Things have been a little upside down lately. I don't know how to describe it. Erik and I are both feeling the push to ease up a bit with B. Decrease supplements and let him try some foods that showed up on his IgG test. We are awaiting the results of his new food panel. I really hope he's lost some of those sensitivities. Reducing supplements has caused a slight regression and more choreiform movements in B. But, this month has been less stressful for all of us without having to worry about taking them after every meal and in the morning when he wakes up. With the regression, we realize the supplements do play a role in his healing. We will slowly be adding them back in.
What we keep coming back to is this: Where is the line between quality of health and quality of life? With B, it is a tightrope. One step in the wrong direction and we either fall on the side of regression or the side of being stressed out nonstop. In three years, we have yet to find the middle ground.
I'm handing B over to God. I want Him to lead and we will follow. We know we will be moving in another direction with his care. That may mean a new biomedical doctor, or a new method of treatment used in conjunction with the care he receives from Dr. B. I am so thankful for everything Dr. B has done for our son. I truly believe in the biomedical approach. However, at this point, we are not feeling peace about continuing on this path alone. If he regresses with the removal of supplements, how much healing has taken place? I want to get his body to the point that it can make or absorb the very things the supplements provide. Am I being impatient? Every day B tics, every day he stims, every day he melts down is a day his brain is inflamed. That scares me. Is there something Dr. B is missing? Something an extra pair of eyes will uncover? B is not gaining weight again. Every pound he gains, he loses again. I want this addressed. Dr. B has brought B into a better place. For that, I will forever be grateful...but I feel like there's a another step that needs to be taken.
So, if you are reading this, I'm asking that you pray for us. Pray for God's guidance and for us to be alert to His leading. Also, that we will have the funds to do whatever needs to be done. Please pray for B...for healing. Thank you, friends.
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