Tuesday

I guess it's up one day, down the next.  Ben isn't feeling so great today.  He didn't sleep well last night so I really think he's just tired but I gave him some motrin just in case.  He is alternating between the couch and our bed.

Monday

Ben had another good day.  He hung out working on Lego projects.  Sometimes he just forgets that he needs to be resting so I have to remind him that he's just not ready for a lot of activity yet because he gets tired easily.  His balance is also off a little from the swelling.  He told me he almost feels like himself again and he told me nothing hurts so he doesn't need pain medication anymore.  It's really been a pretty amazing transformation.

After his first surgery he did well in the hospital but then had a really, really tough time once we got home.  This time it's been the opposite.  The hospital was rough but he has bounced back quicker than I thought he would.  I'm hoping we might be able to venture out of the house a little bit soon.

Sunday

Ben's transition home has been a little bumpy.  I think he thought once he was home life would go back to normal.  But obviously he still has a lot of healing to do.  So today he is pretty tired and I'm glad he is listening to his body and just hanging out on the couch resting.  His face and eyes swelled up overnight again but that's normal.   He says he is not in pain, which is pretty amazing I think.  Dr. K said the next couple of weeks need to be pretty low-key and he can't do any activities (like the swingset or bike riding) that could cause him to injure his head.  After that he can get back to playing but no swimming for about 6 weeks and we have to be really careful to keep his scar covered in the sun for the next 6 months.

Going home!

Ben had a good night and woke up sounding like himself again. Dr. K said we can go home today (although Ben told him he was pretty comfy here).  We are all looking forward to going home and seeing Becca again.

Hi from Ben!

As you can tell, Ben is doing much better. Eating and drinking and walking around.  He enjoyed checking out the view of the Washington Monument from our room. His eyes have even opened a little (he said "it's good to be back").  We are hopeful he'll be discharged tomorrow.

Friday morning

We were transferred out of the PICU late last night and it's good to be in a regular room. Ben was in a deep sleep and slept through the transfer. When he woke up a little while later his eyes were completely swollen shut. He was understandably very upset about that even though we told him it's normal and will go away. He is feeling very guilty about his outbursts the past couple days because they were so uncharacteristic for him and of course he's scared of more pain.  All of this makes for a very sad Ben right now.

I told him our goals for today are to start eating and to get out of bed a little. He is very anxious to go home and we need to start making some progress in that direction.

Thursday night

Ben had an up and down day today.  He had a rough morning but then perked up around lunchtime enough to have a milkshake and play a video game. Then he started going downhill again. He can just barely see out of his eyes so I have a feeling they will be swollen shut tomorrow. We are going to be moving out of the PICU soon.