Qavah's Skin

Qavah has seen four doctors about a skin rash that developed suddenly on Sunday. Her face and eye lids were covered in a rash that did not itch, but as it has progressed the skin has turned hard and leathery. Two doctors have said it is eczema and two have disagreed but don't know what it is. Paul and I have been looking through her medical records and discovered she was treated for the same thing twice before we adopted her. She also had a skin biopsy on her neck where the rash began just after she was born but everything they tested for came back negative. I have been quite concerned about the rash because it caused Qavah's eyes to glue together at night and it took several warm wet wash cloths to get them open in the morning. Pink eye has been ruled out. It appears as though she is having some sort of allergy and her body is overreacting. The doctors we saw didn't really have any advice about treating this, so I am using homeopathic remedies and sterile drops in her eyes. Although this has been stressful for Qavah, she is still smiling and happy. We are very thankful for her joyful spirit.

Tomorrow, Lord willing, we are going to have a visit from Granddaddy and Grandmom. There will be harp lessons, dinner, and music. All of which will be a nice change of pace after all the doctor visits this week.

Qavah's Skin

Qavah has seen four doctors about a skin rash that developed suddenly on Sunday. Her face and eye lids were covered in a rash that did not itch, but as it has progressed the skin has turned hard and leathery. Two doctors have said it is eczema and two have disagreed but don't know what it is. Paul and I have been looking through her medical records and discovered she was treated for the same thing twice before we adopted her. She also had a skin biopsy on her neck where the rash began just after she was born but everything they tested for came back negative. I have been quite concerned about the rash because it caused Qavah's eyes to glue together at night and it took several warm wet wash cloths to get them open in the morning. Pink eye has been ruled out. It appears as though she is having some sort of allergy and her body is overreacting. The doctors we saw didn't really have any advice about treating this, so I am using homeopathic remedies and sterile drops in her eyes. Although this has been stressful for Qavah, she is still smiling and happy. We are very thankful for her joyful spirit.

Tomorrow, Lord willing, we are going to have a visit from Granddaddy and Grandmom. There will be harp lessons, dinner, and music. All of which will be a nice change of pace after all the doctor visits this week.

Rules that Bless

Qavah doesn't read the calendar where we record major family events, so she had no way of knowing why we were putting on our "Sunday best" clothing and putting on perfume Saturday night. We told her that we were going to a very fancy dinner party and that we would want her to behave like a princess. Once I had dressed her, she immediately started working on her curtsy in front of the mirror. We decided as a family that it would be fun to start working on proper etiquette so that we would be more comfortable in social situations. And David and Lizi were just the right friends to teach us those things. They prepared a lovely dinner for us, then proceeded to teach us throughout the evening how to be at ease in a formal dinner setting.

David began our evening by reading a few key paragraphs written by Emily Post that said in essence, "using good manners merely means treating others with dignity and respect." Kindness was the unspoken rule of the evening. Our conversation was uplifting and edified those who listened. Our teachers spoke to us lovingly as they imparted the rules of etiquette. Paul Burton sat beside me and quietly helped me to remember to place my fork at the "four o'clock position" when I finished each course. Being left handed, I kept leaving it at "eight o'clock."

In this picture David is telling my husband, Paul, how his mother took great care to teach him how to be a gentleman. Paul, being the head of our home was the guest of honor for the evening.

Princess Qavah handled the social event well. She sat quietly during dinner and ate the homemade rolls one after another. I'm not sure how polite that was, but she is a little woman who knows what she likes and that counts for something. I think she may be ready for her debut at the White House or the Queen's palace.

Kathryn has the new updated book of etiquette that includes proper cell phone use in public, and writing emails. Using good manners is not out of style. Serving one another is the example Jesus set for us when He, the King of Kings, washed the feet of His beloved disciples.

We all enjoyed our evening and it blessed us tremendously. We rarely get out to church dinners any more, or to social events where the girls may easily pick up a virus. So the elegant and delightful evening with our friends will be something we can talk about for years to come. The memory is as sweet as the apple pie served for dessert.

Finally Friday

I enjoyed reading the responses to the last post where I wrote about Qavah's blanket. It obviously stirred up some cozy memories for some of you who have had the rich blessing of being covered with a deliciously warm blanket right when you needed it most. Kathryn got one of her own today. Her Remicade treatment at the hospital went very smoothly. While snuggling under her blanket and listening to good music on her mp3 player, Kathryn slept the afternoon away.

