A really late update

This update is long overdue, but we have been busy.  Also, it kind of changes nothing and everything. 

Last month we had two follow up consults for the Hedgehog.  The results of both were the same with follow ups in six and twelve months.  The first was with the neuro-geneticist.  She has been sending us for various tests to see if what Husband and Hedgehog are dealing with are the same neurological issue.  Which... they aren't.  Hard to believe they have many similar challenges, but the root causes are different. 

Hedgehog has some sort of ataxic neurological condition.  Since all the test have been negative thus far, the geneticist has decided to stop testing.  We have no leads, we would be putting him through various test and hoping one would show something.  With so many possible ataxic neurological conditions out there, it would be like poking holes in the dark trying to determine the right test to do.  It is hard to justify putting him through more testing when he is making so many improvements every day.

This appointment left us with two big pieces of information.  The first is that we don't have a diagnosis and we don't know if we ever will.  We are OK with this, but it makes may other things challenging.  The funding for services from medical to school are often based on diagnosis, not needs.  It means we have to advocate harder and predict more in advance what we will be needing.  We are lucky to have some really supportive therapists who are helping on this front. 

The second is that if we choose to have another child the chances of this being a genetic neurological condition are pretty low.  This is the good news, as it means we can stop wondering and just focus on the next twelve months of getting Hedgehog school ready. 

How do we get him school ready?

Weekly speech therapy with the fantastic high energy, lovely woman who is giving him a voice. 

Monthly physio with the patient, calming lovely woman who sees past the screaming and crying at the boy who needs to help to strengthen and lengthen. 

Monthly occupational therapy with the young and energetic lovely woman who is teaching us to be brave when we give Hedgehog a pair of scissors. 

At the end of the day not much has changed, we still have a beautiful, amazing, vibrant three year old, who loves his trucks, diggers and giving hugs.  We just have a less clear road map for the future journey.