward to having this week behind us and settling into our porch swings at sunset with a fresh cup of coffee.

Tuesday, July 20, 2010

Kathryn's Medical update

Kathryn has been admitted to the hospital. We won't be sure of the diagnosis until the x-rays and neurologist figure it out. Last night Kathryn had an excruciating headache. She felt sure she was having some internal bleeding so I gave her a dose of Stimate. She had a fitful sleep; unable to rest her head on the pillow. She developed the mushy skin around her skull problem again and has a pocket of fluid at the base of her skull. Her spine is under pressure and she has no feeling in her feet. She is able to carry on a conversation but has been confused about the day and time today. All of the members of her medical team have been contacted. Her adrenal system is under stress and that could account for her fuzzy thinking.

The last time Kathryn's skin around her skull became mushy she had a sinus infection and for several days had heavy bleeding from her nose. This time is different. It feels to her like her spine is somehow involved. She has settled into her room and the labs were drawn a few minutes ago for bacteria cultures and other diagnostic testing. Although this is all new territory for her she is calm and pain medication is helping with her headache.

We've planned a prayer time for later tonight and have many requests from family and friends to take to the throne of God. Over the past couple of weeks it seems many people we know have been thrust into some difficult situations. They are barely holding on in the midst of their trials. We are in a place of privilege when we can bring those requests before God and plead for His mercy and grace on their behalf. Kathryn has enjoyed many months of hospital free living, and tonight we will be praising God for all the good times we have had. This situation can not steal the joy we have had this past month seeing so many of our family members and friends.

Saturday, July 17, 2010

Living Well

We have had a very busy week. It has been a while since my last post and I am determined to slow down to write. My last guests were still here when another friend called to tell me she would be in Roanoke this weekend. Kathryn and I had a day in between to wash bedding, clean, and prepare for the next guest. While preparing the guest room, I asked Kathryn what the Lord was showing us by filling our guest room every night. She asked, "Mom, remember in the hospital when we felt so alone and missed everyone?" I did remember that. Then she stated, "The Lord is redeeming all of those lonely days; He is redeeming everything." I might have missed it had Kathryn not thought about it. It is true. Kathryn has enjoyed our vacation, and now three weeks of visitors. God has been gracious to us.

This week I learned how to give Qavah her Neupogen injections. I was concerned that she would not receive that well since I often play the role of comforter and nurturer while someone else is sticking her. But she was so interested in the process that she actually worked with me and we were a team as we prepared her skin, the needle, and the Curious George band aid. She pointed to the place on her leg where she wanted the injection and it was over very quickly. I'll be taking her to the hospital Monday morning for a white cell count to see if the shots brought her counts up.

We are preparing for a special event this weekend. Tomorrow we celebrate Qavah's seventh birthday. We can't believe our little girl is growing up so fast. Her legs are growing longer and at times when she is running she reminds me of a little colt. We are working on building her a computer for her very own. This fall she will begin to use it in her homeschooling. However, she asked for princess dress-up clothes for her birthday. While she is growing up quickly she still has the heart of a child who would rather play and pretend than work on her lessons. We're so thankful for her life. We know we spoil her but can't seem to help it. So the computer is not finished in time for her birthday but the princess dress is wrapped and ready.

Friday, July 09, 2010

A Weekend at Last

The girls' health remains stable. They have both had a good week. I have almost forgotten what a normal life is like. This week has flown by while I have caught up with laundry and other household duties. It feels so good to check things off the list. The puppy had his training lesson for the week and I am about to welcome my friend Sara here for the weekend.

Paul and I went out on a date this week. He called from work and asked me to join him for a business dinner. He chose a downtown restaurant called Blue 5. The live music was performed by some local jazz musicians and they were very good. We had a lovely meal, lively conversation, and coffee with dessert while the jazz musicians played until eleven o'clock. The men we were entertaining were from Sweden and Paul had invited some other men from work and their wives. We were a party of ten and as we talked around the table it struck me several times that I was out doing something again with just my husband and no medical issues waiting for us at home. We enjoyed every minute of our time together.

I discovered during the conversation that marriage is not the norm in Sweden. There are very few advantages to being married in Sweden including economic hardship because of taxation, or so I was told. I responded with the statement, "Well, I love being married." Then I was asked, "What do you like about it?" That is hard to say in just one or two sentences but I said, "I love that we made a commitment to each other and I love to match and fold Paul's socks." That met with a burst of laughter and we got off on the subject of laundry.

However, I wasn't finished thinking about why I love being married. Today when I was folding laundry and washing our bedding I thought about it some more. When I fold Paul's socks I think about the miles he walks during his work week and how he has had to soak his feet at times after working hard. He does it for our family. He does it for me. It's humbling to think about, really. I also have to admit there is also a certain thrill when I get to the bottom of the clean laundry and find that every sock had a mate.

My mate is about to drive into the driveway and it is Friday night. Another good reason to be married is being able to spend the weekend with each other. We have a lot of work to do but there will be time for popcorn and movie.

An excellent wife who can find? She is far more precious than jewels. Proverbs 31:10

Tuesday, July 06, 2010

Waiting on God

Tonight Paul and I had our Bible study with friends. We are studying what it means to follow Christ. In one passage from the book of Acts we discovered that after the conversion of Saul (whose name was changed to Paul), three years passed before he began a formal ministry. The Apostle Paul had to wait for the Lord's timing to begin preaching. As we discussed that tonight, Paul asked an interesting question. Have you ever been angry with God because something you have been praying for is taking too long? Each person said that there was something for which they were earnestly praying, and waiting.

So what is the purpose of waiting? Is it to drive us crazy or drive us to our knees? I'd like to think that as we wait, we become more like Jesus; willing to lay down our lives and say, "not my will but yours."

Saturday, July 03, 2010

Celebrating Family

Yesterday our house guests left. Qavah cried when they drove away. There were two straight weeks with cousins and fun things to do. Paul's brother Dave, his wife Carrie and  their children hiked with us to Roaring Run on Thursday. There were so many laughs and good times  that it is easy to understand why Qavah doesn't want it to end. We've enjoyed our vacation to the fullest and now we are celebrating our long Fourth of July weekend. The girls feel so much better. Their treatments have relieved them of their physical troubles and their energy has returned.

There are sheets and towels to be washed, and temporary beds to be put away. So today I will reflect on all the good things we experienced over the last two weeks and thank God for His goodness to our family.