Home Early

This has been an amazing day.  I prayed early this morning that God would help Qavah and I get back home sooner than our scheduled flight which would have gotten us home around midnight.  The first thing that happened this morning gave me hope. Qavah's doctor wanted to move her exit interview to ten in the morning rather than late afternoon.  After Qavah's biopsy, and the early appointment with the doctor ended, our taxi driver happened to be at the hospital picking up another family from Virginia, so we were all picked up together and Qavah and I were at the airport before noon.  I began to think it just might be that God was opening some doors.  I prayed for two stand-by flights before I reached the ticket counter.  The attendant told me that there was little hope of us getting on stand-by flights because of the number of graduations in the Roanoke area.  Their earlier flights were full. However, Qavah and I got on not one, but two flights, using stand-by tickets.  Maybe some people would think this was all a string of luck, but not me.  Before take-off, Qavah and I prayed for the people who were supposed to be in our seats.

Qavah has had a deep settle peace in her soul the past few days.  She did everything required of her, including the nearly three hour MRI, without anesthesia.  She laid inside the MRI machine with her arms and legs held tightly.  When the MRI was finished, she came out of the machine, and we discovered that the movie monitor that covered her eyes was digging into her forehead.  As she cried, her ears filled with tears.  While we wiped her face, the nurse praised her for staying still and crying silently, even though she was uncomfortable.  The result of that MRI showed an iron overload in Qavah's liver.  However, her heart is in much better condition with only a minimal amount of saturation.  Many of the tests won't be read for another week or more.  Only prayer and a miraculous gift of patience from God can explain her perseverance. 

I took Qavah out to dinner for waffles last night.  She had been required to fast all day while the tests were run. I rewarded her patience with a meal of her choice. After her waffle dinner, I took her back to the hotel and gave her a hot bath.  She climbed into the bed beside me and said, "Mama, isn't this fun to be here together like a sleep over?"  She is teaching me so much about acceptance with joy.  We did have some laughs, watched some movies, and enjoyed the meals we ate in restaurants.  Tonight after dinner she took out her pretend paper money and coins and set them on the table beside her plate.  She looked at us and explained her actions saying, "This is the tip for Mommy."   While Qavah is learning to tip appropriately from me, I am learning how to live with an attitude of gratitude from her.  I thank God tonight for what I am learning, my home, God's goodness, and answered prayer.

Being Ready

The hundreds of details surrounding a trip to a hospital eats up precious time, but the two girls and I stopped in the middle of the day today and met Paul for lunch.  We had one of Qavah's favorite meals; tacos.  We talked, laughed, and lingered over lunch.  Once at home, I lined up a taxi to pick us up in Cincinnati to take us to our hotel.  Now, we just have to go to the Roanoke Airport tomorrow and take off. All of Qavah's labs and records for the past year are in a file in my backpack, and she will have a backpack of her own.  I'm not taking the stroller, so this is her first trip to carry a bag and walk through the airports.  

The last two days have unfolded in pleasant ways.  We are past the details of getting ready, and now we can rest in being ready.  I am most grateful for all of the prayers that will cover us over the next few days. We pray that our faith will be strengthened as we observe the working of God in Qavah's life.  We are waiting with hope and patience for a miracle.

He performs wonders that cannot be fathomed; miracles that cannot be counted. ~ Job 5:9

Thoughts on Mothers

I want to write a reflection on Mother's Day and have been sitting at my computer staring at the screen.  I was trying to remember when I first started realizing that Motherhood must be a very special calling.  A few minutes ago I recalled a Lawrence Welk special I watched that was dedicated to mothers.  I watched his show as a child on Saturday night and at some point in the program a song was sung using the acrostic about MOTHER beginning with "M is for the million things she gave me."  I thought I might use it in this post and looked it up on the internet to find the rest of the words.  I decided against it when I read, "O is that she's Only growing old."  

I have looked at a few Mother's day cards this year, and found that many of them were written with a sense of humor.  One such card showed a messy room and read, "Without you mother....I would be buried under five-hundred pounds of junk." Another one read:

Mom, I can't imagine life without you!
I'd be eating candy from a stranger, 
Talking with my mouth full,
Waving around sharp objects,
While I sit too close to the TV
In yesterday's underwear.

My mind seems to be full of little bits and pieces of what it is to be a mother.  Maybe because today I've been busy all day being a mother.  I shopped for items to pack for our trip to Cincinnati, and bought food to stock the refrigerator for next week while I am away.  However I do want to slow down now at the close of the day to say Happy Mother's Day to all of the young mothers who will probably not get a chance to sit down tomorrow, and to all the empty nest mothers who may not get through the day without eyes glistening with the tender memories made long ago when their children lived at home.  I especially want to say a special Happy Mother's Day to the all the mothers who spend time on their knees before God for the needs of their children.  How precious that must be in the sight of God.

