Saturday, June 19, 2010

Plans For Next Week

Earlier this week I wondered if the fever Qavah had was a sign that we should not travel with her to Cincinnati or take her on the little family vacation we planned following the appointment. However, yesterday in the early morning hours, her fever broke and she has been getting out of bed for longer periods of time. We will be leaving this week as planned. This visit to Cincinnati Children's Hospital is an important one because we have been discussing the options laid out for us by the doctors at NIH.

Qavah's system is overloaded with iron because of the red cell transfusions that keep her alive. She has been using a drug to pull some of the iron out of her system, but it isn't as effective as it needs to be. Therefore her organs have become saturated with iron and are not functioning well. We are going to Cincinnati to try to work out better dosing and scheduling for administering the drug to help regulate her iron. In addition, because of the suggestions of the doctors at NIH, we are going to begin the discussion about a stem cell transplant and the possibility of finding a donor for her. When we were first approached about it, we put it out of our minds because it seemed so drastic. But it seems now that it may be the lifeline to a longer and better life for her.

There are times that Paul and I have fasted and prayed for answers concerning the health and care of the girls. This is another occasion to seek Him with our whole heart. What we have been praying for in this situation is that a perfect donor match will be found. If that is the case we will feel more confident that this is the right thing to do. It has been suggested to us that finding a donor for her with her mixed heritage will be like finding a needle in a haystack. We know that that is not too difficult for our Great God. Above all we want to keep trusting God for the path He is setting before us.

My next post will be from Cincinnati. We have our bases covered here at home and someone to puppy-sit. The insurance matters are settled concerning this trip and Paul is at this minute planning our route. God bless all of you who follow this blog and pray for us. To Aunt Lil, Martha, and Betty, thank you for reassuring us that God is using this blog to bless your walk with Him.