Sleeping like a baby - literaly.

I just wanted to give a quick update on how Eli is doing and share some pictures of him and his brain.

We got out of the ICU on sunday and are relaxing in a room that doesn't have windows on all three sides where you can watch the saddest things you've ever seen in your life. Eli is doing well: eating well (if you count ice cream as good food), walking around a bit, chatting with the doctors and SLEEPING. This kid is very tired, but can you blame him? He's sleeping like a baby. Just like a newborn. He sleeps, wakes up, eats, goes back to sleep.... The first couple of days he was actually even nursing in his sleep, which he hasn't done in well over a year. It was pretty cute. I guess maybe the trauma made him regress back a bit. I know when I get sick I'm a whiny little brat. Anyway, he's not quite the chipper Eli we usually see in the hospital after surgeries, he's just exhausted. He is however, getting better and stronger every day and we know that after such a major surgery it will take him alot longer to get back to his old self.

He has also developed a strange urge to create combinations with his food - he doesn't want red or orange jello, he wants red AND orange jello, together. We asked him the other night if he wanted some soup or some crackers or some jello or some chocolate pudding and he said "I want to dip crackers in pudding." So that's what he had to eat, saltines dipped in pudding.

Lastly, here's what Eli's post-surgery MRI looks like. Look mommy there's no tumor! The image on the left is from February, the one on the right is from saturday.

We are set to go home either tomorrow or thursday! Yay!!!

Post-Op Status: Where's ELMO!!!

Eli's surgery finished up at about 7:30 last night. The surgery went pretty well. No major problems or obstacles. The neurosurgeon believes he was able to remove most of the tumor. There is some residual, an unknown amount, just below the optic chiasm (see pictures). This is difficult to remove in a child due to the surgical approach that must be used. Removal of tumor in this area can lead to total vision loss and stroke. We will know on Monday after the MRI the extend of the residual/remaining tumor and what the next treatment steps will be.

When we first arrived in the recovery room, Eli was just waking up. I have him his favorite blankie and then he opened his eyes and in a gruff-whisper said "Elmo, I want Elmo." We could not have been happier than to hear those words! Odd as that may sound it was an indication to us that he was going to be okay! He remembered Elmo and remembered just how much he loves Elmo.

This morning, after a bit of a rough night sleep due to a little fever Eli told me "Mommy, my watch says I need to sleep more!" So there you have it! After a little orange and red jello ("orange it better") Eli went back off to sleep. He is moving all his fingers, toes arms and legs and counting fingers and reading "GET WELL" on a balloon.

So that's it for now. We will be in the PICU for the weekend to monitor his electrolytes and manage his pain.

We will keep you updated. Thank you for ALL the wishes, love and support. It is truly helping him recover.

Our love,
Always,
Meagan and Jacob

In this picture the #2 is the optic chiasm. In the picture above one can see how the optic nerve which crosses at the chiasm lies just above the tumor area.

TWO POSTS TODAY 4/2/10

In Surgery...

As I sit here typing our dear Eli is under the expert and caring hands of our wonderful neurosurgeon. In 6 hours we hope that the tumor is out and Eli is returned to us just as he went in. We know you are all thinking of him and sending lots of love.

Thank you,
Meagan and Jacob