The results are in from Jojo’s metabolic testing. She does not have any form of Mucopolysaccharidosis. Hooray! So what do those perivascular spaces in the corpus callosum mean? If you’ve been following along with us the whole way you know. How about a multiple choice:
- They mean nothing
- They could mean something, or they could not, we don’t know
The correct answer is number 2. So where do we go from here? Well, there are no immediate tests to do. In fact, I think we’ve pretty much covered the spectrum of tests for possible underlying causes. We have a follow up with Jojo’s neurologist in September. And they will want to repeat the MRI in 6 to 12 months, depending on Jojo’s progress between now and then. So her diagnosis of benign hypotonia stands. For now and maybe forever.
I’ve been reflecting on how I feel about this since her doctor called yesterday and shared the results. Normally I’m relieved immediately and then disappointed to still not have an answer, and anxious to find one. That is not how I’m feeling. This time, I knew the results were going to turn out this way. Not in the normal way of assuming things, or feeling pretty sure. I just knew it like I know the earth will keep spinning on its axis and going around the sun. I feel satisfied, like what I knew to be true is confirmed. I know we’ll never find an underlying cause because there isn’t one. How can I be so certain? Does this make me in denial? Irrational? A little crazy? I don’t know, this beautiful little creature is literally part of me. She grew and lived inside me for the first 9 months of her life. We have a mysterious and cosmic bond, same as every other mother and child.
Jojo The Strong 