I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
Wednesday, January 9, 2013
Day 32 as a guest of this hospital
Slow but steady heals the pancreas, and hopefully the heart. Yesterday Daniel had music therapy, and I think I definitely want to pursue this. He did very well and seemed very engage in the music.
It is Wednesday, January 9, 2012. Daniel has been slowly SLOWLY weaning back onto his regular feeds and seems to be doing fair. He has occasionally been wretching, but he doesn't seem anywhere near as upset as he did back on December 17 when we came in for the Pancreatitis.
Oh how long its been. I really want to go home. I've been here staring at walls and ugly views..napping in between doctors and nurses coming in and trying to keep my mind from turning into mush.
music therapy
Today Daniel is on 100% strength of his regular feed at his regular rate. And I have to watch him very closely to see if he has any upset. Labs will be drawn tomorrow, and if bad...then an ultrasound is needed. If good... then we can start talking discharge.
I look completely exhausted!!!!
I am doing the best I can. But you never sleep well in a hospital and I'm stir crazy in this room. Last night a little child was screaming and screaming in the room next to me. I didn't recognize the language, but I knew the child did not want ANYTHING to do with his nurse. It was so loud he may as well could have been in our room.
Music therapy
TPN nutrition still needed
trying to keep Daniel engaged
Whatever we can do to get his hands busy
But he has a hard time staying awake for long
Sweet baby shouldnt have to go through as much as he does
Staring at the sunshine through the window
Trying so hard each day that I wake up, to clear my head and live in the moment. But knowing that home is place that is also trying to heal and go forward, seems like a sad coming home. But home is home, and the people are the same. Hearts are just broken. I have been so focused into getting Daniel well that falling back into a normal routine almost makes me feel depressed. I don't really know what to do, or which way to go.
I'll find my way. The one thing that remains constant is how much I love my family and love being a wife and Mom. You think so much when you have so much time to think.
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