New Friends

Over the past month, I have received several emails from other parents who have children with rare disorders similar to Qavah's.  It happened as a result of my joining an online group for families experiencing the unknowns of genetic disorders.  We now email back and forth sharing our knowledge and research results. That has led me to think about expanding this blog by offering another email address where anyone can write to me personally.  There are some things parents experience that they would rather share in a private way, and I can certainly understand.  However, even if we add the change, there will still be a "comments" option for those wanting to leave a general message.  Look for changes in the Campbell Family Journal website as our blog continues to evolve.

I have received new communications with complete strangers, yet I find that our common experience binds us together very quickly. I have added several prayer requests to my growing list.  As concerned parents, we are all praying for miraculous discoveries to take place, not only for our children but for other suffering children who are not receiving the best care in other parts of the world where medical treatment is unavailable.  

Sharing our daily life with the readers of this blog has brought us a new dimension to our lives.  As we continue to see our blog counter track visitors of this site, we have begun to see that our "family" is bigger than we thought.  We hope to continue sharing our lives with all of you, and to find out from you how God is working in your lives.  The larger and most difficult life lessons train us to look at our circumstances, commit them to God, and observe how He begins to take our mustard-seed-size faith and increase it.  It is humbling and challenging to step back and watch how He transforms our circumstances  into something that will bring Him the greatest glory.

Details, Details

During the week, while Qavah was recuperating and getting over her cold, I spent time getting the details nailed down for the trip to Cincinnati Children's Hospital. Qavah and I will be leaving Roanoke May 11 and flying to Cincinnati for her appointments.  Although this is a regular yearly check up, I feel a sense of anticipation, hoping that a possible bone marrow donor will be found.  That would at least give us an option, although we would still have to make the big decision.   Prayers prayed for Qavah by some of the mothers we met at NIH Children's Inn last year are coming back to mind.  One of them prayed, "Let them know for sure about this possible transplant, send them two possible donors and not just one!" 

We are considering several places around the yard for Qavah's small garden.  Paul is outdoors today working on our yard, and getting rid of brush and pesky vines.  When a suitable place is found for a garden plot, we will start digging, and Qavah can start planting.  I wonder if she knows how much work is involved in tending a garden.  It will be a good exercise in taking responsibility, and hopefully she will learn the greater life lessons of sowing and reaping.   Planting a garden is a good time to teach her to be careful what we plant.  Good or bad, it all comes back at harvest time in greater quantity. 

We wish you and yours a very restful Sabbath, and I will close with the lyrics of a song I remember from childhood about the laws of sowing and reaping. 

                Bringing in the Sheaves 
           written by Knowles Shaw 1874

Sowing in the morning, sowing seeds of kindness,
Sowing in the noontide and the dewy eve;
Waiting for the harvest, and the time of reaping,
We shall come rejoicing, bringing in the sheaves.

Refrain

Bringing in the sheaves, bringing in the sheaves,
We shall come rejoicing, bringing in the sheaves,
Bringing in the sheaves, bringing in the sheaves,
We shall come rejoicing, bringing in the sheaves,

Sowing in the sunshine, sowing in the shadows,
Fearing neither clouds nor winter’s chilling breeze;
By and by the harvest, and the labor ended,
We shall come rejoicing, bringing in the sheaves.

Refrain

Going forth with weeping, sowing for the Master,
Though the loss sustained our spirit often grieves;
When our weeping’s over, He will bid us welcome,
We shall come rejoicing, bringing in the sheaves.

Refrain

Quiet Days

The past few days I have been waking up thinking about planting flowers and shrubs.  It is an activity that has nothing to do with hospitals, medications, or appointments. Qavah has been asking about planting a garden with tomatoes, and cucumbers. Maybe this is our summer to try something like that.  It has been years since I canned my own tomatoes.  On these quiet days, it seems like anything is possible.  I'm sitting here smiling just thinking about it.

Good Friday

We decided to go to church last night for the Good Friday service.  Qavah wanted to sit on my lap.  I pulled her up close and thought her cheek felt too warm.  She was shivering so Paul went to the car for a blanket. By the end of the service, she was asleep in my arms.  She spent the day in bed with puffy eyes, runny nose, and general misery.  I went to the pharmacy hoping to find something that would work like magic, but only time and rest will cure a cold.  Paul and I have decided to work out a plan to go to Easter services separately. One of us to be at home with Qavah. She won't be wearing her Easter dress, or searching for hidden eggs, but we will read to her the story of Jesus and His resurrection.  She loves to hear us read from the pages of her little blue Bible.

