Archive for 'Glycogen Storage Disease'

CRASH!

Posted on 02. Oct, 2011 by .

0

Sorry, I couldn’t help it. I like dramatic titles. Ok, I know that I always take twice as long to say anything as I need to, but I’m really going to try to keep this short. I have some seriously fun stuff to blog about next. Also, this post doesn’t have a whole lot about [...]

Continue Reading

Last Day

Posted on 26. Jul, 2011 by .

0

Phew, we made it. We were released Thursday about noon, so we had the rest of the day to play and relax. We decided to go swimming while it was hot. So, we loaded up with snacks, glucometer, test strips- oh yeah, and towels- and headed to the pool. I now know why my mother [...]

Continue Reading

Report Cards

Posted on 26. Jul, 2011 by .

0

Now, the moment we’ve all been waiting for…. Dallin: Cholesterol (should be less than 170)                                    2011: 144 Triglycerides (should be less than 200)                                2011: 119 LDL (bad cholesterol should be less than 100-110)            2011: 76 HDL (good Cholesterol should be above 45)                        2011: 42 Uric [...]

Continue Reading

Second Hospital Day- Improvements

Posted on 25. Apr, 2011 by .

2

The highlight of the second day was meeting Dr. Weinstein’s new dietitian Kathy. Can I just say, she’s fabulous! Very down to earth, but understanding and compassionate. To top it off she definitely knows her stuff. When you think about it, a GSD dietitian has a very tricky job. Food is a sticky subject at [...]

Continue Reading

First Hopsital Day

Posted on 24. Apr, 2011 by .

0

Jonny and Dallin got to go first this year. When we got upstairs I had serious guilt about being sick in the clinical research center, where no one is sick. I ended up putting myself in quarantine and using hand sanitizer every 5 minutes. The good news is the boys got to see one of [...]

Continue Reading

Not as Planned

Posted on 20. Apr, 2011 by .

0

At my last post, I thought things were going to go as planned. Oh, Silly Jilly. On the flight from Seattle to Chicago, I ended up showing signs of that nasty flu that the boys had had the week before. I could help with starch and the boys ok until we got to Orlando, and [...]

Continue Reading

2011 The Week Before Florida Trip

Posted on 12. Apr, 2011 by .

1

Right now, I’m sitting in the airport waiting for our plane to arrive. Normally, the adventure is just about to begin, but for us, it started last Monday with lab work for all four, and ultrasounds for the older two. Ben took Jonny and Dallin for blood draws, while I took Mark and Ethan for [...]

Continue Reading

2010 University of Florida Trip

Posted on 12. Apr, 2011 by .

0

I just realized that I never blogged about our 2010 trip to the University of Florida. To sum up, it was fabulous! Our appointments were on a Thursday to Friday, and then on a Monday to Tuesday (not even Dr. Weinstein can handle all four boys at once). Saturday and Sunday we were able to [...]

Continue Reading

The second half of 2010

Posted on 19. Jan, 2011 by .

8

The good thing about staying busy is that I have a TON to blog about. The bad news is I don’t have any time to blog! Since the last entry, we took care of Dallin’s spider bite by going to the would clinic for a series of appointments (I <3 silver bandages!), school started, crazy [...]

Continue Reading

Older Entries »