While Kathryn stayed at the hospital, Qavah and I went shopping. Qavah wore a little apron today with the pockets stuffed with Valentines. She started shopping with sixty Winnie-the-Pooh Valentines and by the time we had finished our shopping she had handed out fifty of them. One woman told her that it was the first Valentine she had gotten for a long time and she was going to show it to her friends. The lady's happiness made Qavah even more determined to give them all out. These two ladies were smiling after receiving their Valentines and Qavah left the store blowing kisses to half a dozen people on the way out.

My friend Helen came to stay for a few days at the beginning of this week. I always enjoy our time together. Helen likes to read and always has something new and interesting to talk about. We visited a beautiful park and enjoyed the spring weather before she headed north. I'm so happy to have a little camera in my purse at all times. I find that photo opportunities come along at least once a day.

A few weeks ago, Paul went to a new eye doctor. Her office is actually inside the Wal-Mart near our home. Her name is Kari Boothe, O.D. When he first stepped into the office she was sanitizing the equipment between patients. Paul thanked her and explained that he has to be careful around germs because of his daughters. She looked at him and said, "You're Kathryn Campbell's Dad! I read your blog every day." She explained that she had heard Kathryn and me speak at Grand Rounds and started reading our blog. There are 51,000 people who have looked at our blog since we started counting them in January of 2007. I sometimes wonder who they all are and so it was a pleasure to meet Kari. She also had a lollipop, paper, and crayons for children in her waiting room. Therefore, Qavah enjoyed the visit, too. With my convenient little camera, I snapped a picture of her with the girls when I ran into her on a recent shopping trip.

I wake up in the morning feeling that every day is a gift. My pictures today are snapshots of special people God brings into my life for a moment or for a lifetime. I used to be out and about several days a week. I taught Bible studies and volunteered for worthy causes. But the girls are my main ministry now and many times we are forced to be at home with health challenges. I have a calligraphy verse on my dresser that I see when I first wake up in the morning that reads, "Your Greatest Ministry Is In Your Own Home And To Your Own Family." That is certainly true for me and helps me value my role as a wife and mother. But when the girls can be out and about, I enjoy watching them as they bless others in the world around them.

Receiving Perfect Gifts

For a year and a half I have been taking Qavah to have transfusions at the hospital. I have a bag packed for her that includes a blanket because she is always cold while she is being transfused. It makes it hard for her to relax when she is shivering. Today I wrapped her in her blanket from home but she was still visibly shaking. The flimsy hospital blanket wasn't much of a comfort so she tried to watch her favorite television shows and think about something else.

Every fifteen minutes a nurse came in to check Qavah's blood pressure. While I was busy over at the sink rinsing Qavah's cup, the nurse came in and a conversation took place between the two of them. The nurse left the room and returned a few minutes later with a blanket that had been warmed in a blanket warmer to one hundred and twenty degrees. The nurse tenderly tucked it around Qavah and told me that the pediatric Hematology/Oncology unit had just been given a blanket warmer. Qavah's face was radiant when the warmth of the blanket started thawing her out. I whipped out my camera to capture her delight.

Lord, did you take a picture of my delight when someone showed compassion to my baby girl today? I thank you with all my heart for the nurse and for the blanket, knowing that every good and perfect gift is from You. Your kindness made my heart sing today. Amen

Priceless

Today a new friend through the HPS community arrived from Michigan. It was great to meet her and her mother in person. Over a year ago Sandy had emailed me while Kathryn was in the hospital and helped me by suggesting drugs that might help. The recommended drugs did work, and it was such a relief to know Sandy was out there with experience in working with doctors and drugs for a rare blood disorder. Her story is similar to Kathryn's. Only she was sick for nineteen years before it was discovered that she had a rare platelet disorder. We talked for seven hours non-stop today. Sandy and her mom Nancy were delightful guests and we have pictures of our day that Kathryn will post on her blog.

At one point this afternoon Sandy and Kathryn were walking amid the wildflowers in the garden on top of Mill Mountain. I took a picture of the two of them smiling together. With the amount of health challenges they have to live with, one might think that smiles would be few, but that was not the case. I have a snapshot of Sandy and Kathryn in my mind, and in that mental snapshot they are strong women who have victoriously overcome many obstacles to stand on top of a mountain smiling today. Sandy is a graduate student at the University of Michigan. She loves math, and to hear her talk about it and see the sparkle in her eye, she has made me consider that math might be fun.

