Time together

Our days in the apartment were spent playing together. Evan was able to scoot around on the floor, and he would walk around the furniture. I was constantly sanitizing everything he could touch, the tables, his toys, the bed rails, his high chair. We would take long afternoon naps together, which was very nice being that I was up half the night changing sheets, putting more feeds in the pump. Evan has been sleeping in the bed with me for a while now, I can't bear for him to sleep alone, and it also calms my fears.

Anthony and the boys were suppose to join us at the apartment when Evan was released, but due to a vaccine they recieved, they had to stay away for another couple weeks. On pretty days, Evan and I would go for rides, taking in the sights of Cincinnati, he usually slept almost the whole time. My Mom came up to stay with us some, it was so nice to have someone else there with us. I missed Anthony so bad, just having him there to lean on when I was afraid, to talk to when I couldn't sleep. And oh how my heart ached from being away from my boys. I have always been fortunate enough to stay home with my children, I could count the times on one hand that they stayed with a sitter, and at that it was family. So, this was like torture. I knew Evan missed them as well, most days he would just lay on my chest, I could feel his lonliness, as I'm sure he felt mine.

One afternoon as I was hooking up Evan's feeds, his tube got stuck down in the side of the couch, when I picked him up, it shot right up and hit him in the eye. I called the Dr. on call and they wanted me to bring him to the ER. I couldn't stand the thought of taking him to that germ ridden place. I was fortunate to meet a wonderful friend while staying in Cincinnati, and she went to the ER with us that night. I was glad we took him after we found out that he did scratch his retena, he was put on eyedrops and they said it should heal in a few days.

Just a few days later, he ended up with a fever, just at the 100.5 mark, and we had to go back to the ER. We were in there all night, they addmitted him and drew cultures to find out the source of the fever. It ended up being an infection in the central line, E coli, so we were in the hospital for another week. The day after Evan was addmitted was my 30th birthday, so Anthony came up and relieved me so I could go get my hair done and spend a night relaxing. It was not the way I pictured my 30th, I missed my family so bad.

Evan was finally reuninted with his brother's after a very long two months. It was very emotional, Landon kissed him over and over, and Ethan and Logan just wanted to hold him. They didn't seem to notice his drastic change in appearance, all they could say was how cute he was.

He was only able to be back with his Daddy and brother's for one week. He got a fever in the night, we once again made the call to the hospital. They told us we could wait and bring him to clinic in the morning. When he woke up that morning I was in complete shock as I looked at him. His eyes were swollen shut, his mouth was full of sores, and the skin on his face was peeling off. GVH (graft versus host disease). I remembered them telling us this could happen, but I never imagined it would look this bad. Anthony had to stay at the apartment with the boys, so I was off to the ER with him again, alone. I cannot even brgin to tell you how afraid I was. The Dr.'s were in and out, drawing blood, checking blood pressure and temp. He was in so much pain, he cried and cried. His heart rate was 220, and he has a temp of 103. He was addmitted and started back on high dose steroids to try and fight it off. GVH is the body trying to fight off the new cells, but a tiny bit of it is actually a good thing, it shows that the body is doing what it's suppose to. Evan was diagnosed with stage 4 skin GVH and he remained inpatient for another three weeks while his body healed. When I looked at him, I couldn't imagine his skin ever looking normal again, he looked like a burn victim. He eventually started scabbing up, lost all the dead skin, and beautiful new skin was underneathe.

I got really down when he was in with the GVH, I felt I was praying with no response. I missed my kids, my marriage was on the rocks. It's crazy what stress can do to a person. I would lie awake watching him sleep, praying God would heal him. Asking God to hold me in His arms so I could close my eyes, just for a little while. It's amazing how, even when you doubt God, He knows your heart, and He never leaves your side, He was holding Evan all along. I have been asked the question many times, "As a christian, why do you think this is happening to your child". I guess my response would have to be, if Evan's story has touched even one person and brought them to Christ, then that's reason enough. I have been told how strong I am, I am only strong through Jesus holding me up, and there are days when I cry all day long, and feel as if I can't do it any longer, but then, He puts me back on my feet, wipes my tears, and tells me I am not alone, and I never will be.