Well I'll give a bit of an update first, so Jeffrey fell ill 2 days before his expected cardiac cath so he was not able to have it done. His nose was apparently coming out of his eyeballs (his complaint, not a diagnosis!). It has been re-scheduled for March 18th. He has a VP clinic appointment for his throat/speech March 13th. Neuromuscular appt and EMG and E.N.T April 1st. He also has a sleep clinic on April 9th.
With Jeffrey we're always trying to find balance. I find as he grows, it gets harder and harder. Do I let him play hard with all the other children? Even though it sends him into fits of coughing and makes him exhausted or do I force him to rest and slow down?
He's only 32 pounds and barely maintaining that plus he's a picky eater. Do I force him to eat the food he cries is disgusting? Do I only cook food he likes (pizza pockets, spaghetti, mac&cheese, toast)?
What about his sleeping arrangement. He refuses to sleep in his own bed because he's scared of the 'bad ghost' in our house (according to him). I let him sleep with us because I have always enjoyed bed-sharing but now it's to the point he wants one of us to cuddle him to sleep. I have no problem with that personally but would it be better for him in the long run to sleep on his own?
Hi, Ashlee. My baby (still in the womb) was just diagnosed with Double Inlet Left Ventricle. This is how I found your blog. Even though my son hasn't been born yet, it's just comforting for me to read other people's blogs to know what to expect. I know your blog is just for you to think out loud, so I hope my responses are okay to leave. About your question of sleeping arrangement - with my first two kids, I let them sleep on their own (I was working, so they had to do this!). With my current three year old, we thought he was going to be our last, so I wanted to spend as much time with him, and when I put him to bed in his room, I lay next to him until he falls asleep. Because I now he will wake up at a certain time, I usually go back up before he does. I know there will be a time when I will have to just lay him down, play some music for him, and leave him, and for me that time will probably be when he starts school! He has his own twin sized bed, so you might want to think of getting him a bed that's big enough for you to share and start doing that, and then transition. I know mine wakes up in the middle of the night, and he's fallen back to sleep on his own (sometimes). I hope he's doing well!
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