Kathryn and Qavah have had a good weekend. Qavah came in from romping outdoors with her Daddy last night. I looked at her when she came inside for the night and discovered mud and grass all over her clothing along with pine needles in her hair. As I was picking the pine needles out of Qavah's hair I asked her if she had fallen down outside. Her smile broadened, and with a look of pure joy she said, "No, I wolled down the hill and it was willy fun."

Have a great Sabbath day. And if you really want to have some fun, woll down a hill!

The Marvel of Being Made By God

I just finished emailing this video to my children. I sent them a note along with the You Tube website. Kathryn came downstairs just a few seconds ago sniffling, and said, "Mom you have to share this on the blog." So as I am still wiping my tears, please enjoy this wonderful "Reversal of Destiny"

Dear Family,

I thought I would pass along this little You Tube gem. I had my Kleenex and was sobbing at the end. I just went to Bible Study this past Wednesday night and learned about the term "Reversal of Destiny." That term is used as an explanation by theologians. Throughout the entire Bible the stories depict man going one way, and then having an encounter with God that completely changes their destiny.

This video is an example of a reversal of destiny. This woman lives alone in Scotland with her cat, Pebbles. She is 47, has never been kissed, and at the time of this recording was looking for a job. This is a Reversal of Destiny that thrills my heart. What moves me most is knowing that God has done the same thing for our family, and because of Jesus, we all have a "Reversal of Destiny." Enjoy.

Love, Mom

To view this video, click here: Susan Boyle.

Almost There!

We passed around colds last week and we are all coming into the home stretch of getting over them. This cold hit everyone the same way. It began with aching eyes and a raw throat. It ends with a cough. Paul and I reached the coughing stage sometime yesterday so we are almost through all the stages of this cold. It sure makes us more appreciative for the many days of the year that we are not sick. We are also very thankful for Puffs Plus. I am glad to be breathing through both nostrils again and I intend to sleep the whole night. Bliss!

Buds and Blooms

We have been watching spring unfold like someone opening a Christmas gift taking great care not to tear the paper. As blooms unfurl oh so slowly, they are met with sunshine one day, and bitter cold rain the next. Many of the buds are still holding out for truly warm spring weather to show off. We have enjoyed a glorious sunny day today so I walked down to the pond on our property to pick a few daffodils. This was a perfectly beautiful Easter Sunday. I don't want to believe the weather forecast for tomorrow. On this picture perfect day, how am I to believe that tomorrow will be rainy, windy, and very cold for this time of year in the south?

As it is with the circumstances that come along in life, sometimes it is better not to know the forecast or when the rain will fall in our lives. So for today, I am enjoying my family and happy for the peace that fills our home. Whatever rain may fall this week, I have the sunshine of this day to enjoy. Kathryn is much better and so is Qavah. And our Savior has risen indeed. Happy Easter to all.

Waiting on the Lord

I went to church and heard something in my Bible Study class tonight that made me sit up and listen. The teacher was talking about how our strength is renewed when we wait on the Lord. She said, "We exhaust ourselves if we wait for a certain thing to happen, or a certain event to take place, but if we are waiting on the Lord, the scriptures tell us that our strength will be renewed." That is manna for me tonight.

But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

The Weekend

"Qavah, do you know what day it is?" I asked. "Friday!" she exclaimed. And she knows that Friday is the last day of the work week and the fun with Daddy begins. Friday night I posted that my hot date was sound asleep on the sofa but the evening ended well. My date woke up, put on some Sandalwood Cologne and took me to the bookstore where we purchased another favorite book for our bedtime reading. Kathryn did get to babysit and she had everything under control when we arrived home.

Saturday was an outdoor day. We cleaned up the dead brush from winter and mowed the lawn. We also had a happy surprise when a wedding party pulled in and took their wedding pictures on our property. We peeked out the windows as the bride and groom posed in several places around the yard and beside the creek.

Sunday was the best day of all. The balmy temperatures were just right for picture taking. Friends came to visit with a very special basket of fun. Enjoy the pictures. In them I see the goodness of God. I know you will, too.

Friday Night Date Night

This afternoon Kathryn stated that Paul and I needed to go out on a date together tonight. She was very direct and gave us the order. She has been well taken care of for the past ten days and is now able to watch Qavah for us so that we can go out for awhile.

I told Paul when he came in from work about that lovely order from Kathryn, and we began to toss around the possibilities. Let's see, Barnes and Noble for the next bedtime reading book, coffee at a new Bistro in town; the possibilities are endless. So we ate dinner, cleaned the kitchen, played with Qavah, and finally, we are ready to go. There is just one problem. My hot date is sound asleep on the sofa.

