Mylah has been doing pretty good. Her cardiology appointments went good, post Echo looked great, EKG was fine and she will be weaned off meds in early summer. She went for another ventilator clinic appointment this month and they were so happy with her progress that they switched her from Pressure Support vent settings to SIMV (Synchronized Intermittent Mandatory Ventilation- basically she is assuming more of the work to breathe. Mylah's issue was never really her inability to breath, she just needed the pressure of the machine to stint her airway open. They also went down on the breaths per minute (BPM) that the machine gave her from 26-20. Progress, Progress.... In 2 months we will return for what we hope is another wean and praying we can close out 2013 without the ventilator 24/7.
She is scheduled for a EEG in the coming weeks due to some weird occurrences that seem to mimic seizures. I'm praying that she's fine, but we need to get it checked out. Her nurse thinks it may just be some sporadic rapid movements, I hope she's right.
Other than that Mylah has been doing very well, getting bigger and we are working on trying to get her to sit up some on her own.
I can get frustrating because it's not happening as fast as I would like, but I know we will get there. Her 1st birthday is approaching and it's not at a snails pace!!! I'm so excited!!! but always a little nervous as well. We've been through so much this past year and it seems like this milestone is far away but yet so close!
I also can't wait for the weather to break. With the winter we are pretty much at home all the time. With the flu epidemic I just don't feel very comfortable taking her out much. Once it starts to warm up Mylah may need a cell phone just so people can keep up with her! I have many plans for this summer; the zoo, a beach, road trip(s). I think the earlier I plan the better. This is one vent kid who will experience all this world has to offer, I didn't fight for her life to have her sitting inside the walls of our house all year long.
I'm still waiting for Ebony to post the interview that I did with them. Hopefully, it will be up soon! I will keep you posted~