She Will Amaze You

I am trying, ever so hard, to be patient with this whole process. Honestly, it is a gut-wrenching experience, but it could be exponentially worse, and I am conscious of that.

Today, I met with Dr. Dee and she would like to wait another few weeks to see if Ellie grows any more, longitudinally, before giving up hope that she can do it. Next week, they are going to repeat the miserable growth hormone stimulation test, to see if the results differ from those in the fall. If they do, if she "fails" the test, then they will be more inclined to start gh therapy sooner, rather than later. If she "passes" again, they will try to hold off until she grows into the new BiPAP mask, on her own, before starting. Then, when she fits the new mask, they will initiate gh therapy, and monitor her (still in hospital...) until they're sure she reacts well, and doesn't suffer from any respiratory complications. Realistically, we are looking at a couple, if not three more months in hospital.

They do not want to trach her. But, if she reacts poorly to the gh therapy, or if she doesn't grow enough before that count down is done, they will.

I'm not sure what I want. All I want is for my family to be whole again. I'm exhausted, and it has only been three weeks. Three short weeks, where Ellie has been missing from our daily household routine. I don't look for her any more, it seems I have adapted to her absence.

On Sunday, we are very grateful to have a photographer from Helping Hearts, coming to photograph Ellie. I am so excited!

You wouldn't believe the progress she is making. She is awake all day, she actively seeks out attention, raises her arms to be picked up, babbles, laughs, smiles, winks. She interacts so much. Physically, her sitting has improved exponentially, she can now easily roll from back to belly (but then she gets stuck), and she can finally bear weight on her legs. She is by no means the same baby that was admitted in December, prior to commencing bipap. She is amazing.

A nurse today, told me that Ellie lights up the room whenever she enters. She really is our shining star.