Rain, Rain, Rain!

If April showers bring May flowers, The state of Virginia is the place to be in the month of May. It should be beautiful for all the rain we have had lately. It was so dark when the alarm went off this morning that I wanted to pull the covers over my head and pretend it was a vacation day. I could hear a steady rain on the roof as I rolled out of bed.

There is plenty to do in preparation for Passover next week. This is the time of year that I look forward to sitting down around the table with my family while the story of God's redemption plan for man unfolds. There are many things that need to happen before then. But because Jesus the Messiah has come, taking a lamb to the temple to be slain is not one of them. The price has been paid for our sin. It's the season to celebrate freedom for the captives. And we hope to do just that.

Spring Day

We have had enough rain to turn the grass bright green and when the sun is shining the world outside my window looks like it has been color enhanced. We used the swings today. My friend Amy saw us out on the swings and doubled back to my driveway to join us. There was laughter and plenty of sunshine. Kathryn remained in the house and we communicated by telephone.

I am so thankful for the day Kathryn had. Tomorrow she is going to try to use the stairs and prepare her own meals. It is slow going but necessary that she begins to take over her care. I will be at the hospital with Qavah all morning for her transfusion. I am already anticipating that when I come home, Kathryn will be grinning over her accomplishments.

The nurse from the endocrinologist's office called the other day and said that everyone there is astonished that Kathryn is working. She told me that there are many people wanting to be put on permanent disability for the smallest things, and Kathryn puts them all to shame. That is not her goal, but she wants to live a full life, and for now that means being able to enjoy the ability to work. She knows that finding pleasure in her work is a gift from God.

Health Update

Kathryn has posted a health report on her site. Her health has been improving at the Campbell-Home Hospital. The food is better, the nursing care is better, and there is nothing like being in your own bed. If Kathryn can manage to keep still a few more days, she should be able to get around and keep mending without further damage to her rib. There have been things she can work on to keep her mind busy, and that always helps.

I took Qavah for her blood work today and another transfusion has been ordered for Thursday. She is used to the routine. This afternoon at the lab she lifted her sleeve and felt for a vein. When she found one, the nurse let her wipe the area with the alchohol wipe. Once the blood was drawn she picked a Dora the Explorer bandaid and Cinderella stickers to take home to her collection. All of that was done in under five minutes with no fuss. That amazes me every time.

The health reports I've written here do not include how many nights we were awake all night, nor do they focus on the hardships of controlling pain and prednisone levels. But tonight on my "power walk" I poured my heart out to my friend and walking partner. She listened with compassion and we ended our walk as we always do with prayer. Our walks take the edge off of the stress. I am so thankful for Linda. She has to be so flexible but we do manage to work our walks into both of our schedules. Some days I fall into bed dog tired. But when the girls health takes a turn for the better, and they are strong and healthy, my heart rejoices in a way I would never know if it weren't for the days that push me beyond what I think I can give. The strength to keep going comes from the source of life itself. I could not manage without God's amazing grace.

Remembering God's Faithfulness

We have had several good months of fun with Kathryn. We went on a few adventures together as mother and daughter as well as meeting up with friends and going out shopping. All those months in the hospital were so distant in Kathryn's memory that they hardly seemed real. But last night her wings were clipped again as she was turning on her side in bed. She had just fallen asleep when she rolled onto her side and felt a strong pop in her upper right side followed by intense pain. She was able to call Paul Burton on his cell phone and he came running to the house from his apartment to tell us Kathryn was in trouble. After checking on her, Paul Burton was pretty sure last night that Kathryn had cracked or broken another rib. I stayed with her for the rest of the night trying to control her pain, but by morning I knew she had to see her doctor. Her rib is cracked but by God's grace it hasn't broken in two like the last rib. She has no bruising and the doctor said the rib would heal more quickly if it doesn't break.

The tears she shed today over the matter were quiet. I dried them with a napkin at the cancer center while we waited for the doctor and Qavah nibbled on cookies. Dealing with the rib problem means bed rest, and giving up the few freedoms she had begun to enjoy. But as I remember the former days, we have seen great things happen after a setback. This too shall pass and I know that this suffering will again lead to greater victory. Beloved, do not be surprised at the firey trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when His glory is revealed. 1Peter 4:12,13.

