Monday, June 29, 2009

Upgrades

Our family is in the midst of upgrading computer systems and software, therefore I haven't been on the computer for a few days. Kathryn has managed most of the upgrades for us. She has been transfering files and downloading software while Paul and I have been creating new office space and taking care of other things around the house.

In this time of reprieve from the girls' physical trials, I'm upgrading my home. I have cleaned closets, washed windows, made window treatments, and attended to unfinished projects that I started over two years ago. My "to do" list has several things crossed off of it after this past weekend. And as I was attending to all the things that have had to wait, I was considering how much fun it is to do the simplest things. I have enjoyed every moment I've had to create and remodel. It's my way of celebrating the "normal" days. A completed project gives me something tangible to look at as a remembrance that there are days of rest from our trials. I love observing the girls when they are having good days, and that was certainly true this past weekend. Their smiles and contentment are also a reminder that God is strong and able to do exceeding beyond what we ask.

Finally, I just started a new Bible study and feel as though my very soul is being upgraded. I'm "uploading" scripture for my heart to ponder, and "filing" new data into my heart for the days to come. I believe there are going to be times ahead of us that will require more of us; more faith, more patience, and more perseverance. And I'd like to head into those times with a clean house, a working computer, and a heart full of courage.

Thursday, June 25, 2009

The Days are Just Packed

As with Calvin and Hobbs, the days are just packed with adventures around here. We've had parties, house guests, projects, and more. The days that Kathryn feels good are increasing. Qavah is also doing well. So this is the time for celebrations and getting things accomplished. It has been fun for Qavah to have Nehemiah and Annelise visit this week as well. All the children like to spend time on the swings and when naptime rolls around they all fall asleep very quickly.

Today I have been researching and calling hospitals around the Country looking for more information about bone marrow transplants. I am getting packets of Qavah's records ready to send out to Seattle, New York, and Minnesota, in the hopes that someone will take an interest in Qavah's case. St. Jude's turned us down because Qavah's condition is so unlike the blood disorders and cancers they normally see. However, they did give us some leads on other transplant facilities.

We have been praying about a bone marrow transplant which is something some of her doctors wanted us to think about from the beginning. That is a huge step, and one that requires faith. We know that God has a wonderful plan for Qavah. Now we are looking for every possible means to give her the best medical help. Please join us in praying for the doors to open if a bone marrow transplant will indeed put her disease at rest. We also pray that if that time comes we will all have the faith to walk through those doors.

Saturday, June 20, 2009

Weekend Celebration

The girls have both been feeling well. That is cause for celebration right there! But we are also celebrating Father's Day, my birthday, and Nehemiah's birthday all in one weekend. The sweetness of celebrating these events with the family has made for a joyful weekend.

After dinner last night there were birthday presents to open. I opened one gift to find I had a pedicure and manicure scheduled first thing this morning. Then I opened a gift certificate for one of my favorite antique stores so Paul and I went "antiquing" this afternoon. After an evening walk with my friend Linda I am settling in for the night feeling very blessed. This has been a very special day from beginning to end. I am now another year older. I find that with age comes wisdom and I wouldn't want to give up all I have learned by turning the clock backwards. So this year I plan to view wrinkles and graying hair with more acceptance. I plan to laugh more.

One night last week I emptied out my blue jean pockets before getting ready for bed. I had several dollar bills stuffed in one pocket; change from the grocery store that I had forgotten to put into my purse. So I left the money there until morning. The next morning while showering I heard Qavah fly into the bathroom shouting, "Look Mommy! Look what the tooth fairy left on your dresser!" She was holding a fistful of dollars in awe of what she thought the tooth fairy left for me. While contemplating the acceptance of gray hair and wrinkles I sincerely hope that I will keep my teeth for as long as I need them.


Tuesday, June 16, 2009

New Research

For the past eleven weeks, particularly the week after a transfusion, Qavah has battled lung congestion. Paul Burton has showed me how to hold Qavah and pat her back in the area of her lungs to help her cough up some of the congestion. She has been on two different antibiotics but neither have cleared the congestion. We have been praying fervently for the right help for Qavah and recently believe the Lord has led us to broaden our research on Qavah's health problems.

