word from Madison

We heard back from the experts in Madison. Here's what they wrote:


Dr. Pauli does not think Isaac has any form of dwarfism.

In terms of whether Isaac has a syndrome...Dr. Mendelsohn has already done the testing to rule out any identifiable syndrome. That doesn't necessarily rule out the presence of a syndrome as it could be has has "something" that just isn't able to be figured out based on his physical features and testing that is available at this time.

The question about Isaac's head size is a difficult one that seems to be predicated on whether a diagnosis can be generated - without a diagnosis, it is hard to answer. A second neurosurgical opinion sounds reasonable in this situation.

I am sorry that we couldn't help you further as our expertise is in dwarfing disorders - we have officially ruled that out in Isaac.

So he doesn't have a form of dwarfism, he's just a little small (for now). The syndrome question is interesting and not one we give a lot of thought to. The only thing we're concerned about is his brain and the question of a shunt. So we will be pursuing more measurements and information about Isaac's head in the next few months. He is such a happy and smart guy that it's hard for us to believe he needs a shunt. He is going in for a head measurement tomorrow and we hope to see the same number we saw last time - with no sign of growth. If Isaac's head growth slows down in the next couple of months the neurosurgeon will be more confident in leaving his beautiful brain alone. That's what we're hoping for. We have been so blessed in this journey with Isaac. He just keeps passing tests and overcoming obstacles. This is the last piece we have to walk through (for now). Please keep us in your thoughts and prayers as we pursue the best path for keeping Isaac happy and healthy. We love our families and friends and are truly blessed by your encouragement and support.