I do honestly struggle to know where to start. We had an unplanned trip to Cincinnati today. The kids have continued to be extra tired and worn down. They are both through their recovery periods of their surgeries and should be back to base line, but they are not. They have taken some strides back wards.
We saw Genetics today. Some of Joey's muscle biopsy results are back. Right now they are saying that the Mitochondria have significant changes notated in them. This could mean many things, not a set answer right now. However, what they are seeing for sure is that Joey would have some sort of muscle disease similar to muscular dystrophy.. however, every thing is strongly leaning towards more of a mitochondrial deficiency right now. The rest of the results will trickle in over the next two months.
Considering the direction that this appears to be going right now, we are to really take heed to the complaints of tiredness or pain. If they want to stop something, we stop... etc. It's really hard to think we are headed down this path. I am praying that God will change the answers, but as a mommy, I have to deal with the emotions as they come in order not to crack on the day they give us the "official" diagnosis.
They have decided to restart two of the 3 meds in the mitochondrial cocktail. These are supplements that will help with energy and strength. They will be starting on CoQ10 and Riboflavin. We'll give it 30 days to see if we see a change... if not... we'll stop them both.
Also, miss Abby has to see a cardiologist. She's been complaining of her heart beating fast. Today, upon exam they found that her heart is beating faster than it should when she takes a breath.
Over all, we have a lot to work through right now... lots of information put on our plate today....
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