Hope for Life

The silence here at night is deafening. Once in awhile a child screams out in pain and I am numb to it. There was a time I would have cringed at that sound, my heart would have ached for them. Not now. Now I think 'thank god that child has the strength to scream, the energy is there, they are alive.' Alive...not well, but alive. I took too much for granted, now I need hope for life. Stay strong little man...you are my hero.

Tuesday, August 9, 2011

Almost.........but not quite

finished with this latest admission. Azac and Krystal may get discharged today, we aren't sure yet. The vomiting really isn't under control but no one can figure it out, or why. This is usually the way little mystery mitoman operates, he's not supposed to be able to try to stand, or inch around, because he has no motility, but he does..... He's not supposed to be pink, putting on weight or have ANY energy at all, but he does....... he's not supposed to sing and coo mostly because he's so deaf, but he does almost all day long..... The vomiting is not his kidneys, it's not his gi so the docs are working on the puzzle and hoping for a breakthrough. Us too.

We have done a LOT of work over at Krystal's house, it'll be a different return for her, since her husband packed his bags and left on the 26th, the day before Ayzac turned one. The house is clean, clean, clean with NO laundry and some construction got accomplished and some repaired and one BIG surprise project was completed with the help of my sister and her daughter Emma. The house is just as she's always wanted it for her returns from stays and I'm sure she'll be thrilled. The yard needs work though...........lol

The only "new" news was about Ayzac's kidneys. We know they will eventually fail, leading to dialyses then transplant but we've learned that he actually isn't a candidate for transplant, he's just too sick. So once the kidneys start to go............. Will keep you posted......

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