Well, after a week of sleep training, we are actually getting a little sleep in the Coley household. The first few days were rough and full of tears but also full of sleep. The first night he cried for an hour. It was one of the most difficult things I have had to do. I had to keep reminding myself, and Dion reminded me, that we were doing this for him as well as for ourselves. He was so tired that he was grumpy and fussy all day and had dark bags under his eyes. He needed sleep as much as we did. After the hour of crying, he slept for five hours straight! Unreal! He woke up and we fed him and he fell back asleep for another 5 hours. Crazy! He took a 2.5hr nap the next day after only 10 minutes of crying. He has never in his entire life taken a nap that long. The week has continued to have some tears, but much more sleep. He gets up 1-2 times a night to eat. The last couple of nights he has woken up a few extra times because he rolls over in his sleep and can't figure out how to get back to his original position. I guess he is practicing his new skills in his sleep. He is so much happier and content during the day as well. Overall, he is doing much better. We are still sleeping in the living room, while he sleeps in the bedroom to allow him to get optimal sleep. It's tough, but we are coping.
Elijah had his cardio appointment this week. I was hoping that this would be the last appointment for another 6 months. Instead, we have to go back in two weeks. We have never had to go to the cardiologist twice in one month. We have had to go to many different specialist, and at times had multiple appointments a week, but never an echo, x-ray, and cardio twice in one month. His cardiologist is concerned about narrowing in his aortic arch as well as wetness in his lungs. The cardiologist doesn't like how hard little Elijah breathes. There is also concern about his weight. There was talk of another cath. This was what resulted in our last 3 week stay at CHLA. Ugh. Dion took him to this appointment because I had already missed several days this school year to attend to Elijah's needs. I wish I had been there. I know that I wouldn't have done anything differently than Dion, but there is this incredibly feeling of helplessness and fear at not knowing everything. Being a working mom is hard, but being a working mom of a child who has special needs is almost impossible. There just aren't enough hours in the day to take care of everyone's needs. I worry about everyone and yet I can't seem to make things better for anyone. At times I don't feel like I do a good job at home or at work. There just isn't enough of me to spread around. I am hoping as he grows older and stronger that this will get easier. At least that is my hope.
On an entirely different note, Noah had his first trip to Disneyland last weekend. It was bittersweet. His old babysitter took him and I was unable to be there. It was so hard for me to say he could go. I really wanted to be there for his first time but I couldn't say no just to have him sit at home with us all day. He had a wonderful and time and loved the trip. I added a picture of our big boy at Disney.
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