In our attempt to find help we have come across websites for orphan diseases and rare chomosome diseases. I wrote several emails asking for help from the contact persons and received some information today that could potentially help. I have also found some websites devoted to helping parents cope with the challenges and sorrows of watching their children struggle with a rare disease. All of this information is out there for me on the internet. It is a huge gift to have access to these things. I have drafted a simple email and have listed all of Qavah's chronic symptoms. It is ready to go out to whoever is out there waiting to help someone like Qavah. It only takes one person with the right connections. Please join us in praying for the one.

Wednesday, June 10, 2009

The Best Intentions

Kathryn has had another good day and used her energy wisely. She is going to take tomorrow off work because her company will be having an outdoor picnic. That is probably one of her least favorite things to do in all the world. The bug bites, the bees she can hear and not see, the hot sun on her fair skin, all have led her on more than one occasion to say, "I'm going into the house; this is too much nature for me!"

Qavah had a special guest join her at the hospital for the fun of it. Her friend Emily thought it would be a good idea to come to the hospital sometime to hold Qavah's hand and help her to be brave during her transfusion. Today was the day that worked out for all of us. So Emily positioned herself beside Qavah, the nurse got everything ready, and as soon as Emily saw the blood she was outta there! She went into the next room and her Grammy went after her. Emily declared it was a little too much for her. But the sweetness of God is that He has given Qavah a bravery beyond her years to cope with the frequency of being "stuck" with a needle. And He has given her a dear little friend who loves her with the best intentions.





Tuesday, June 09, 2009

All is Well

Kathryn enjoyed a full day of work and is feeling even better than yesterday. Qavah played with Nehemiah and Annelise this afternoon and I was able to do a lot of laundry. Paul is enjoying Sweden very much. Hearing the sound of his voice via cell phone was better than a morning cup of coffee. Tomorrow Qavah will have a transfusion in the afternoon. While Paul is away taking care of business life goes on. I like it best when life goes on with clean laundry. God has blessed our day.

Monday, June 08, 2009

Back to Work

After a weekend of sleep, Kathryn woke up this morning and got herself ready for work. She just called at 11:15 AM to say that she still has energy and plans to work until the afternoon. Over the weekend, as recovering from the current set back seemed painstakingly slow, we talked about the strength that comes from setting goals and being hopeful even when things don't look promising. By faith she laid out an outfit for work last night. When God has a work for us to do, He supplies our energy and everything else we need to get the job done. We recognize that Kathryn is on her feet today and back to work because the Lord has ordained it. She is happy to keep on the path He has set for her. I am humming the following hymn as I think about Kathryn busy at work today.

“Fear not, I am with thee; O be not dismayed!
For I am thy God, and will still give thee aid;
I'll strengthen thee, help thee, and cause thee to stand,
Upheld by my righteous, omnipotent hand.

Saturday, June 06, 2009

Reaching Home Plate

As I sat down to write tonight I had a mental picture of a baseball game in which a player had rounded the corner from third base racing like the wind toward "home" to score a home run. Maybe growing up in Michigan watching the Detroit Tigers play ball still influences my thoughts at times. But sliding into home plate is how I feel tonight as the sun is setting and the Sabbath Day begins. Our family played a tough game this week, but it ended in victory. You and I were made for worship and fellowship with God and He gave us this day to enjoy Him and to celebrate the victories. It is right and good to acknowledge that the work of the week is done. Rest well.


Jesus I am resting, resting in the Joy of what thou art;
I am finding out the greatness of thy loving heart.
Thou hast bid me gaze upon Thee and Thy beauty fills my soul.
For by Thy transforming power Thou hast made me whole.
~ From the hymn Jesus I am Resting, Resting

Friday, June 05, 2009

Medical Update - Kathryn

I'm going to post a quick update here while Qavah is having her lunch. I plan to take the phone off the hook and sleep along with the girls this afternoon. I took Kathryn to the hospital for another dose of Salumedrol this morning. She is stronger today and I see it in little ways. For instance, I got her dressed and put a little make up on her but today she passed the mirror and looked at herself. That's progress. When I pointed that out to Kathryn she said, "Yeah, I'm such a girl." Humor is another good sign.

