Today Juliana had her PEG switched to a Mic-Key and she had two MRIs (one of her spine and one of her brain).
The spinal MRI will tell us if she has ventriculus terminalis (a normal variant) or syringomyelia (more concerning, would require more follow-up and I'm not sure what else). It will also give us some indication as to what is going on with the curvature in her back. And I guess it will be (hopefully) another confirmation that her sacral dimple doesn't go all the way down to her spinal cord.
The brain MRI may tell us why she has hypotonia. It may also tell us why her eyes aren't quite in sync. It may also give some clue about the spinal issues (or maybe that's vice versa?).
I left the hospital feeling optimistic, but not about the MRI results. I expect abnormalities on both of those. But I am optimistic that I will continue to do the best I can do for my little girl. I am optimistic because her GI health is fairly stable at the moment. I am optimistic because she is not in pain and because she is learning new things, even if it is at a snail's pace most of the time.
It can be hard to retain optimism sometimes. Obviously, there is a lot of sadness when you have a child who is ill or disabled or who has special needs. No one wants those things for their child; no one wants to see their baby work so hard to do things that everyone else takes for granted.
While waiting in the hospital this morning I read an op-ed piece that appeared in today's NY Times, Notes from a Dragon Mom. It's heartbreaking but you need to read it. It certainly gave me a little perspective: I have a very sweet daughter. She does have many health issues and many uphill battles to fight. I don't' know what her future holds and quite frankly I don't think about it. We have an excellent support system, we have good doctors and therapists, everybody is happy and we don't want for any basic needs.
Really, how much more can I ask for?