August 11, 2017 10:05 pm
We are happy to report that it was a better day today. Now, don't misinterpret. It wasn't that Josh did anything fantastic today; it was just finally a day where we felt he went forward instead of sideways or backwards. And that felt good.
He was more alert today and connected with the world around him. He was relatively interactive, answering more questions accurately than usual. He also had more to say than any day before. Some of what he has to say makes no sense, but some does.
The nurses ask basic questions of Josh several times throughout the day to monitor his situation. They often ask when his birthday is, which he never gets right. Except today, when he got it right once! We were both surprised. But he still can't answer even the most basic questions at times (for example, his name and who we are) and gets confused easily (can't remember we're in a hospital), so we have a very long way to go. Victories are few and far between, so we'll take one if we can get it, even if it is small.
Here is what Josh 2.0 looks like with a forehead (and a smile)! Still a little swelling in his face but much better than yesterday. Right eye is still completely sightless but tracking a bit better.
Here is his scar. See the bulge over his right ear (our left side)? That is the regulator on the shunt, and yes, it does stick out.
This is what Josh 2.0 looks like walking.
Dr. Rubin stopped by to check on Josh today. He gave us a realistic model of Josh's skull and new bone flaps that was made by the company that produced Josh's synthetic bone flaps. The model is smaller than actual size but still very interesting to see. He also gave us photos of Josh's actual surgery -- both before and after replacing the synthetic flaps. Josh seemed very interested in the model and the photos when Paul explained them to him. The photos are real and so a bit too gruesome to post here, but let Paul know if you want to see the photos and he'll send you a copy.
Oh yeah. The ice cream machine was out of ice cream yesterday but was back in working order today. That's a small victory too.
We are happy to report that it was a better day today. Now, don't misinterpret. It wasn't that Josh did anything fantastic today; it was just finally a day where we felt he went forward instead of sideways or backwards. And that felt good.
He was more alert today and connected with the world around him. He was relatively interactive, answering more questions accurately than usual. He also had more to say than any day before. Some of what he has to say makes no sense, but some does.
The nurses ask basic questions of Josh several times throughout the day to monitor his situation. They often ask when his birthday is, which he never gets right. Except today, when he got it right once! We were both surprised. But he still can't answer even the most basic questions at times (for example, his name and who we are) and gets confused easily (can't remember we're in a hospital), so we have a very long way to go. Victories are few and far between, so we'll take one if we can get it, even if it is small.
Here is what Josh 2.0 looks like with a forehead (and a smile)! Still a little swelling in his face but much better than yesterday. Right eye is still completely sightless but tracking a bit better.
Here is his scar. See the bulge over his right ear (our left side)? That is the regulator on the shunt, and yes, it does stick out.
This is what Josh 2.0 looks like walking.
Dr. Rubin stopped by to check on Josh today. He gave us a realistic model of Josh's skull and new bone flaps that was made by the company that produced Josh's synthetic bone flaps. The model is smaller than actual size but still very interesting to see. He also gave us photos of Josh's actual surgery -- both before and after replacing the synthetic flaps. Josh seemed very interested in the model and the photos when Paul explained them to him. The photos are real and so a bit too gruesome to post here, but let Paul know if you want to see the photos and he'll send you a copy.
Oh yeah. The ice cream machine was out of ice cream yesterday but was back in working order today. That's a small victory too.
I'm so glad you had a forward moving day! Josh actually seems a little bit happy in that picture! He's so lucky to have you guys loving and supporting him.
ReplyDeleteHooray for process! And hooray for ice cream!
ReplyDeleteStill a bit tiptoe-y. Dat's our Joshie! His head shunt regulator thingie does look really obvious. Is that permanent? I guess with hair it won't be so bad. How the heck do they know when too much fluid is draining? Is it all observation of his behavior, or does the regulator have like a PSI gauge?
ReplyDeleteHis head shunt is obvious and permanent; we are hoping hair will mask it. The only way to know if too much fluid is draining is by observation of behavior, which is SUPER hard and frustrating because how are we to know if it's fluid levels or TBI. It is one of the scariest things we are dealing with right now.
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