Friday, May 27, 2011

Four Day Weekend

The list of things we need to accomplish this weekend grew to fill a page.  Paul and I are hoping to work together to accomplish our goals, stopping from time to time to enjoy the front porch and iced tea.  Vines and under brush have taken over the yard in the past few years so we have a lot of outdoor work on our list.  

Indoors, Kathryn is feeling better after a Remicade treatment on Tuesday.  Qavah is back up and running after a transfusion yesterday.  The girls have an indoor list of light cleaning jobs.  We are a team, and we appreciate the extra day on this holiday weekend to take care of the things that God has loaned us; especially each other!

As we work on our property in peace and freedom, we will be flying the American flag on the front porch.  We are thankful for the men and women in service to our country and pray for peace, so that they too can come home and sip tea on their front porch.  There are many battles being fought by courageous people across this land and the world. God Bless this Memorial Weekend, as people around our land remember those who died, and those who soldier on.  God Bless America.

Monday, May 23, 2011

Happy Ever After

I was headed home from an appointment with Qavah and noticed that the low tire pressure light was on indicating a problem with my front right tire.  I called Paul and told him my location just in case the tire went completely flat.  Everything seemed fine and I made it home safely and didn't think of the tire again until I had to use the car the next day.  There was so much drag on my car when I pulled out that I thought I had left the emergency brake on.  Suddenly, I remembered the tire.  I got out to check it.  Sure enough, it was as flat as a pancake.  

I called Paul at work in the middle of the day and told him what had happened.  He thought a minute before saying, "Can you go into my shop and fill my air tank..." Panic set in.  I pictured myself trying to fill that tank with the compressor air knowing I am not good with power tools or tanks of any kind.  I gasped and said, "Paul, please don't make me do that."  He laughed and said, "I'll be right home."  "Thanks honey,"  I said with great relief,  "and I will never ask you to cook dinner."  We are both more than willing to stick to the things we do best.  My tire is fixed and Paul had a good hot meal.  Yes, for better or worse, until death do us part; happily ever after. 

Saturday, May 21, 2011

Sundown

At the close of this day, we are very thankful for Qavah's improved health.  Today was the first day she was really interested in food, and while she was chewing very slowly, she reported that her tongue doesn't hurt any more.  I have been using all of the prescribed medications, but it has taken several days for the drugs to work on her mouth ulcers. 

We plan to go to church in the morning, and worship with our friends.  There have been many opportunities to increase our trust in God plan last week.  We have found Him faithful.  We now enter into worship with other believers who put their trust and hope in God.  The world didn't end today as it was predicted.  Now we can put the challenges and silliness of the week into perspective as we sing:

Glory be to the Father
And to the Son
And to the Holy Ghost.
As it was in the beginning
Is now and ever shall be;
World without end,
Amen, Amen.

Tuesday, May 17, 2011

Next Thing

We were home from Cincinnati for just a few hours when Qavah started shaking and developed a fever of 104.7.  I knew it was infection of some sort and she complained of pain at the base of her neck and leg bones.  We spent the remainder of the weekend in and out of the doctor's office and emergency room trying to get the infection under control.  It seemed Qavah was recovering, then this morning she suddenly showed me some new symptoms.  She has developed ulcers all over her tongue that are very painful and she was unable to eat today.  I took her back to the doctor and she is now being treated for a fierce fungal infection which can happen in immune-compromised people.  

The last few days of symptoms have been very difficult to manage.  Qavah's body just doesn't seem to want to fight, so the medications have to do the work, yet they also present problems for her.  This has led me to seek further help for the problems with her immune system, which are keeping her from living a normal life.  We have done our best to keep her away from other sick children, but she seems to pick up everything so easily.  A physician at Duke University has shown interest in this problem with Qavah's faulty immune system.   We are in the early stages of discussion and the test results from Cincinnati will be most helpful as he studies them.  The things I am seeing happen to Qavah are above and beyond what can be handled here in Roanoke, and the doctor I took her to today said as much.    

What is next for Qavah?  Her fever is high again.  Our small group was here tonight and we prayed about this situation.  After praying, we wait.  We'll be waiting to see how God will move on Qavah's behalf.  According to His word, He is able to do exceedingly beyond what we ask or think. 

And to know the love of Christ, which passeth knowledge, that ye might be filled with all the fulness of God. Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us. Ephesians 3:19-20

Friday, May 13, 2011

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.

Tuesday, May 10, 2011

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

Saturday, May 07, 2011

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.

Wednesday, May 04, 2011

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.