Well here it is May and this makes our 5th trip back to Houston since we got home in February. Dan has severe neuropathy (nerve damage) in his spine, feet and legs and some damage in his arms and hands. We are back doing another round of treatment (IVIG) 9 hours per day 2 days at a time. If this does not show improvement we will be looking at another treatment.
Dr. Jones our stem cell doc would like to do either nerve biopsy or brain biopsy -as Dan is still dealing with cognitive problems and they seem to be getting worst instead of better. Of course the trips here seem to make it worst and he gets more and more confused. So Dr. Jones wants to be able to get to the bottom of this and Dan and I are in agreement that we want to know what is going on in the brain and why it is not healing.
This has been quite a journey we have been on and at this point we just want some answers whether they be good or bad so we can better prepare for the days ahead.
We so appreciate all of the kinds words and thoughts and especially the prayers. We haven't given up hope --we just want to be realistic about what the future holds- Dan and I have had very long talks about this and we are both are the same page so to speak. So we will press on and hope to be able to get a clear diagnosis and also prognosis.
Please keep us and our family in your prayers and know how much we love each and everyone of you.
Praying for you both. Hoping the Dr.'s have more definitive and clear answers for Uncle Dan.
ReplyDeleteWith love to you both,
Bonnie