Friday, March 07, 2008

This Week's Update

Sorry to keep ya'll hanging. (Yeah, I'm sure you lost sleep over it!) ;)

NO Penny yet.
I have to say hands down that searching through poop has been the worst parental duty yet for me.
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Judah did amazingly at his EUA on Monday. Truly, it was probably the best one yet. What makes something like this "the best one yet"? Judah didn't cry too much throughout the process of getting him into his OR clothes, waiting for the procedure, talking w/ the anesthesiologists and receiving all the pre-op check over's. The outcome of the evaluation was positive, and wake up from anesthesia was the quickest and smoothest yet with no vomiting and really little disorientation if any. We were wheeled out of recovery and down to post-op. in record time.

It always helps to have our dear friend, De, with us. She makes any chore not seem so chore-like. She brought along her digital camera and took pictures of each step of the process for Judah to share with his brother and others who don't get to go along. I thought that was super sweet and thoughtful of her. And, I'm thinking about trying to put it into a booklet of some sort to send to the Sturge-Weber Foundation for them to possibly publish and make available to parents to share with their son or daughter to help prepare them for what is a very common experience for SWS kids, that being trips to the OR and/or being put under anesthesia for evaluation.

De may go along with us to a laser treatment and try to do the same thing as that is also a very common experience for SWS kids. Perhaps having a little booklet of pictures of a real person going through the procedure may help some children not anticipate it with such fear. I personally think my little guy is the perfect model, and he's getting to the place where, even though he doesn't prefer to go through what he does, he'll actually smile throughout the ordeal if asked.

In fact, when I took Judah into the OR this time, I thought I would formally introduce him to the doctor. Typically, he doesn't see this doctor because he's 'out' by the time the doctor sees him. And, since Judah asked on our way down to Hopkins this time what doctor he was going to see, I thought I would make a point of actually introducing him to Dr. Jampel. As soon as we step foot into the OR, Judah starts to cry (always....he knows what's going on at this point). But I introduced him to Dr. Jampel and asked if he could shake his hand. Through tears, Judah stuck out his hand to politely greet his doctor. What grace! I love my little, brave, amazing boy.

So, thank you for your prayers. We always need them and always feel them throughout these ordeals that are just "normal life" for us. Just because it's normal, though, doesn't mean it's easy by any means. And, we certainly appreciate your ongoing support to us through your prayers. Thank you so much. I don't know how we'd live our life apart from knowing God and having the support of His people.
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I'll end on a 'funny'...
I try to take the kids to the library on Friday's for a half hour story time. The boys resist participating with some of the finger plays and other interactive parts of story time. So, for a while I've been trying to encourage them before hand to be ready to participate with the librarian and other children. Today, Judah beat me to the punch with instruction. As we were getting ready to walk out the door, Judah said, "Mom, do you want us to "recitipate" today at story time? ;)

1 comment:

zz said...

So glad to hear all your good news. De is a godsend to you! I loved that Judah shook his dr's hand. So mature and brave! Recitipate. That's a keeper.