A friend of mine passed away. I hadn't seen her in a few years but her smile, enthusiasm and love for Jesus Christ will not leave my mind. She was the mom to two little boys that she and her husband adopted through the foster care system. May heart aches for them as they face the loss of a parent yet again. Her presence here on earth will be missed dearly...
|Tyler when he was a counselor at Camp Lebanon 2009|
And then our oldest son..is fighting malaria. So far away...
|Sleeping with Daddy|
Our youngest son...we learned today, has been given the wrong dose of medication since April of last year. Almost the whole time he has been with us, he has been given an enormous dose of valium. When he was discharged after a lengthy hospital stay for severe neuroirritability, the doctors prescribed the correct dose of valium for a child his age. It was a new medicine for Isaac and so we picked up the prescription on the way home from the hospital. The pharmacist, filled the prescription incorrectly. Instead of receiving a 1.9 mg dose of valium every 6 hours, he has been receiving 9.5 mg. We were giving 1.9 ml every six hours but the medicine they gave us was a much stronger concentration (5 times the concentration) of the medication. Isaac has been on a dose of Valium that would most likely knock out an adult. My heart aches for him...he must now be weaned from this med. We are going to do that very slowly but it is not going to be easy on him...The reality is that despite it's extremely high dose, the medication did not sedate him at all. He has been happy, flexible and relatively seizure free...of course, he has been...he has been on a med that works great for all these things but is in no way meant to be used in such high doses especially for a child so fragile. As the med gets regulated, we will most likely be adding new drugs to help him with his extreme tone, his irritability and his seizures...it may not be easy.
|Elijah on his Make-A-Wish Trip 2009|
And tomorrow, we meet with the bone marrow transplant team at the University of Minnesota for Elijah. This is something that we knew was in our future when Elijah came into our life. There will be much information to absorb as we talk about the pros and cons of the timing of a transplant for Elijah. If we wait too long and he develops Leukemia, his chances of survival are slim..If we go ahead and do the transplant before he develops MDS (a precurser to leukemia in which he is already showing subtle signs of), we could run the risk of doing a risky transplant on a child that may never develop MDS or leukemia (although unlikely.) There is so much to consider and tomorrow will be our time to hear with the transplant team thinks is the best course of treatment. This is all in the planning stages and we will have time to consider all options after the meeting tomorrow. But, the meeting makes the severity of Elijah disease become very real to us again.
Whether our children are thousands of miles away or cradled securely in our arms, the reality is we can't protect them. As much as we wish to protect our children from the hurts, both physical and emotional, the mistakes they will make, or even their death.. sometimes we just can't...because it is not up to us. People make mistakes...the pharmacist made a mistake...the doctors and nurses that saw Isaac in the last 10 months made a mistake when they didn't catch the error. We made a mistake in not probing when one doctor mentioned that the dose seemed really high. In life, we must trust professionals...but my faith is not in them. My faith is in the One sees the whole picture, who knows the "whys" behind the mistakes. We may never know why these things have happened, but we will trust that God knows what he is doing and he does not make mistakes. Perhaps this dose of medicine for Isaac protected him from what may have happened if the error had not been made. God knows the future for each of our children and I will put my faith in Him and his will...even though my heart aches for what may lie ahead for my little ones. I am hurting ..undeniably. But I will surrender the worry, the fear, the guilt. God has been so faithful in teaching me...reminding me...protecting me. The week began with a gift ...He has given me the Lord's prayer as I have never seen it before and that is sustaining my focus on Him through it all. I am at peace despite my hurting heart...and I would appreciate and treasure your prayers this week.