Lately I have been thinking about support groups. There seems to be a support group for everything. Children with heart problems, autism, epilepsy, etc. There's a support group I belong to for people with children in glasses, called Little Four Eyes. It's been very helpful with Aly's strabismus and given me good advice and other parents to talk to that understand our situation.
Aly had a followup appointment with her PO (Pediatric Opthamologist) and because her glasses are not completely correcting her eye turn, he wants to do surgery. I was not expecting that. I thought we had a lot longer to wait until we went that direction. But her eyes are still working together and she does not have a lazy eye yet, so surgery is probably the best option. If she developed a lazy eye we would have to correct that first and then do surgery, so it seems like surgery is kind of the goal no matter what.
I am not happy about this. I was hoping 2013 would be the year of less time at Primary's, less doctor visits, less intervention. I've been talking to the L4E gang about things and they have been very supportive.
But I wish there was another support group for us, but the problem is I don't know what support group I'm supposed to belong to. There's no "Babies who had seizures and brain swelling that had no apparent cause and spent 10 days in the hospital with assorted maladies and are now mostly fine but have development delays and other issues." I don't really relate to any one group more than others. And it's hard because I feel like I don't have any outlet with that. The only one who understand are me and my family. I don't know what to expect, and I don't know that even if I found a group for this, they would know either. We're kind of on our own here. Aly gets to blaze her own trail, and we get to learn as we go, I guess.
So, we have surgery scheduled for March 14. They will call us the day before to let us know when to go in. I guess they basically do it by age, so the youngest kids go first. I hope she is one of the youngest ones so we have less time to wait. I am worried that the surgery won't go well, that it won't fix her eyes or that she will have a reaction to the anesthesia. She is such a good happy baby and I really hate doing anything to her that will hurt her, but if we can get her eyes corrected, it will help so much in the future. At least that is how I am going to look at it. Wish us luck!
On a happier note, my friend's babies are out of the hospital and home. I am so happy they are doing well and are off their machines and being sweet baby boys. Now, the fun really starts. :)
GO ALY!