Qavah's illness changes our holiday plans, but does not diminish our joy. Where the spirit of the Lord is, there is fullness of joy.  Wishing you all a joyous Easter with family and friends! To see a work of art depicting the resurrection, click here.  Enjoy

 http://downloads.cbn.com/cbnplayer/cbnPlayer.swf?s=/vod/MW131v2_WS     

Good Friday

We decided to go to church last night for the Good Friday service.  Qavah wanted to sit on my lap.  I pulled her up close and thought her cheek felt too warm.  She was shivering so Paul went to the car for a blanket. By the end of the service, she was asleep in my arms.  She spent the day in bed with puffy eyes, runny nose, and general misery.  I went to the pharmacy hoping to find something that would work like magic, but only time and rest will cure a cold.  Paul and I have decided to work out a plan to go to Easter services separately. One of us to be at home with Qavah. She won't be wearing her Easter dress, or searching for hidden eggs, but we will read to her the story of Jesus and His resurrection.  She loves to hear us read from the pages of her little blue Bible.

Qavah's illness changes our holiday plans, but does not diminish our joy. Where the spirit of the Lord is, there is fullness of joy.  Wishing you all a joyous Easter with family and friends! To see a work of art depicting the resurrection, click here.  Enjoy

 http://downloads.cbn.com/cbnplayer/cbnPlayer.swf?s=/vod/MW131v2_WS     

Passover 2011

I have finished putting away all of the pots and pans.  The refrigerators look empty after several days of preparation.  The roasts have been consumed and the Passover Seder is finished.  The girls were healthy and enjoyed the celebration right along with the rest of the family.  At our home Seder, Qavah asked the question, "Why is this night different from all others?"  She astonished us when she was asked to get up in front of over 200 people last night to check to see if Elijah was at the door.  When the Pastor asked, "Qavah, is Elijah there?"  She boldly stated, "Nope!"  She is gaining confidence, and is willing to step out and try new things.  Her hearing aids are in, and we will be picking them up next week.  We suspect that she is going to blossom like a rose because she will be able to better comprehend what is going on around her.  

I took Kathryn to the doctor this afternoon with what looks like a series of spider bites on her neck.  We were outside Sunday afternoon and she remembers that something was crawling on her neck.  The bite marks are small, but the swelling is painful, and it is keeping her up at night.  I have tried different topical creams, but there is little relief.  She has shivers but no fever.  We laughed about it today with the pharmacist because Kathryn is on so many drugs we hoped the spider died of the toxicity.  

The days are unfolding for us in pleasant ways.  The breezy warm days of spring are here at last, and we are enjoying them one by one.  

Triumphant Entry

This morning, moments before church started, we were asked to walk out of the sanctuary into the outer courtyard with our palm branches.  While standing in the sunshine, we were given instructions to begin singing a simple song of triumph, celebrating our Savior's entry into Jerusalem. We had about twenty visitors from Africa, and as Qavah waved her palm branch and sang, she whispered in my ear, "Mama, there are lots of brown people here today like me!"  Yes, a true picture of what heaven will be like, as we sing our hosanna's to the King of Kings with every nation, tribe, and tongue.

The girls have both been feeling well this weekend.  We have been preparing for Passover, and tomorrow night at sundown we will gather here to celebrate the feast of unleavened bread.  We have been cooking, chopping, dicing, peeling, and getting ready for the Passover at home as well as church.  The number at church has grown to around 224. That's a lot of people to feed.  I'm praying for the next fourty-eight hours to flow smoothly, and that God will grant the girls peace in their bodies so that they can enjoy the feast.

This is such a special time of year.  My lilacs are blooming now.  I have been enjoying the smell of fresh mown lawn, and the flowing shrubs.  Paul would like this time of year better if it weren't tax time.  It's going to be a late night.

The Grace of God

Qavah had her transfusion on Tuesday and immediately felt better.  Kathryn had her Remicade infusion today and she is also feeling much better.  I am so happy for them when their drugs are working and the side effects few.  After leaving the hospital, we shopped today for some of our Passover food items.  We went to Michaels for some crafts.  We just had fun being girls.  We came home with groceries and stocked the cupboards and soon sat down to dinner with Paul.  I can only respond in gratitude to God because these days are filled with His grace.

