Machine Free!

Nicholas had an appointment with his pulmonologist today and he discontinued his apnea monitor! We are so happy he is doing so well with his breathing. I never thought he would be off oxygen and the monitor as fast as he was considering he had such a hard time coming off the ventilator in the NICU. The doctor also decreased his Flow Vent (lung medicine) from twice to once a day. He has to go back in 2 months for a check up and to start his Synagis shots. Synagis helps incase he gets RSV. It doesn't prevent it but it will help him recover faster if he gets sick.

Next week we have our hearing appointment at MUSC. I really hope he sleeps for the test and they can do it. The speech therapist wants to wait until he has hearing aids to work with him now. In her evaluation she had that he is severely delayed in language and the faster we can do something about his hearing the better. Well duh, we know he can't hear and I have been making call after call ever since we were told he can't hear trying to get the process started. Her evaluation made me feel like we aren't being proactive with his hearing and it is our fault he doesn't have hearing aids yet. I hate relying on other people to get things done but what else can I do.

We also have a physical therapy evaluation next week. I guarantee he will get a bad evaluation and we will be told he is really delayed. I'm starting to see that he is delayed with certain milestones he should be doing now. I've been calling about PT ever since he got home and what can I do if it takes 3 months to get a therapist to see him. That is a state program for you. Needless to say, I've been really frustrated the past week. We get these services through a state program and they are soooo slow! I hate seeing him fall behind and we want him to have the best opportunities available.