Category Archives: Uncategorized

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”

Our journey with Matthew and epilepsy… Today (Wednesday): We are five days away from Matthew’s surgery at CHOP. For some details, see:  https://www.chop.edu/treatments/functional-hemispherotomy Thursday: We continue the process of preparing Matthew. This morning we will let him know that he is having surgery on Monday, using a booklet and video (both prepared by CHOP). Friday:Continue reading “Countdown”

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Thank you to those of you who read these blogs. We do not take your time in reading them for granted and try to keep them short. I (Joan) am going to work my title backwards. HOLDING US UP: We are dealing with some immense issues, but this one thing I know: we have anContinue reading “Hope, Healing, Holding Us Up”

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