The recent appointments just confirmed that hard times don't last always. I'm so happy for where we are right now. There are some things that we struggle with but they aren't things that can't be solved with a little work. Now my concentration is on what will we do if she is decanulated this year? (trach removed). That means possibly school for Mylah (if she qualifies), I find myself just going through the motions in my head; School???? for a child that was deemed unworthy..WOW…
There are no words to express my true innermost feelings. I am happy and thankful, but there are so many more feelings that I can't describe. I have to remind myself to just take it one day at a time, one thing at a time.
It's a complicated when you have to deprogram yourself and allow new feelings to enter. I have to allow myself to feel ok with losing the ventilator; what was once a life saving device and security blanket is no longer needed. It has provided Mylah with what she needed at the time and it helped her grow and get stronger. Ironically, I am kind of sad to bid it farewell. The day the ventilator is actually removed from our home, will be another significant date added to our journey. I remember being told that Mylah would probably need the support of the vent for the rest of her life. As much as I knew and believed that there would come a time when she wouldn't need it, I relied on it as well. It was my reassurance that she was getting the proper number of breaths her little body needed. As she was weaned, we depended on the pulse oximeter to let us know if she was having a problem (She never did).
Then we started to allow her to sleep like a normal baby. With no machines & no monitors but my nerves were on edge at all times. Sometimes I would enter her room and she would just be too still for my comfort. I would slightly shake her to get the movement that would ease my mind. She would look up at me like I was nuts and slowly drift back off to sleep. Honestly, I still do this "check" on occasion, but I've had to try and talk myself out of thinking the worse and just trusting that she is fine.
Right before Christmas, I made the decision that Mylah deserved to be as normal as possible. She no longer needed to be watched 24/7 so there was no need to keep her in our living room. We made the decision to move her back to her actual room; the room I designed for her before I even knew her, the room the holds her name on the wall, the room she slept in before she left for her heart surgery. Her first night in her room she slept like a baby who missed that room.
I know that GOD has been the writer, producer, and director of all that has happened in our life. There is no other way to explain the things that I've witnessed in the past 2 years. It is because of GOD that my daughter is almost 2 months away from turning 2! It is because of HIM that my daughter has been able to maintain her own breathing for over a month. With each accomplishment, doctors and nurses are so stunned and shocked by her progress, all I can do is say "thank you Lord, you've been good to us" and it's because HE has.