Learning more about CDG has been informative and scary. I try not to spend too much time researching stuff on the internet as the extreme cases scare me, but make me feel more prepared to handle the challenges that Oliver might face. The mild cases give me hope that maybe our little guy will be one of the lucky few.
In the meantime, while we're waiting for appts, fighting the seizures, learning about the disorder, etc we are trying to also live our lives. Going to work/school. Playing at the park on the weekends. Going out to eat. Taking advantage of the fact that Oliver is still so little and not mobile yet. He's still at the age where he will sleep through a meal at a restaurant while we eat, and Tobin is so much more well behaved than when he was a toddler. It's nice to enjoy these times in between hospital visits and health scares. Hoping the pictures and memories will carry us through the tough times yet to come. Frustration is knowing that your tiny little guy will always face struggles and not being able to do anything to stop that fact. Arming ourselves with the tools to spot difficulties and get services for them is the best we can do for him now. Enjoying him in the meantime. Like bathtime, rocking him to sleep, laughing when he spits his applesauce all over my face during a feeding, giggling when Tobin pushes on Oliver's cheeks and says "smoooshy, smoooshy". They are pretty smooshy, perhaps he gets that from me.
He is such a cute little man. I'm imagining you as an applesauce spittoon and I have to say, it is pretty funny. :)
ReplyDelete