Monday, August 11th, 2008 by Deb Schwedhelm
We had family photos on both our schedules for about two weeks…Sunday, August 10th at 8 AM. Not knowing how Max was doing, after a week of Disneyland, I called Melissa on Saturday to check. She said that Max was doing pretty good but sleeping a ton and moody. She mentioned that Max was waking up later than usual and taking 4-5 hour naps during the day. Because of this, I told Melissa that I would just be on call for them. She could call me Sunday, when Max wakes up and is in a good mood and then, whatever time that is, I would meet them at PB Pier for our shoot. And that’s what we did.
Melis called Sunday at 8:30 AM, to tell me that Max was sleeping. He had woken up at 4 AM and was up for a while. I told her to just call when Max woke up and we could meet then. She called around 9:30 AM and we met at the Pier around 10 AM. They arrived, pushing Max in a jogging stroller. I was sad to hear that Max can’t walk at all right now. I later discovered that it was painful for Max to put any pressure on his feet/legs. We got down to the Pier and really, our only focus was to get one good family shot.
Max was such a trooper. He smiled for all the family shots. Once I knew I got one good shot, I told them we were done. I didn’t want to push…one was all I needed. But, I’m excited to say that I got more than one for them.
I asked Melis about Max’s increased pain and fatigue. She is suspecting that all his sleeping is due to the increased pain medication they’ve been giving him lately. And they were trying to taper off his Decadron, which they suspect might be causing his increased pain. So they gave him a large dose of Decadron on Sunday (Decadron causes Max lots of moodiness), hoping that that will help his pain and they can cut back on the pain medication, which is causing his increased fatigue. It truly is a balancing act for them…trying to find the right mix, to best help Max as a whole.
I wasn’t able to edit any photos last night and just finished editing this family shot. I plan to edit more this evening but wanted to get this one posted.
More later today!
ETA (2 PM):
Here’s Max in the jogging stroller. He had to stay in the stroller because his legs hurt so much.
Another family photo…
Max agreed to do a few shots with just him. Andy had to pick him up and put him over by the pier post. Andy, at one point, had to reposition and gently put Max on his feet, and Max said, “Ow..ow…ow Daddy. My legs hurt so bad”. Max wanted to keep his storm trooper and who was I to argue…I just incorporated him in the shot.
But as I said earlier in the post, the Decadron that Max is taking makes him really moody and Max went from doing okay to being really sad and done, in an instant.
Max, waiting for us to pack everything up.
And a picture I took of Max’s storm trooper. Seeing the image on my camera made Max smile. And even if for just a moment, there’s nothing better than seeing him happy. I promised Max a print for his room. He just loves Star Wars.
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