Here we go!
This is obviously a picture in the hospital the day of surgery. He had a foley catheter in as long as the epideral was in (2 1/2 days). The entire cast was green at this time - which he loved! But when they had to secure the gortex before leaving, they only had blue fiberglass.... so now he is multi-colored!
Below is Simon enjoying the high life! This was the first days home from the hospital, he spent more time in bed. No such luck now! Look at that stack of movies! We rented the hospital tray - but don't really need it now, so are returning it before we incur another month's rent on it ($40). He does still watch the portable DVD player before going to bed at night.
Below is a closer look at the carseat situation. It's the one in the forefront. I added the back to the seat and then built it up with those neck rests that you use on a plane to make it pretty firm and flat. We then use the regular seat belt. They do have harnesses and special car seats for different kid's sizes but this is what they said would work for us. I've thought of removing one of the arm rests which I can do with a screwdriver, but Simon had a fit at the mention of it for some reason. So he barely fits inbetween the armrests with his leg spread.
We put an extra twin mattress we happen to have in the shed on the floor in our den - which is kind of out of the way of the main living area. This has been great for him to lay on his stomach and lean over and play with toys. I then brought down the computer screen which happen to be right near by and he is currently obsessed with nickjr.com free games and videos....
I was quite proud of myself for thinking of this one.... how is he going to poop? Well, at the hospital they mentioned a "bed pan". Knowing my son, I thought he would NOT go for that very easily AT ALL! So I started thinking. We rented a commode and unscrewed the backrest. We put it at the highest leg setting (they are adjustable) and it was almost even with the bed. Perfect! since he is almost flat. We put the pillow and rolled up towel so he is slightly raised and he has been perfectly fine going potty in this chair. We also line it with a garbage bag so we can easily just take it out to the garbage! No mess to clean up! He is also easy to wipe right while he is on the commode (for those who need to know!) and we always kept a box of babywipes nearby. 
I do sleep with Simon because he has to be repositioned every few hours at least. Luckily shortly after his diagnosis just before age 3, he needed a new bed and I went with a full size and I'm so glad because when he needs a parent to be with him at night - we can also fit and get some sleep unlike on those little twin beds!
At first when we got home from the hospital I just went to bed when he did. But then I never had time to do anything! So I bought these extra long, extra tall bed rails from babies R Us and they are great. They actually slide underneath the bed when not in use. I put my side down when I go to bed and it doesn't even wake him up. These were a good investment - alittle spendy at $35 each - but well worth the break I get when he goes to bed at night. We keep a baby monitor we never got rid of in his room and the living room when we aren't in there so we can hear him stir. He is starting to turn himself from side to side and on his stomach at night by himself! Last night was the first time I think I didn't have to reposition him! But he gets cold, or hot, or tangled in the covers.... so you are awake many times a night - but it's getting alittle better. The first week or so is the worse because they needs meds through the night for pain control (and they don't always want to take it when they are half asleep - but are constantly moaning in pain - so they need it!) Luckily we are past that now.
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