The Fourth Child

As Kathryn and I pulled up to the curb of a nearby department store I told her how wonderful she looked and how much fun it was going to be to shop again. We were looking for an Easter dress for Qavah and since we all like ruffles and pink I thought we were all going to enjoy ourselves very much. Kathryn and I looked at the variety of dresses thinking about how Qavah might like them but something in the corner near the dress department drew her attention more than anything else. She was intently finding an ensemble of her own.

We didn't find a dress but bought the bat and ball. After dinner tonight I asked Paul Burton to throw the ball to Qavah a few times so she could swing her bat a time or two. I suggested he pitch the ball to her in the front hall. He looked shocked and said, "Mom, why would I throw the ball in the front hall where the breakable lamps and chandelier are?" I said, "Don't worry about that." He leaned forward in his chair and exclaimed, "Who are you and what have you done with my mother!?" Yes, enough said about child number four; they get away with a lot more.

Monday in March

We have had a good weekend. By Friday, Kathryn had gained ten pounds of water weight and still had difficulty breathing. But slowly her body is recovering from her reaction to aspertame found in her sweetened seltzer water. She said this evening that she feels like getting on the computer again to check in on friends and add a blog entry. That is a good sign.

The tooth fairy made another stop at our house last night. Qavah now has two missing teeth and is enjoying sticking her tongue out through the gap in her lower teeth. She told me that she hoped the tooth fairy would leave her tooth so that she could still play with it. We must have a very understanding tooth fairy because the tooth along with a dollar bill was left under her pillow this morning.

When Qavah and I were waiting for our fight to Florida a few weeks ago, a young boy around six years old was also jumping around smiling with a toothless grin. An older gentleman looked at the boy and asked the boy's mother how much the tooth fairly leaves for a tooth these days and she sheepishly replied, "The last tooth to come out cost the tooth fairy forty dollars." I was so thankful that Qavah has no idea what the words "forty dollars" meant, and she was happy with her "paper dollar" as she calls it.

I am loving being Qavah's mother. This afternoon she curled up in my arms in the rocking chair and I watched her sleep for over an hour. It was so peaceful. We also are reminded daily of the little things that have come into our lives because of having a five-year-old. As we joined hands to pray recently my husband quoted Madeline's mealtime prayer, "We love our bread, we love our butter, but most of all we love each other." Amen!

Blogging Medical History

This hasn't been an easy week for Kathryn. She was feeling bad again and I wasn't sure what to do for her. I picked her up from work early the past two days. Her electrolytes were off balance and she has had headaches for several days. As I was awake with her most of the night on Thursday we prayed and talked until the sun came up. Basically, as we were talking I told her that I was having an uncomfortable feeling in my stomach and the bottoms of my feet felt red hot. She told me that she had been having that problem also. I started thinking about the things we had been eating and drinking and the one thing we had in common was a glass of seltzer water before going to bed. She had gone shopping with her dad while I was in Florida and bought what she thought was going to be a great treat; flavored seltzer water. I went downstairs to the kitchen and read the bottle and discovered that the sweet taste in the seltzer came from Aspartame. Reviewing the facts, Kathryn started with the head ache about the time she started drinking the flavored seltzer water. We looked up the side effects of Aspartame on the internet and discovered that she had most of the symptoms of an allergic reaction to it, including difficulty breathing.

I wanted to blog about this so that I will have some documentation to remember the event. We don't typically use diet drinks, but rather mix fresh fruit juice with plain seltzer water. I'm glad we have had this experience. I'm also glad we figured out what was wrong so that Kathryn can avoid diet drinks made with Aspartame. Kathryn's skin is dotted with petechiae but she has the whole weekend to recover. Her hematologist saw her today and although her red cell count was a little low, her blood work looked fine. Compared to what we have dealt with in the past, this is nothing.

We hope you have a wonderful weekend. Thank you for reading and keeping up with the latest news.

Sunshine

Sunshine is important to me. I need it. The sun broke through the clouds late this afternoon and I gave a shout to Qavah to come to the window with me. She saw the sun and asked to go outside to play. Then I read Kathryn's post tonight and saw that she had the same response with her office co-workers. I couldn't thrive in the places where winter brings months of darkness, like Sweden or Alaska. So the praise in my heart tonight is that I live in the southern United States where sunshine and blue skies illuminate the Blue Ridge Mountains often. Seldom do we have so many days of rain without seeing the sunshine. Both girls are feeling better, and tomorrow's weather is supposed to be sunny all day. As Qavah would say, "Happy, happy, me!"