Category Archives: Uncategorized

Someone on “Team Matthew” must have been praying at 1 o’clock this morning! To that person I say, “Thank You!” I slept from 11-1 when I heard: “Mommy, I can’t get out of bed!” All the alarms were going off (a sound to which I’m getting inoculated, being in here 24/7). I jumped out ofContinue reading “Early Morning Prayers”

Matthew’s afternoon nap began later than usual this afternoon, so I decided to sneak in an outside walk until it was time to get him out in the chair again for dinner. I was sure he would not awaken before I got back. As I came down the hallway, I heard lovely classical music resoundingContinue reading “Black Tie Dinner”

I (Ron) am writing the update this time because things are getting busier for Joan and she is a little tied up. One of her constant jobs is to make sure Matthew is comfortable and isn’t grabbing at the drain coming from his head. When he is out in his chair he isn’t restrained, andContinue reading “Trending Upward”

This is Matthew’s first time out of bed! Doesn’t he look great? He did fade fast, though. In five minutes of being up he fell asleep. Joan’s comment: “This is where I have to believe the staff here, the the push must begin despite how mamma’s heart feels.” Although a picture speaks a thousand words,Continue reading “Up and Out of Bed”

Matthew and I are still hanging out in the ICU. He continues to be on an external intracranial drain which comes out of the top of his head. It also measures the pressure within the cranium. This very much limits his positioning and movement in bed and is the reason he is in ICU. IContinue reading “Medical Day 3”

After a very rough start of the day, we are coming into an evening that is a bit more peaceful! He finally was able to eat something tonight and it exhausted him – he fell asleep while still chewing last bite. I showed him a picture of himself and he thinks the surgeon did aContinue reading “End of Day Two”

Day 2 at CHOP: Matthew woke up at 10 PM last night. He knew who I (Joan) was. He tried to talk, but his breathing tube was still in, so he finally got it pulled. Breathing great! By midnight he was talking sentences and moving his left side. By 2 AM I started to seeContinue reading “News from the PICU”

Hi everyone, Kari here, I thought I’d give you an update from the home front. I’ve been the one updating the posts for dad, always trying to do what I can to support this crazy family of mine! I’m pretty proud of my littlest brother, I think he’s a cool little dude and can’t waitContinue reading “Note From the Editor”

At 5:00pm we saw Matthew’s surgeon. Everything went well, there were no surprises. Matthew was stable the whole time and didn’t need any blood transfusion. He will probably have some right side muscle weakness from which he’ll recover during rehab. But first he has to recover from this surgery. It is possible he will needContinue reading “Surgery Wrap Up”

We arrived at the hospital at 5:30 this morning. At 7:30 when we gave him our “see-you-laters” he was excited as anything to have his bed wheeled to the OR. He’s been excited ever since we told him about this hospital stay – so much so that he had trouble going to sleep last night.Continue reading “Surgery is Underway”