I am looking at my notebook now, at the random notes I took while the doctor was talking. I wanted to remember and understand. Through all of this, I want to educate people about Kiran. I know many reading this have read our entire story. I know you are invested in this little boy. I feel it. I feel the prayers, I feel the love, I feel the tears even, sometimes.
She called it his cranial vault, not his cranial cavity. I remembered that wrong. My note says “Brain is all there – doesn’t as fully fill cranial vault as is normal for his age.” Also – “Extremely variable – some make incredible progress – improve in development – will never completely have typical development.”
I know what we have going for us – everyone in Kiran’s friendamily and all of his medical/therapeutic team – is we will never give up on Kiran. He has shown us his path, and we have simply walked alongside him, nudging him in the direction he is showing us. We know that somewhere down the line, his path could change. At this point, his enthusiasm and willingness to work hard on therapeutic tasks, along with the progress he is making – we know he has not reached his capacity. We will forever help him reach his full potential. Forever.
I already understand how we do that may have to change at certain times. Our PT at Childserve, before we even had MRI results (only fears/suspicions of the results), gently told us that at some point, he may plateau. He may tell us that he needs a break from the therapy. He may need to rest. Or he may simply…reach his potential. I am already processing that and preparing myself for it, especially in light of the news we got.
Vision and pituitary gland. I think we are supposed to throw a parade that his pituitary gland is normal and that his vision, though not 20/20, should actually be okay and continue to get better. In light of all the other information, it is hard to strike up the band. But I know pituitary gland absences or abnormalities can cause a lot of problems, and I know some of the other concerns our eye doc had could have potentially meant visual deterioration or loss. So. Perspective. It is good news. His nystagmus (shaky eyes, we see this far less than when he was brand new) and eye-crossing is a cerebellar issue (It is because the cerebellum is small).
The other thing she said, again focused on the hypoplastic (small) cerebellum, is that “Every movement is 10x harder – requires more concentration.” The cerebellum is the part of the brain that controls balance and movement. So many pieces of Kiran’s life and journey falling into place with this piece of information.
We have next steps. I hope for more answers. June 12th, we meet with Kiran’s geneticist. She has a lot more information now, so hopefully she can point us in the right direction to find a diagnosis. This type-A mama could sure use some more concrete answers and expectations. I will say again – we will never limit Kiran; he will show us where he is going – but it would be nice to have a diagnosis to have an idea of where he might be headed. Of what his life trajectory might be.
I do well when I can plan for things.