He's my world

I've decided to try a new course of action with my boy. He needs me too much for me to make him lay in bed and cry.

After his 10 pm feeding, I'm going to give him a bath, lotion, do trach & mickey button care and put him in a white t-shirt. Then, we're going to snuggled until he's asleep even if it means I have to stay up until 2 am.

The difference is that I will not be stimulating him after his bath... at all. Straight up cuddling only. He needs to sleep more than just 11 hours every 24 hours. Heck, I need more than 11 hours of sleep most of the time :P

I'm trying to ween him off his continuous feeding at night. Slowly. I think I'm going to decrease it by one ounce per month so he will be off of it by the time he is one.

So, its the first time I've mentioned what is wrong with him & my problem is that no one can tell me. The geneticist is pretty positive that its a neuromuscular disorder. He has a problem with pretty much all his muscles. This disorder affects how he digests & clears his secretions in his trachea.

When he was two months old, the doctor & I agreed that the best course of action was to do a trach, g-tube, fundo combination. He is doing great & gaining weight :) Looking at him, you wouldn't know anything was wrong and you would wonder what the purpose of the trach is, but once you try to move him, you would understand. At moments he is limp and at others he is stiff.

He's 6 months old and can't hold his head up & steady. His tracking is just so-so. He's a little delayed, but he's trying & determined :)

He's my world.