Friday, May 29, 2009

Beat the Bridge -- our first 5 years

2005 -- 1 month post-diagnosis and still unaware of what this
disease really meant.

2006 -- surviving kindergarten on NPH required a lot of discipline
for a 6 year old!

2007 -- first grade was still tough but the discipline was now
second nature

2008 - after a hellish 3 months on Lantus (Sain does not respond
well at all to Lantus) the pump is making life easier in second grade
2009 -- third grade with pump and CGM attached. You
would think life would be simpler now and in ways it is. But
I've learned a lot in these last five yearsand the more I learn,
the more I desperately want that illusive cure for Sain.
She doesn't deserve this -- no one does!

Tuesday, May 26, 2009

Our Morning by the Numbers

7 – the time we dropped Aidan off at Grandma and Grandpa’s so we could make it to Sáin’s endo appointment at Children’s on time.
2 – the number of security “check points” now required to get into Children’s. (One flu check and one security badge check)
34.5 – the number of kilograms Sáin now weighs. (about 76 pounds – only 6 pounds less than I weighed when I started high school!)
139.1 – the number of centimeters tall Sáin is. (about 4 ft 7.75 inches)
4.4 – the number of centimeters she’s grown in only 3 months! (that’s 1.75 inches!)
8 – Sáin’s A1C. Not as good as we would like but it will be better next time.
205 – what an 8 A1C equates to in BG averages
6 – the number of fasts we get to do in the next two weeks in order to reset her basal rates. (I say “we” because I do the fasts with Sáin. It’s unfair to make a kid fast alone.)
.4 – the bolus Sáin needs to give herself before disconnecting for karate. I’ve been reluctant to give a bolus before karate for fear of lows but a jump of 1.1 in her A1C changed my (and her endo’s) thinking
75 – Sáin’s new sensitivity setting on her pump. (This mainly just means she’s getting bigger and requires more insulin. It’s her first sensitivity change since diagnosis.)
And, most importantly to Sáin, 3 – the number of weeks until she’s officially a 4th grader!

Tuesday, May 19, 2009

A year ago...

I was here and I was happy.

Tuesday, May 12, 2009

Burn Out

I am tired of this disease.

I am tired of what it does to my daughter. I am tired of what it does to my son. I am tired of the extra pressure it puts on my parents. And I am tired of what it does to me.

I am tired of having to contact the school when kids are extra stupid (Sáin deals with most playground issues on her own but I step in when need be.) And I am tired of how the other parents then perceive me.

I am tired of being on the brink of financial ruin in order to keep my kid healthy and I am really tired of the US healthcare system. Who knew prevention was a 4 letter word?

I am tired of beeps, alarms, and wonky numbers. And I am tired of not being able to fix it.

I am tired of type 2s thinking they are the same as type 1s. And I am tired of parents who freak out when their kid sneezes or falls down thinking they know how I feel.

And as tired as I am of fighting for a cure, that cure is the only thing that will eliminate the other things I am tired of.

So, I will keep fighting.

Thank you to all who have donated to our team. Beat the Bridge is Sunday and it’s looking like it might be sunny!

Wednesday, May 6, 2009

More than martial arts learned at ACMMA

Monday is not usually a karate day so I thought that was why Sáin was so quiet after class. My dad mentioned that Master Dye had talked to the students after class but things get hectic when the kids get home so I didn’t really get to hear what they talked about.

The evening went on and Sáin was still quiet.

Just before bed she stopped Aidan in the hallway. “Promise me you will never play the choking game – okay?” He promised but didn’t really understand what he was promising. Tears filled Sáin’s eyes and I knew it was time to talk.

We talked for a good hour about the choking game, peer pressure and how one bad decision can do a lot of damage. Aidan understood some but Sáin took it all in. Some things are tough to talk about but those tough things are the most important. Please read this story and talk to your kids!

Thank you Master Dye, Jennifer, Chris and everyone at ACMMA for keeping my kids safe in so many ways!