Noah woke up wanting his nightly bottle and now I am unable to go back to sleep...and so is he..... My mind filled with so many things.....if only I could put them all to the side so I could get some rest...
Sitting here watching him play is hard....How hard it is for him to do such little things. As he sits up and plays he falls over so easily. It is heartbreaking to watch him pull his little body across the floor. He gets so frustrated because his mind knows what his body is "supposed" to be able to do, but he is just physically not able. He is so intelligent and his determination helps keep me going....
Sitting here watching him play is hard....How hard it is for him to do such little things. As he sits up and plays he falls over so easily. It is heartbreaking to watch him pull his little body across the floor. He gets so frustrated because his mind knows what his body is "supposed" to be able to do, but he is just physically not able. He is so intelligent and his determination helps keep me going....
Next week is going to be hectic..Monday the daycare is closed so Lane will get to stay home and hang out with Noah. I am somewhat glad because he needs a break from work. Tuesday Noah goes to Primary Children's for a swallow study. Wednesday we all go to meet with Dr. Swoboda and he will be having an EMG, and Friday Noah has his tube surgery that was originally scheduled for Monday. They decided they didn't want to do it at their outpatient clinic when they found out he was just diagnosed with SMA...Then the week after we will be meeting a physical therapist and he will be getting a DEXA scan done.
I believe from here on out life is going to be pretty hectic for us and our little "bean." I remember looking at the ultrasound when I was first pregnant and he looked like a tiny little bean. Those days seem like the easy ones now. It's crazy how you always think life is rough at a certain point...and then something unexpected happens that absolutely blows your mind....
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