Today we woke up early and headed back to Children's Hospital. We have been spending our days there.Going to the 3rd floor is difficult because of the kids I see there. I dont really want to see any other floors. Today I met such a beautiful mom. I wish so much I could remember her name. Her son S had been taken back for an MRI at 8am. When we met it was 11am. She was so worried that when she ask about him or when we spoke she could hardly get the words out without almost crying. She was holding back. I know all to well about holding back. She would start to sound like she was going to cry and pause take a breath and start talking again. Her baby who is 2.5 was going to surgery and no one had told her. She knew of the surgery but thought she would be near him before hand. I ask her tactfully (I hope) what her son had. She said a whole list of medical terms that made my head spin. What I got was, trach, cleft palette, feeding tube, non verbal but signs, 3 holes in his heart, cognitively on track. I ask about CHARGE because it sounded a lot like a fellow bloggers son she said they tested him for that and so far nothing has come back. They say it may have been just a complete fluke. Well folks we all know God doesnt do fluke! So lets pray together for S and his mama, daddy and sister. Pray for a complete healing and for God to be glorified in this situation.
Noah continues to lose weight(wish I could!) and so they brought up the dreaded f word (no not that one)..feeding tube. Today we spent 5 hours in the hospital. He had an echo and ekg and then the dr looked at him, heart is fine, YAY!!! Then they squeezed us in for an ultrasound of his liver which took a while. We were there so long and my poor little failure to thrive hadnt eaten since 8pm yesterday. Thats a way to get him to gain weight, right? Poor guy. They finished the u/s and said 2 days we would have to wait to get the results. Ugh. I can deal with a lot but please God dont make me deal with the C word. I wont survive.
So right now we are outside covered in blankets, yes it is that cold here! Noah has 3 blankets on. Ok so maybe I am a little cautious. He sneezed like 5x today and a kid sat beside me at the hospital and coughed! Yes I know I sound silly.
In all seriousness, I'm exhausted. Oh Lord give me strength. As long as I can keep my boy I will endure all things for him, isnt that what love is? I wish others could understand. I can't call people or visit people and I dont have time to do as much as before because I am at that hospital day in and day out. Im not asking for much but cut me just a little slack in why I have not called anything. I dont need fights started. I need support. Guess sometimes that is too much to ask for.
Anyways, be blessed friends. I know I am seriously lacking in the picture department on this blog and will remedy that soon. Have a great night.