Down, but not out.

Yes, changed the blog again - new year, new layout.

One of our regular readers said to me in December after Cameron got the cast "It's like you jinx yourself with a good post" - and here again it has happened. Maybe I should stop blogging? But I can't, if for no one else but myself!

So we are down, Mom in particular right now. Cameron would be too if he had any idea what was headed his way. We saw Dr. Bowman (Nuerosurgeon) last week to follow up on the recent MR of his ventricles. Good news, ventricles are stable. Bad news, there are other signs of a potential problem. It's a lot of information to get into, so I'm just leaving it at "signs". It's exhausting to try and explain it all, if I did explain it you'd probably just look at me funny or wish you'd never asked for the details.

So, what are we going to do about this POTENTIAL problem - MRI of brain and spine (with sedation), CMG (the very nasty and cruel bladder test), Muscle test and then see 4 different doctors to get everyone's opinion once all tests are complete. It's going to take a few weeks to fit it all of this in, and Clinic is overloaded right now with many doctors out in March so not until April 7th when we see Dr. Bowman and Dr. Yerkes will we have a final verdict.

Potential problems the tests will confirm or deny:
- shunt issue
- CSF in the spinal canal (this is known as Syringomelia) for those of you intimately familiar with our life this is what our crazy dog Miller suffers from, it's a nightmare and I pray, pray, pray this is not what we are dealing with, from about a year into Cameron's life this was one of my biggest fears.
- retethering of the spinal cord (highly unlikely)
- or nothing at all clinical, but tone and muscle related

Obviously we are all hoping for the last option. Putting Cameron through all of this is going to be very difficult, he is more aware of what is going on now. Even the short MR of his ventricles last week was tearful and scary. It's very hard to watch him in these situations. The waiting till April for answers is going to drive me nuts, but I have come to accept the reality of this waiting game and am grateful it's not an emergent situation.

After spending 3 hours at the nuerosurgeon's clinic last Thursday I was Down and OUT. But am happy to report I am back in the game, after all I have no choice, right?

There is so much going on right now as we prepare for the transition from Early Intervention to the school district and to add this to the mix - UGH!!!!!

Why is the transition so difficult? Cameron loses all of his therapies when he turns 3 and his "services" are handed over to the school district. This process is very complicated and filled with many fears and emotions. Trying to navigate it all and learn all of our rights to be sure we are advocating for Cameron is a huge undertaking. Information is not exactly "forthcoming" on all fronts.

In between all of this I am fighting with insurance companies and hosptials over bills and such.

Cameron is doing well despite all of this, as I said he really has no idea and I am grateful he is not in any pain. That is a huge blessing, one we do not overlook.