“We tend to forget that happiness doesn't come as a result of getting something we don't have, but rather of recognizing and appreciating what we do have.” ~ Frederic Keonig

An Overview

I think if I don't post an update I will be getting calls from friends and family to check on things.  We had a new floor laid in our home last week and had to move out over the weekend to give the grout time to dry before walking on the new tile.  We returned home Sunday after church to a transformed kitchen, hall, bathrooms, and foyer.  It was the first big job we have had done on this house that we paid someone else to do.  Paul and I are glad we did, or neither of us would be able to function this week.  

Qavah has been struggling with her health and GI tract.  I took her to the lab for her Monday blood work and discovered that her blood count dropped from 10.1 to 7.1 in one week.  I had asked the lab to do a type and screen for Red Cross because I had a suspicion she was not doing well.  She'll need to have a transfusion this week; most likely tomorrow.

Kathryn had a wonderful weekend and enjoyed going to a bridal shower.  She had found a great gift and could hardly wait to give it to the bride.  It was a pancake mixing bowl filled with a granola pancake mix and blueberry syrup from Maine.  The bride and groom are friends she has known for quite a while.  When I picked her up she was smiling joyfully.  She said the shower was elegant and meaningful.  I was so happy she could go to that and enjoy herself.

Our church is going to celebrate Passover this year.  I am preparing for 208 guests next Tuesday night at the church.  I have been able to order many items on line, and there are many capable and helpful women volunteering their time.  I'm happy to be doing this for my church friends, and also thankful to God that the girls are well enough for me to step out and do something I enjoy.  

Successful Procedure

Qavah displayed bravery and courage today.  Her procedure went well and the biopsy of her GI tract and pancreas function test were done swiftly.  The doctor was able to get all of the things he needed to send to the pathology lab to give him a better picture of what is happening to Qavah, including food sensitivities. She was asleep for about thirty minutes including recovery, and had no trouble waking up.  Her spirit was very calm the whole morning; an answer to prayer.  Her reward was playing with her friends in the afternoon.  

Our upcoming trip to Cincinnati will include more testing and procedures.  It is time to think about setting some new goals for having fun.  I have a few things in mind.   If we let her choose, Qavah would probably say that she just wants to play with Annelise and Nehemiah.  This afternoon she ran around the yard with her "friends" and had a good time being a normal kid.  Your prayers were felt, and so too was the peace that comes from God.

To Bed Early

Today we celebrated the sunshine and went out for lunch after church.  While Paul was enjoying hot sauce on his eggs and rice, he paused to blow his nose stating, "My nose is running!"  "You had better go catch it," I replied.  Not knowing that Qavah had never heard that age-old joke, she nearly fell off of her chair laughing. When she was composed enough to talk again she said, "That was a good one Mama!" Lord willing, we will rise early for Qavah's endoscopy tomorrow.  I hope to be home with her by noon.  We prayed with her about it this evening, and she seems to be taking the news of this procedure quite well.  We told her that a tiny camera will be going down into her tummy to take pictures while she sleeps and when she wakes up we will go home and have some fun. It was a good enough explanation for her.

I was grateful that I was able to speak yesterday and the retreat was a good reminder for me that God's word always goes forth to accomplish its purpose.  I didn't start the worst of my coughing spells until the trip home.  Thankfully I seem to be getting over this cold because I have a very busy week ahead. On Wednesday Qavah will be going to the hearing clinic again.  This time she will be well on her way to having a Cochlear soft band hearing aid.  We know it is going to change the way she takes in the world around her and we can hardly wait!  So many good and perfect gifts are coming down to us from the Father of lights!

Every good and perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning. ~James 1:17

Weekend...Yes!

I have had a cold and cough.  At any other time that would be a nuisance, but tomorrow I am supposed to join some women on a retreat and I am the guest speaker.  I've called Aunt Lil and we prayed this afternoon about my cold and cough.  I am hoping for a quick recovery.  I am willing to trust that I will be better by tomorrow and that I will be able to follow through on this commitment to speak for the time I was scheduled.  The theme of the weekend is Matthew 6:25-34, "Therefore I tell you, do not be anxious about your life, what you will eat, what you will drink, nor about your body what you will wear.  Consider the lilies of the field, how they grow; they neither toil nor spin, yet I tell you not even Solomon in all his glory was not arrayed like one of these."  I will take that advice, two Tylenol, and go to bed early.  I have my clothes laid out, my map, Bible, and notes ready.  I am anxious for nothing.

