Out of Control

What a change a week can make! Poor Zach, we first noticed Monday morning that he has been experiencing several clusters of micro-seizures. They come in waves of about 10-15 at a time, and he has an episode about every 3-6 hours. It has been a long couple of days. We were hoping that just an adjustment in his medication due to his weight gain would solve the problem. He is still having them today, though. Hospice is going to be sending oxygen over to the house, and he most likely will have his levels drawn to see how much of the medication is in his system. Thank you so much for all of your prayers during this time.

Stirring up trouble

Zach is doing so well right now. I feel that we are in a really good rhythm. Right now he is such an easy baby. We actually had a "problem" a few weeks ago that he was gaining too much weight, after months of trying to get him to gain. It was easily fixed with lowering his daily caloric intake. (If it were only so easy to lower my own daily caloric intake!) His skin is doing so much better from the eczema, and his hair is growing in bleach blond! Got to love the Scandinavian blood!

When we decided to enroll Zachary in the Hospice program, part of the services included a Bereavement counselor. When we first met Ms. C, we realized that amazingly enough, she attends the same church that we do! (We go to a large church.) Craig and I have been meeting with her since January about every third week. She has already become a friend in such a short time. (And now we see her at church all the time!) This past week she challenged us to begin planning Zachary's funeral. Besides the practicality of having our wishes written out and connections established with partnering facilities, it would begin to help Craig and I really face what is going to be coming our way. So with a deep breath and a large box of tissues we will begin meeting with funeral homes. Nobody should have to do this for their child, and yet I know that countless parents before me have walked this path. It is not them that is important to me, but who is walking with me. My Almighty Heavenly protector has not failed me yet, and I cling to Him.

Lord, help me not to forget all you've done, especially when things get easy. It is at those that it becomes so easy to forget.

It is not just Him with me during this time. He has also chosen to surround me with so many others. First of all, He has blessed me with a husband who is also clinging to our Savior. The past year has actually brought us closer together, which is a testament to God's faithfulness to us. Second, our parents have also come along side us, supporting us practically through loving on our kids. They are giving us parents a break, so that we can focus on each other now and then. Third, our friends Barb and Mindy are truly part of our family. They serve us as the Lord leads them. Fourthly, I want to thank Sally, Alona, Fred, and Alice. Finally, well, there are so many others that have given of themselves in big and small ways as they walk this path with us...short notes, fix-it jobs around the house, hugs, a painting (see above), prayers, a listening ear, diaper runs, meals, distracting Aaron so that I can actually write this blog! It almost seems silly to try to say thank you. I guess I must trust that God will one day show each and every one of you what your love has meant to us. Thank you.