A hard day for me
Tuesday, January 27, 2015
This is not going to be a bouncy, happy, inspiring, blog. Today I am writing because I need to say this. It is a very tough day. My grand-nephew Eli, who is 3, is on his way to Duke medical center today for a stem cell transplant. Without it he will die. With it, he has a 60% chance. Yes. It has been a rough road for him and his mom since his birth. He did not eat well - would not breast feed or take bottles. He threw up every day. Not spit up. Huge vomiting. He has sensory issues, and things bother him. we laugh that he is forever taking off his clothes. But they hurt him. His baby teeth started to fall out because his jaw was dissolving. He had pneumonia 3 or 4 times. Yet with all that, he never appeared to be deathly ill - and still doesn't. When he began to bleed from his ears, his gums and his nose, the doctors finally began doing the tests that should have been done earlier. They decided he had Evans Syndrome, an immune disease. yet it didn't explain everything, and they did more testing and realized he has a much greater immune system problem. SCIS, or "bubble boy" syndrome. Except each case is unique. Most children don't survive to their first birthday. Eli has made it so far. I am so worried, and today is a day full of tears.
My mom and disabled brother live with my sister in Jacksonville, about 3 hours away. My sister and her husband will be spending as much time as they can with their daughter, Lisa and Eli. Eli's Dad is working and taking care of their other son, and he is just devastated too. My other 2 sisters and I have to step in and take care of mom & my brother. They need someone there. Right now I feel that weight is all on my shoulders, and my DH is not happy that I will be spending so much time away. The sleeping arrangements are not good, and he is not comfortable on a sofabed, so he will not be coming with me. And I want to go to Duke too. I love that sweet boy and his mama and my sister. I want to do whatever I can to help. But right now, I am drowning.
I don't need suggestions. I know I will get through this. I just needed to get it out so that I can get through the rest of the day.
Thanks for listening...