Tuesday, October 03, 2006

Waiting

I know some of you have been waiting to know what happened this morning with our doctor visit. Katy’s pain is as bad as it was when we took her to the hospital in July thinking her appendix was infected. I couldn’t get her to eat anything before we left home. Dr. Dye listened to her complaints but seemed in a quandary as to how to treat her since the steroids didn’t really do the job. We came home quite discouraged but within an hour I got a call from the NIH telling me that they are scheduled to have a conference call with Dr. Dye this afternoon. Dr. Dye had already called them! After the conference call today, Kevin O’Brien from NIH said he will call us to tell us what to do next.

I can’t even describe the feeling I have when these incredible people in Bethesda call us and help us without ever having met Katy. They’ve never asked to see her insurance card. They’ve never said, “I’m sorry, we cannot serve you unless we have a referral.” We feel blessed beyond belief. We are grateful to Dr. Dye for seeking answers to this mysterious illness.

UPDATE:

I just spoke with the NIH Doctor that was so helpful when Katy was in the hospital. He called and talked to me about several aspects of Katy’s condition as it is today. With that information, we will go tomorrow for some blood work and adjustments on her medications. We will need to pray that Katy will respond to the new medications this week to avoid going back to TPN nutrition. Katy is going into this next bout of GI tract inflamation having gained back all the weight she had lost. She has also had good nutrition from the TPN and by mouth to build her up. She does have some reserves this time.

Comments:
  1. Karen Tillman Says:

    Dear Dawn,

    I am truly saddened by the news of Katy’s setback. Alas another bump in the road. I thought I would share with you a bible verse that I keep posted on my fridge when things seem bleak, and I have kept by my hospital bed in the past. The verse is found in Romans 12: 12. Be joyful in hope, patient in affliction, faithful in prayer. I will be sure to say a special prayer for Katy. I want to thank you for keeping us so well informed of Katy’s progress so that we can all know how to pray. Special blessings to you and the family.
    Love In Him
    Karen Tillman

  2. Sandy Says:

    I haven’t commented for a while but have been keeping up with your updates and definitely keeping you — Katy and family — in my prayers. (I have the platelet disorder associated with HPS and am connected with Heather and the gang, have been to the NIH recently, etc.) The folks at NIH are super, and yes, it is a huge blessing to have access to them without all the strings attached. Take good care and know you have many people lifting you in prayer.

  3. Bob, Amy, Emily, Meredith and Abby Says:

    Thanks for keeping us updated! It really helps us to know exactly how to pray for you all. We love you bunches, Katy! Keep your chin up. The Lord will remain faithful to you! :0)

    Amy (for everyone)

  4. Julie Wensley Says:

    We love you sweet Katy! Dawn and Paul you are amazing towers of strength. Even in the midst of your discouragement you are all such a blessing.

  5. Jennifer Blugerman Says:

    Katy,
    This message is from Matt (I’m taking dictation). . .

    “Dear Katy, we love you and we want to pray for you, and we want to come see you!” Love, Matthew

    From Emma:
    “We love you, and we miss you! I hope you feel better.” Love, Emma

    Katy, we do love you and your whole family! We feel so helpless sometimes and want so much for you to be better! I prayed with Emma and Matthew today that God would allow you to regain your strength and be able to manage this illness so that He would be greater glorified by your witness in this world! We need more soldiers like you, Katy, in the battle so don’t you give up!! You are inspiring hundreds of people with your perseverance, patient submission to the Lord’s will, and your infatiguable joy in the midst of great suffering! Hang on, Katy, and keep fighting!

    Love in Christ,
    -Jennifer

  6. Heather Kirkwood Says:

    I love the new banner! I think I gained a pound every time I even glanced at the other one (licking my lips). I know you all are feeling frustrated, but at least this time you know what you’re dealing with, and that’s half the battle. I think of you all always and pray for you often.

  7. Julie Wensley Says:

    Good Morning Sunshine! I woke up this morning to this song and have just been singing/praying it for you this morning:

    “Put on the garments of praise, for the spirit of heaviness
    Let the oil of gladness flow down from your throne!
    Put on the garments of praise, for the spirit of heaviness
    Your joy is my strength alone, my strength alone!

    Make these broken weary bones rise to dance again
    Wet this dry and thirsty land with a river!
    Lord our eyes are fixed on You and we are waiting,
    For Your garland of grace as we praise Your name!

    Hallelujah, sing hallelujah!
    We give all honor and praise to Your name!
    Hallelujah, sing hallelujah!
    We trade our sorrows for garments of praise!”

    I know your eyes are fixed on Him Katy! I am praying for His “garland of grace” on you today.

    ~Aunt Julie

  8. Paige Patterson Says:

    Katy,
    This is Lisa, Paige’s mom. She has just shared with me the blog link. I will be constantly praying for you. Just remember that God is in control and that He knows what He is doing. I feel confident of this because he has connected you with such great and helpful doctors. It is good for us to take our eyes off of ourselves and to look to better things. This advice was given to me not long ago, just try and sing a happy song. It will put your spirit in the right place.
    Love ya
    Lisa Patterson

  9. Laura Griffith Says:

    You look great in the new header for your blog. I do pray that you can gain norishment on your own without the TPN.

    “Wait on the Lord: be of good courage, and He shall strengthen thine heart…” Psalm 27:14

    Prayfully,
    Laura

  10. Julie Wensley Says:

    Did you hear back from the Dr. today about your blood work?

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