Leather Slippers

Paul has a pair of leather slippers that are a necessary part of his unwinding at the end of a long day.  Something about sliding his foot into his favorite slippers settles his soul for the night.  The work is over, the day is coming to a close, and his slippers put him in a relaxed frame of mind.  

Sunday afternoon he was examining a hole that has begun to appear on the sole of his left slipper.  He looked anxious as he came to me and asked if I thought the shoe repair in town could fix them.  I had my doubts as I looked at where the hole was located.  Qavah, standing nearby stated, "Or maybe I could go to the store and buy you a new pair and give them to you for your birthday!"  Paul smiled at her, admiring her generosity, and asked, "But where will you get the money?"  To which she replied, "When all my teeth come out I will have lots of money!" Paul turned to me and said in a whisper, "It's pretty sad when your only source of income is the tooth fairy."

Sunday Afternoon Movie

We spent the night on Friday night into Saturday morning with Qavah, who began dry heaving again in forty-five minute intervals.  We gave her the medicine prescribed.  By morning her nausea subsided and she fell asleep.  Saturday morning Kathryn woke up with a very bad sore throat.  Sore throats for a person on two different immuno-suppressants can easily turn into something more serious.  Kathryn is needing more Prednisone to meet the drain on her adrenal system.  She has been staying to her room in the hopes of being able to get over this bug without complications, and without spreading it.

After church today Paul and I each had the same idea.  We wanted to go home, put on our comfy lounge wear, and watch a good movie.  We watched a film called The Lightkeepers.  It is a charming love story, filmed on Cape Cod.  There are many ways to relax through music, books, and movies, but today we felt like watching a movie. There are many needs and prayer concerns for our family and friends, and with the world of late.  I can't help but think God gave us the ability to watch or read lovely stories to help take our minds off the cares of this life at times.  Whether you read a book, watched a movie, visited with family, or just stayed home, we hope you feel refreshed and ready for a new work week.

A Better Day for Qavah

Your prayers are so appreciated!  I have good news to report.  Qavah was able to eat some solid food this morning and seems to be tolerating it well.  She is up on her feet today, and sang songs on the way to the doctor visit this morning.  The little girl we know and love is back.  I called Paul on my cell phone just to let him hear her sing.  Paul came home for lunch today and neither of us could stop smiling.  

Qavah is scheduled for an endoscopy in two weeks so that the GI doctor will know what things look like on the inside.  We have cut out one of her medications that has been known to cause Ileus of the bowel, and we are talking to her doctor in Cincinnati about that.  The medication is necessary, and can not be cut out for long.  We believe this medical issue has been resolved, and we are experiencing the joy of seeing Qavah healed.  We continue to pray for an even greater healing.

Who among the gods is like you, Lord?  Who is like you - majestic in holiness, awesome in glory, working wonders?  Exodus 15:1

Qavah in the house

We brought Qavah home this afternoon after deciding that the medical help we received at the hospital could only take her so far.  Most everyone said, "I wish you felt better," as we were leaving with her.  We have to keep her hydrated but she is still gagging and heaving when she tries to drink.  The nurse told me to bring her back if she doesn't urinate within the next eight hours.  She is sound asleep in her bed at the moment.  The house is quiet.  Here in our quiet home, I believe God is going to do some wonderful things to refresh her body.  Please continue to pray that we will have wisdom to do our best for her. 

Update on Qavah

Qavah had a much better night last night and had just a few episodes of dry heaves, so together we made a decision to pull the NG tube that had been draining her stomach for her.  At first things seemed fine, but after two hours of sipping, she began to have dry heaves again.  She is not able to bring anything up, but the nausea is there with no relief.  She has had a little apple juice, but isn't taking in enough to be able to go home.  The doctors here have been great at pulling up all of her older records and have been discussing their ideas with us.  We are pleased that they want to see Qavah get to a better weight, and while they are giving her medications to help her today, they have also been mentioning different things we can try in the future.

We are very grateful for the prayers on Qavah's behalf.  She is the most patient person in the room at times.  She seems to find a peaceful place inside herself in which to retreat, while the staff considers what to do for her.  I've learned a lot about her on this hospital visit.  She has courage beyond her years. 

Qavah has discovered her bedside call button and has been known to call the nurses' station with various requests.  I thought she was sleeping early this morning when the decision was made to remove her NG tube.  A couple of hours later I was straightening her room and I heard her hit the call button. This was her simple request: "The doctor said I can take the tube out of my nose today, so can you come and do that for me now?"  Immediately, a nurse appeared and I thought about Qavah's courage to ask for what she wanted.  Of course it helps to have an adorable voice, but I thought it was a good lesson for me; "Ye have not because ye ask not!"