Thursday, June 5, 2008

Two week post surgical update

I thought I'd send you an update on how Brody is doing. We're coming up on 2 weeks post surgery.

New date: June 25 - Jeremy and Brody travel to Salt Lake for a cast change. Actually, a cast to splints change. Not too excited yet because the splints still have to be on 24/7. However, once the splints are on for a month, then they only have to be on at night. And no, I don't know for how long that goes on. I wish someone would give me a pad or notebook and I could write down all the questions I have. Oh wait, someone did. More than one person did. I just choose not to use them. Excellent thinking, that.

Thursday, August 26 - this is the day (currently) that Brody is scheduled to have the thumb pollicization surgery (if you think that word is hard to pronounce, try spelling it). What is thumb pollicization? Click here -

http://www.vacterl-association.org.uk/index.php?option=com_content&task=view&id=13&Itemid=11 or here:

http://www.eatonhand.com/img/img00030.htm

I am told by reliable sources that mercury is in retrograde, and therefore that it is possible that dates and plans will change often in the next 4-5 weeks. But I'm pretty sure this is when the left thumb surgery (his 7th surgery) will occur.

Brody is doing well, all things considered. The poor little man is still soldiering on in the world of walking. I now know what "baby steps" means. So much of walking involves using your hands and arms to pull up. Before he got the fixators, he was on his way. Then the fixators slowed him down. Then just when he was starting to take many steps, he had the 2nd fixator surgery and was very ill. Then 3 weeks later, he has another 5 hour surgery and wakes up with heavy casts - which weigh almost two pounds. That's around 10% of his body weight.

However, when I picked him up from daycare yesterday, they told me he took 10 steps, by himself. His teacher said the whole room stopped and watched and cheered him on. Brody did a repeat performance last night, walking to his toy box in the living room, Jeremy and I looking at each other, then at Brody, then at each other again, surprised grins on our faces.

So while Brody's walking is improving ever steadily, his eating is reverting slightly backward. He's hitting the bottle hard. I think he is incredibly frustrated that he cannot feed himself (his casts are over his elbows, and the elbows do not bend and we cannot change the position of the casts because that would cut off blood supply to his hand). Brody did not like anyone feeding him before the casts. With the casts, he will deal with it for a few bites, but then refuses to eat more. So he is drinking a lot of milk. I think it gives him comfort.

Just imagine if you woke up, and suddenly you had hard casts over your arms and hands, and could no longer bend your elbow (and had a rod drilled through your ulna). And you had no idea why. I'd be angry, depressed, confused, terrified. Not Brody - he is frustrated, definitely. But still mostly his sweet self. He doesn't even know the casts are temporary. And yet still manages to have fun - he discovered last night that hitting his casts on our glass coffee table makes even more noise than hitting his fixators on our glass coffee table.

He also likes to "clap" - meaning, he likes the noise that hitting his casts together makes. He claps when we watch the French Open on t.v. - he applauds when the audience does. Sometimes if he does it too hard, he says "owie" but mostly he is off the pain meds. If only I could go on them!

3 comments:

Rebecca Batey Fradin said...

Hello! I stumbled across your blog while searching for something else and what a treat. My son also has VACTERLS. You're so great and putting it all down in words. Hope Superbrody continues to do well!

Best wishes,
becca

Robyn said...

Woo Hoo! Go, Brody! You're a walking machine!

Take it a day at a time, Chris. We're all here for you.

Marlene said...

Hi my son has VALTERL too. We can't wait to get the pollicization done on his right hand. Please keep us posted on how that goes for you guys...

Best wishes,

Marlene