Tuesday, November 13, 2007

Although the wrong seems oft so strong

“Although the wrong seems oft so strong, He is the ruler yet.” That is a line from the hymn, “This is my Father’s world,” one we like to sing often. Especially on the days that turn those words into a statement of faith. Today we tried to get an appointment for Katy to see a specialist. We would ask for prayer about that because no one could see her until late January. Her body is covered in unexplainable bruises, and she has little places on her body that just begin to bleed for no apparent reason. This afternoon she was napping and woke up with her pillow bloody. I looked on the side of her face, and from one tiny pore she had leaked a good bit of blood. This has happened once before, last June, and no one could explain it then either. She has had six little places that have done that in the past few days. The bleeding lasts a long time but when I wipe a cloth over the source of the bleeding it can hardly be seen with the naked eye. It literally looks like she has sprung a leak.

I see what is happening on the outside of her body and wonder about what is going on inside and if it is related to the problems she has with her pancreas. There are so many mysteries. We are finding that there are things like this that happen and there is no expert to call. That is why Paul and I so often find ourselves kneeling at the foot of her bed, begging God to give us wisdom. This has been our first experience with caring for an unusual illness and we have found that very often doctors, through no fault of their own, have no time for something too unusual. We hope and pray that the advancements in research at the NIH will yield many answers for those now living and yet to be born with this syndrome.

  1. Shari Cucci Says:

    Dear Dawn & Katy,
    As set and watch the Living Christmas Tree rehersal and read your blog. I pray that as Christ has so may times perfomed healings and miracles as they practice to perform these miracles Christ did in Bibical times that Katy will be touched with one of miracles. Love, Shari Cucci

  2. Sandy Says:

    As you know, platelet dysfunction can cause all sorts of weird bleeding issues, often slow but steady leaks rather than gushers so they sometimes aren’t emergency bleeds but are surely annoying. I hope someone can put together a treatment plan for Katy for bleeding “events” (as my docs call them) sooner than late January. There certainly are meds that can help — I take two of them (Katy knows this) and I don’t know what I’d do without them. The meds helped re-establish control in a situation that was SO totally out of control in 2002 before I was diagnosed with the platelet issues.

    You all continue to be in my prayers!

  3. Heather Kirkwood Says:

    Just a few thoughts on the “leaks.” When this kind of stuff happens to me I short of have a checklist I think about to try to identify the culprit. Sometimes it helps, and sometimes it doesn’t.
    1. Any recent medication changes?
    2. Are you taking any suppliments, herbal stuff etc? If so, check it with your hemotologist.
    3. Are you eating any type of food a lot more than you typcially would? Since Katy’s been having so much trouble eating, that might not be it. And I don’t know if any doc. would explain this one, but I LOVE fish. In Kansas fish is very expensive and no one else eats anything here unless it goes moo….so fish is a big treat. When I was in China a few years ago for work I was in a coastal area and I was served some type of fish with almost every meal for 10 days. Not only did I start to smell like a fish, but I was covered in bruises, having lots of nosebleeds, etc. Two years ago the grocery had a really, really good special on samon. I went fish crazy and ate samon for dinner every night for a week. Again, the same thing happened. I eat fish at least once a week now, but if I get excessive about it, I’ve noticed this.
    4. Are you having any dry skin issues? As it gets colder and the heat is on more my skin gets dried out. Even the mildest little itching that I don’t even think about scratching can sometimes cause me to bleed, and as you described, sometimes when I clean it off you can’t even see anything there. I use a lot of lotion this time of year.

  4. Lael Moreland Says:

    I pray for wisdom for you all as well. You all are often on my mind, and therefore in my prayers. I thank God for the opportunity I have to pray for you. Every time I lift you up in prayer, I find that it does not stop there, for I am reminded of my lack of prayer in other areas of my life. Though it seems strange to think of it this way…I am realizing that when I take the time to pray for you, I am led into a perfect opportunity to continue to lift up concerns and praises to the Lord that I would not normally take the time for. Praying for your struggles leads me closer to the Lord.
    God is using your family in so many ways! And who are we to understand?
    I pray for a peaceful week for you all, and wisdom.
    Love, Lael

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