Thursday, August 5, 2010

Adios, Vigabatrin

First, some pictures (because Blogger is clunky and always uploads the pictures to the top of the page...grr!)


I'm imaging Julia saying "Hey Daniel...come back!", an oft heard phrase around these parts.

I really don't want to think about how safe that water may or may not be to play in.

Puppy's still kicking.

Daniel's kitty cat (or as he says it, "kee-cah"). Kitty Cat is to Daniel what Puppy is to Julia. Aww.

And now for the actual blog part:

Its been over a week since Julia last took a dose of Vigabatrin. It's amazing to think that a drug that she took twice a day since she was 6 months old...four years of her no longer a part of our daily routine. No longer does she have to swallow multiple tablets morning and night. No longer do we have to jump through the ridiculous hoops that were set by the drug's US manufacturer as part of their CYA policy (cover your ass, if you have to ask). It's glorious! Glorious, I tell you. The twitchy leg thing I talked about in my last post hasn't been seen in a long time either. So now she's only on one drug, Trileptal, which is a liquid medicine that she doesn't seem to mind (in fact she sometimes calls it her candy).

Therapy is going very well. She seems to have had another language burst lately and her speech therapist told me yesterday that she's doing very well with describing stories in books. For instance she'll ask Julia "What is the girl doing?" And Julia will respond with she's running, she's playing outside, etc. She also likes to get my attention by saying "Hey Mommy" which cracks me up.

She is also doing well in OT and her therapist says she has really regained a lot of dexterity in her right hand, the one that was affected by the surgery. She no longer has to hold a puzzle piece for example against her stomach in order to support it so she can turn it around. She can use her fingers to turn it around one handed. I got to watch her on the closed circuit camera last week and I was amazed by her attention span and level of cooperation. She's come such a long way!

Tomorrow is the last week of summer camp for both kids. They participated in an 8 week morning program at their school and LOVED it. Julia got to swim every day, which was heaven for her. I can't believe how well she does in the water. She swims holding on to the noodle and kicks her feet, and would stay in the pool for hours if allowed to. Daniel also enjoyed his program, and except for a couple of biting incidences (we had another one today...doh) has adjusted well to being a big kid who goes to school. They will be off for a couple of weeks and then they will start school again on August 25th. We are headed to Boston in a couple of weeks to visit some friends so that will be a fun diversion while they get a break from school.


blogzilly said...

That's all great news to hear about the progress.

About Blogger photo insertion. True, the old Blogger layout does insert at the top. There are two ways around this.

1. Use the updated Blogger layout interface. In your 'Settings' tab go to Basic, and scroll down. At the bottom there is a section called 'Global Settings'. There you can select the updated Blog Editor.

2. If HTML does not scare you, click the HTML tab after you have opened up New Post, then when you upload a photo copy the HTML code of the photo you have inserted and paste it anywhere you want in the post. This is what I do, but I only use the HTML editor because I know a bit about HTML. The photo you have uploaded will have a code that looks like a bunch of things to worry about but that's just a grouped code that 'defines' the thing you are doing.

But as long as you pay attention to that (the beginning on the code for that photo) and (the end of the code for that photo) you needn't worry about understanding all the gobblygook in between.

blogzilly said...

OK, that last paragraph doesn't make sense because since I was describing HTML and used a piece of it the post was changed when interpreted by the HTML reader. Here is how it should be, just ignore the spaces I leave on either side of the 'A'.

But as long as you pay attention to that < A > (the beginning on the code for that photo) and < /A > (the end of the code for that photo) you needn't worry about understanding all the gobblygook in between.