While Kathryn has long periods of time when she is unresponsive I miss her. We have so many conversations rich in theology and doctrine. There are times that we share verses with each other that touch our hearts deeply. Sometimes when I don't know how to help Kathryn I feel like I am stumbling around in the darkness looking for some little glimmer of light. I found this verse last night and it taught me about having faith in the dark times. I'll close with a word from God.

Who among you fears the Lord and obeys the voice of his servant? Let him who walks in darkness and has no light trust in the name of the Lord, and rely on his God.
Isaiah 50:10

Thursday, June 04, 2009

Hurdles are made to be Jumped

Kathryn's condition deteriorated during the morning and I took her to the hospital around 1 o'clock. Paul came home from work to help me get her dressed and into the car. It has been a long, tiring day. The problem with diarrhea, a common problem with HPS patients, is that all medications pass through the body without providing the necessary relief of symptoms. While I usually write about Kathryn's "GI issues," I am actually referring to profound diarrhea that leads to bowel bleeding and blood loss. She was not able to stand up or walk on her own today and again I was thanking God for a friend of mine who made it possible to buy a lightweight wheel chair two years ago for times like this.

By the time we arrived at the hospital Kathryn could not answer simple questions and her eyes wouldn't focus. After the nurses consulted Kathryn's doctor it was decided that she should have an adrenal boost by way of a Salumedrol infusion. She was taken to a dark, quiet room and given the medication by IV, then received her Remicade treatment. After several hours, Kathryn perked up a bit and we decided to come home and continue medications at home throughout the night. If her body doesn't adjust on one treatment of Salumedrol we have an open appointment to take her back to the hospital tomorrow.

We are thankful for what this lesson has taught us. In the future we will be asking her primary care doctor to order drugs in the event that we can not reach the specialist when a presciption runs out. Paul is due to leave for Sweden on Monday. I'm thankful that all this is taking place while he has been at home to help. Kathryn has stated confidently that she will be going back to work by Monday. I am joining her in that belief. Kathryn will jump this hurdle by God's grace. She is confident in His power.

Sudden Changes

I just finished reading my last post. Qavah, who seemed so exhausted, went for her blood transfusion on Tuesday and after arriving at the hospital the nurse said, "Qavah doesn't need a transfusion today because her CBC is 10!" I could hardly believe my ears. I'm sure I must have looked stunned because I was speechless for a few moments. I asked the nurse how that could be possible and after discussing it she stated, "Maybe this is the miracle you have been praying for." Qavah's transfusions have been every two weeks. By that time her CBC is between 8-9. This time, because of her rashes and reaction to the last transfusion, we waited an extra week to have her transfused. So she should have been past due for a transfusion; instead she was healthy enough to leave the hospital without it. I have firmly believed that we are going to see a miracle where Qavah is concerned. We continue to pray for it and wait.

Kathryn on the other hand had been doing very well. However one of her doctors was unavailable to write her perscriptions for two of the medications that keep her body stable. She was without them for four days and suddenly yesterday her health took a sharp downward spriral. She is bleeding externally from several places and her body is covered in new bruises. She is unable to work. I will be taking her to her Remicade treatment today and the nurse will be able to document her condition. The pain and GI problems are back with a vengence. If only to see how much relief she is getting from her current meds, this has been a valuable learning experience.

Kathryn was up most of the night with electrolyte problems so I stayed with her. In spite of the demands of her body, and getting up to help her so often, we still had a great time talking about the mighty power of God in the middle of the night. There are some truths from scripture that have come alive for us on this HPS journey. In particular the idea that casting our cares upon Him keeps us free from walking around as though we are shouldering a great burden ourselves. As unbelievable as it seems, there is a lot of joy in this journey. Enjoying a close, continual walk with God and feeling His steady hand of comfort is beyond anything either of us can describe to others.

Monday, June 01, 2009

Quick Update

Qavah is going to the hospital in the morning for her transfusion. She seems tired and I think that has to do with the antibiotics she is taking and many weeks of having a stuffy nose. I have been searching the internet for more clues as to what may be going on with her immune system. I wish I could understand medical language.

Kathryn is doing well. I was able to do quite a bit of sewing for her tonight. She went to bed happy with all the new clothing she now has to choose from that is altered to fit her just right. I think part of the joy Kathryn has in working is preparing her outfits and coordinating jewelry the night before. She's all girl and I love it.