The day after surgery

Ethan is doing ok...not bad but not great. He's in a considerable amount of pain as to be expected but is also struggling with painful muscle spasms. The staff here has been top notch and we cannot complain at all. Right now the plan is to remove the epidermal tomorrow and to give him pain meds via the IV alone. In addition, he'll likely get casts on tomorrow as well as a removable stabilizing bar. He's making progress and the bumps we're seeing are typical...nevertheless it's never fun to see your little one in pain of any kind. Right now our predicted discharge date is Saturday.

To my 1st grade class--the day after

Today has been hard. My muscles keep wanting to move and twitch and they hurt a lot. The nurses give me medicines that help make me feel better but they also make me sleepy. Mommy keeps saying sleep is what I need so I guess I'll listen for today and take lots of naps.
The picture is what my legs look like right now...

Your friend , Ethan

To my 1st grade class...I'm okay!

Well surgery is over and I'm feeling okay. I still have lots of machines hooked up to me which give me medicines and make sure my body is working okay. I'm also in a very special care area which take extra special care of kids like me after surgery. My legs have special casts on them right now but in a couple of days I'll get different casts and I'll get to pick the color of the casts! Well I better go to bed but I wanted to say I'm okay. I'll leave another message tomorrow. Your friend, Ethan

Surgery update

Ethan's surgery is over. The surgeon said he did very well overall. Nevertheless as to be expected...he is in ALOT of pain and is in the ICU. Hoping the pain meds help and that the anesthesia wears off soon.

To my 1st grade class...luv ethan

I'm doing okay here...they have lots of fun stuff to do here at the hospital and the nurses are really nice too. I have my own TV and a remote that can do lots of cool things like make my bed move, turn the lights on/off, call a nurse and turns on/off the TV. I'm a little scared about surgery but excited too...gotta go as the doctors are here to take me to surgery but I'll send another note later. Miss you all!

Your friend--Ethan

Tomorrow

Tomorrow is the day...surgery at 9:30 a.m. In the meantime it's 11 pm and the tears ate streaming down my face as I attempt to make this update. Why? Partially out of sheer terror as a parents 1st instinct is to protect your child from pain ...I'm deliberately subjecting him to pain & a lot of it...if he was in a lot of pain I might not be feeling as bad but right now he's feeling great which I think is part of my issue...the other underlying reason is likely relief as this is what we've been waiting for... A chance for our son to walk and stand on his own.i will pass updates as I can tomorrow. Until later, Lisa

The day is almost here...

Well the big day is almost here...Ethan is so very excited however I am scared to death. Not sure I know what I'm scared of as the doctors at the Shriners are good drs...after all this is the surgery that we've dreamed of and worked so hard for. Maybe its taking away all that Ethan has worked for as of late, despite knowing that sometimes you have to take things away to give your child more. Maybe it's concern of the general unknown...who knows...but nevertheless we move on and our adventure continues. So tomorrow we adventure on to our Pre -op appt and then off to some "fun"...aka Como Park. Surgery is currently scheduled for 7:30 a.m. Tuesday so I will update the blog as we know and hear more over the next few days. Your prayers for strength, wisdom and peace are much appreciated. Until later, Lisa