I decided today that even though I told myself I wouldn't use this blog to ramble on about stuff, I needed to vent some frustration.
Yesterday we received a report from Josh's Neurologist in the mail. It was a copy of the report that was sent to Josh's Pediatrician. It didn't have any lab results, just a history, diagnosis and recommendations about Josh. It was basically what was said at his appt a couple weeks ago, but with more medical jargon. Although after reading it (and having help translating it LOL, thanks Mom and Luke!) it had a slightly different tone than we got from the appt. Josh was diagnosed with global developmental delays, which means full body... like every area. He was noted to have a 'unsteady, immature gait for age. He was noted to have delays in speech, language and mild motor impairments, particularly with respect to an immature gait and slightly immature fine motor and gross motor skills.' So that is pretty much what we know and not anything surprising.
The next part of the report is what I am struggling with. He was diagnosed with Microcephaly, which is a small head size basically. But what we didn't know was what that truly means. I think the Neurologist didn't come right out and tell us the nitty gritty because it's not good news. Microcephaly means abnormal smallness of the head in relation to the size of the rest of the body: a congenital condition in which the brain is not fully developed. A congenital condition is something that a person is born with and could be genetic, or could have been caused by some other environmental factor. Which is why he needs to see a genetisist. He also was diagnosed with Brachycephaly which means a short head from front to back. So it's kinda like a double edged sword. The one thing the Neurologist did say was that he will have problems with development. It's not a matter of if, but when. He may not progress in some of his cognitive areas, or he may begin to and then stop at a later time. So we are in the unknown here.
I look at how sweet Josh is and it makes me so sad to think he may not be like this in the future. We will do everything we can to help him, but there is only so much modern medicine can do. I don't know why Scott and I were chosen to have two special needs children, but we were and we will make the best of it. I am going to post a poem that my friend Marian sent me, but was also read at Trevor's graduation from the Northern Utah Autism Program. It pretty much sums up how I feel and hit it right on the nose.
1 week ago