We waited a little over an hour for the Dr to come in and say, in less then three minutes, that Lillian is too immature and too delayed to even attempt studying the mouth/speech problems. All along, we have been being told that Lillian's speech is impeded due to her structural problems. Not that I know anything whatsoever, but I'm not sure how he can tell just by looking at her that she is too delayed to try the study. He assured me that he is very experienced in this area, which I have no doubts of, but it just seems like I'm missing something. I am SO disappointed, and that would be an understatement. I feel crushed. He went on to say it could be YEARS before she was up to doing the V&E. He told me there was no reason why she shouldn't be able to speak, so it was her brain development that is the problem. He sees that she is receptively there, but not able to get it out. He told me he didn't want me to be discouraged....um....ok. I just blurted out that I am discouraged. I then proceeded to cry and try not to cry so I could try and make sense of the things he was saying. Which made me feel like a complete idiot. He didn't seem to be at all impressed with the speech report I'd given him. He didn't even read it prior to making his decision. He then went on to tell me that he did these types of surgeries on kids who were 13 and 15 years old. If that didn't just want to make me puke. He also said her tonsils are pretty big and perhaps they should come out and that should not have any bearing on her speech...once again, contradictory to what the ENT has said. Also, we've seen three different doctors in the last month and all of them have had a different opinion on the size of her tonsils. It is mind boggling. Are they big or not? Then I feel like, if not one person can agree on the size of her tonsils, how much of what we are dealing with in the area of her speech is subjective? So, the car ride home again was brutal. Struggling to just accept it, really what other choice so I have? I was smacked in the face, again, with how hard this journey is. What a roller coaster. I felt, again, that overwhelming pressure of thinking how hard it is to bear at times. I remember on her first visit back to the developmental peds clinic, the doctor saying that her life should not bring our lives to a screaming halt. That the world did not revolve around her. Truth be told, when you have a special needs child the exact opposite happens. The dynamics of your family change, your finances change, it affects every single aspect of your life and sometimes, its a hard. Very hard.
My wounds are gaping and hurting right now, so please understand my venting. Sometimes, I just need to. As always, I'm thankful, just hurting. God is good all the time.
**something else I remembered...he also stated her tonsils are big enough, that if he did do more work to her palate, they could cause her airway to obstruct again.