Today it was completely evident she has RSV. (For the benefit of those who doesn't know, RSV is like a flu that only affect infants and toddlers, and is common in this lovely season. Right now there is an epidemic of it, and since it is very easy to catch it is something that any kid with neuromuscular disease should avoid as it affects the respiratory system with the overload of secretions, obviously... Prescriptions? Time, secretion handling, fever-pain handling... Lovely, huh?).
So... Baby's life was saved, and now should require some hard maintenance at our favorite hospital. People over there were actually happy to see us (yes, something is so wrong in our lives... LOL), as we have managed to stay off hospitalizations for long (apparently something that is not so common). See? Being "difficult parents" pays off in that matter... :) Anyway, we recognized many old faces, met some new, and had our share of fighting to do things Deedee's way. Meaning that we will be in PICU for at least a week, if we are lucky. There is another SMA case in the same PICU that has been there for 3 weeks... please pray for the little boy, he's got RSV with FLU and Pneumonia.
We hope that Deedee can be sent home soon... We rather give her the "special treatment" each 4 hours being zombies at home than have her in an environment where she may catch something else.
Deedee's life is in God's hands, always. We trust HIM to grant what is best for her. We pray she stays with us for a long time, as we believe she has no expiration date. Everything is difficult and hard, but there are so many sweet moments that make it all worth it! Endless life, endless love. May we have strength to carry on.
As a final note, keep Elienid Maisonave in your prayers. She was a friend who finally rests in peace after a long fight of her own. Pray for strength for her parents and family, as her departure was very unexpected. A new star shines bright in the sky, smiling for she now has no pain, no suffering, and just thrives in beauty and love. Elienid, we will not forget you. R.I.P.