I tried to be patient. I really did. But when we still hadn't heard back from the neurosurgeon about Ammie's MEG. I called again and left a message that we were highly discouraged and felt that nobody was advocating for my son.
It just irks me that in the time that it has taken to get the MEG scheduled, administered, reviewed, and then share with us a BABY has been conceived and will be born. Is that not ridiculous? And we paid $20,000 for this test back in January. Wait until we have another layer of government to go through. This system has problems!
The nurse called me back and shared with us that they all care and that the pre-surgery consult has already been scheduled for 8/9/10. Uh, that is true because when I was seeing the neurologist on 6/18 I had a strong feeling I better make an appointment for Ammon with the neurosurgeon just in case he forgot about us. I MADE THE APPOINTMENT as a worst case scenerio. So lets say that at the appointment the surgery is given a green light. When can we have it? School starts for all my children on 8/16. Then baby Aaliyah is due to arrive on 8/22. When will this happen? We kept all summer open to have this done. Feels like being in adoption limbo not being able to plan life because you just don't know when the light will turn green.
Right now my husband and I are really leery of having any of Ammon's brain removed if he chances losing any of his language and intellectual functioning. What good is having a seizure free brain if you are unable to communicate with people? Right now he can understand most of what we tell him and he tries hard to express himself. If he loses all that, it would be tragic. He is already developmentally a two year old. We can't take any more of that away from him.
So we disheartendly continue to wait.
