Monday, February 3, 2014

Toomee's 8th Birthday

This Thursday (Feb. 6th) is Talen's 8th birthday. This is also the time of the year where we seem to make a surprise visit to the hospital, or at least, that's how the last two years have played out.

 On his 6th birthday, he was so sick that he didn't show the slightest interest in opening his presents or having a party. Two days later he was taking an ambulance ride to a nine day stay in the hospital, courtesy of a severe pneumonia. That hospital visit eventually lead to his DMD diagnosis, several months later.

Shortly before his 7th birthday, he slipped and fell on his way to bed. That little spill sent him to the hospital with a spiral fracture in his femur. That year, he spent his birthday in a wheelchair with two pins in his leg.

Both years he didn't really get to have the birthday he wanted. This year, we decided to go really big to compensate. We're talking I-bought-this-ferrari-to-compensate-for-my-tiny-package big.

For starters, he wanted a suit to wear to his birthday, so we got him a Toomee-sized black suit. On Saturday, Feb. 8th, a limo is going to take him and some of his friends for a quick ride before heading to Cinebarre at the Arboretum. We've rented a movie theater to ourselves (which was surprisingly not *that* much more than somewhere like Monkey Joe's), where we're going to watch The Lego Movie.

The fun part (IMO) is we're getting some friends and family together to make a big fuss when the limo pulls up. People are bringing signs, cameras, other sorts of things to make him feel like a big deal when he steps out at the theater.

So if you are free this Saturday at 7PM, come meet us at the Cinebarre at the Arboretum and show Talen some love. We can't go back and make the crappy birthdays better, but we can try to retroactively compensate. :)


Wednesday, December 4, 2013

School News

We got word from Talen's teacher today that he is now reading at grade level. Since the beginning of the school year, he has jumped five levels to catch up with his classmates.

In Kindergarten, he got knocked out of commission with pneumonia and a long hospital stay. Last year he went out with a broken femur. Both happened right around the January/February time frame, so we're creeping back up on what we're now calling "The Cursed Season." Everybody keep your fingers crossed for us over the next few months.

I'm sure that his teacher this year (Mrs. Grimes) deserves some of the credit, and Izzy has been sitting and reading with him after school (which might be the biggest difference). Most of the credit is Talen's, though. In so many ways he works harder than everyone else just to maintain equilibrium, and he does it with such a positive attitude. What an awesome little guy...

Wednesday, November 6, 2013

2013 Q&A with Toomee

Last year I asked Talen a bunch of questions and posted them up on the site (last year's Q&A here ). No real thought was put into the questions, just figured they might get funny answers. Tonight I asked him the same questions, and got some different responses.

Link to the 2013 questions and answers.

Nothing else to add really. His answer to, "What makes you sad," gets a frown, but he doesn't skip a beat. Check it out if you have a few...

Sunday, October 6, 2013

Talent for Talen - The Sequel

The follow up to last year's show was a few weeks ago at Tremont, and I wanted to break from the silence to mention how things went and thank a couple of people.

Event recap starts after the jump, but here's a link to the album from the event.


Talent for Talen - 2013


Friday, August 16, 2013

Caramel Ameliorates Dystrophic Pathology

Ok, that's a misleading title. It's actually a trace chemical found in caramelized sugar, but it's semantically accurate.

University of Washington Study

Tuesday, August 13, 2013

Prosensa Webinar

Parent Project MD (www.parentprojectmd.org) organized a webinar with Dr. Campion from Prosensa to discuss their exon skipping compounds. I wanted to post some notes to the blog, but had to split my attention a bit so it's not exhaustive. If I'm being honest, it's probably nonsensical, but here it is anyway.



Friday, July 5, 2013

Bowman Birk Inhibitor Concentrate

At this rate, they'll have a cure before I finish going through treatment possibilities. Nothing to do for it but keep moving forward, though.

I finished the page on BBIC. You can read more on the main site: https://sites.google.com/a/toomee.org/toomee/treatment-info/over-the-counter/bbic