Jes - posted on 10/22/2010 ( 8 moms have responded )
J and I had a 3 hour appointment today at a clinic. Come to find out he has spasticity in his legs and arms and will eventually need braces. Also that he is clearly not getting enough nutrition or calories with what he's eating right now and there will probably be a feeding tube in the future. I dont even know if i can handle that. That word just makes me sick to my stomach and anxious. Not sure what I truely feel, other then the tears that keep coming close to welling up in my eyes.
I also asked if they could explain to me what his MRI from 6 months ago ment. We gathered from all the notes that theres a partial agenesis of the corpus callosun as well as the thinning of the frontal cortex. The poor kid is already diagnosed with epilepsy and strabismus, why cant they tell us the diagnosis of his severe developmental delay already? Are we waiting for him to somehow magically grow out of it? Am I the only sane one here among all the professionals!!!? This is so nerve racking. We just started early intervention and are in the process of changing insurance so he can get private PT and OT, but I already feel like ive given up my entire life over to endless appointments with no answer in sight.
Sorry Im just frustrated. I keep going over in my head "Why?" why why why why why and as usual, what did i do wrong to deserve this. And why does he deserve this? I know, those are stupid questions, and I already know the logical answer, but they are still there non the less.
I love both my children. I just wish this was a little easier right now.