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08 April 2012

Happy Easter Mom

The video basically speaks for itself. Happy Easter to all who celebrate, and happy Sunday to those of other faiths.

And now, to brag about my kids...(the fact that I recorded myself, and went through with publishing, speaks to the greatness of this brag.)

The kids contributed to each other's baskets this year, and Brother Bear also put together the coolest scavenger hunt for Miss N to find her basket. Seriously, he utilized every level of our town house and most of the rooms. He's brilliant with this stuff! If you ever need a great scavenger hunt for your kids birthday party, you should hire him.

Taking a Plunge & Doing the Unthinkable

     Several things happened over the last week. Miss N's new pump failed in her first week of pumping. Nope, not joking. It didn't record a bolus, but she very clearly receive it, and more. In less than 2 hours from lunch she went low, disconnected for over 2 hours, & only came up to 102. Unbelievable.
There's the sleeping through a night check alarm (far too common lately)I blogged about. I still shudder at finally waking to blaring alarms, a BG of 59 and stone cold, dead weight daughter. Could not budge, wake, get her to drink in her sleep, or even pry her lips open for cake gel. 
     You know how people talk with their hands? I also think with my hands, meaning one hand was in her kit rummaging for glucagon and cell phone in the dark, the other touching and attempting to open her lips. Poor kid, she jerked, squealed in disorientation, and finally grabbed and sucked down two juices without word. Thank. God. 
     After that, I helped troubleshoot another two lows during the short half day, but it's the after school that kills me. Sitting in the car, I just had a feeling. Momtuition, you know? I called her even though volleyball had just started 15 minutes before. N answered on first ring, and sounded down right confuzzled. Why was she sitting on the gym floor, oblivious to careening volleyballs and shrieking sixth grade friends? Probably the 58 on her meter, followed by juice, fruit strips and... dog nab it, another 59. When I say out of it, I mean walking in circles, repeating half sentences, and the teacher turned full time pancreas (me) suggesting we leave her backpack and homework at school. 
I promptly emailed her PA at the endo center, but apparently her numbers look grand - no changes. Are you kidding me?! I've suspended her pump multiple times to deal with lows. They persist, proving hard to treat. How is this grand? 
So despite the hate mail I continue to receive for my apparent audacity at fund raising for medical expenses, we're getting the CGM, and we're getting it now. Fund raiser is only half way there, but I'd rather not eat in addition to not sleeping myself than risk the unthinkable. That's 36 lows in the first week and two days of pumping. They haven't been the lowest of the lows, but they've proved the most symptomatic and scary. 
Now to figure out how we're going to hear those darn alarms. It's no longer possible to purchase a stand alone Guardian. If we want a stand alone, it's MySentry or nothing. That's a bittersweet note.  Guess I need to up that fund raising goal, or figure out how to work multiple jobs at one time. 

05 April 2012

Misty Eyed Muse

     Last night I was up more than half of the night. I'd slept through an  alarm and woke at 2:30, angry at myself for oversleeping the first night alarm by an hour. I tested and found N's glucose level at 59. It was nearly impossible to wake her and get her to drink juice - scary in an of itself. I waited the requisite 15 minutes, retested, and she was still low so we retreated. We repeated this process over the next 90+ minutes. Juice, chocolate milk, more juice... I'm surprised she doesn't vomit on me when this happens. Each time she would go back to sleep, while I tried to keep my eyes open with facebook and cleaning - never moving far from her side. Finally, at 4:30 we got a reading of 111, and while lower than I'd like for a night time reading, acceptable considering my realization that wake up time was only 2 hours away. Of course, I slept through that, waking the kids with 20 minutes to ready themselves for the day.
     This could not have occurred on a worse day. It's only our second day back from Spring Break. Yesterday the kids arrived late because we had to change the insertion site for her pump. It had started peeling off, crazy since we'd just hooked Miss N up to the replacement pump we received the day before. She finished it off by day's end accidentally ripping the site out with her arm tangled  in tubing. The day before that, the original pump failed to record a bolus but clearly gave that insulin and more. Miss N kept dropping low, then lower, and still lower until I called it in.
     Meanwhile, Brother Bear appears sullen, angry, left out, unhappy. He routinely caves himself in his room, expressing distaste for the healthy food varieties that adorn our plates and trigger sensory overload nightmares for his taste buds. I know, internally, that it's normal for him to resent the time suck D represents in our lives at the moment, and even though it won't always be that way, right now (for whatever reason) it is. Yes saline start and pump start consumed spring break. Yes, 26 lows in four days is a lot, and it's not fair that activities were rescheduled then ultimately cancelled due to the perseverance of low blood sugars and potential for more if we'd gone through with our plans.
     It's understandable. That doesn't make being raged at bearable. It doesn't make him feel any better, and more often than not, it makes her feel worse. As if her brother blames her and not this disease.
     I want to rage at the world, scream out loud that I hate diabetes. Four, five months ago, it wasn't this hard, but since then she's been growing, maturing. I hit my sleep deprivation limit, and simultaneously hit the bottom of my wallet. I'm not the first parent to lose a job when my kids were sick or injured, and I'm certainly not going to be the last D Momma to lose her job, only to later think it's the best that could have happened at the time. All I know right now is that I want to scream, cry, take a break, and then reality hits me - some day, I can do just that. But not Miss N, not anyone with type one.
     I know what we need to help us through this difficult time. I just don't know how to make it happen. Not any of it. I need sleep (good luck with that.) We need the CGM (we halted at 46% two weeks ago an haven't budged since.) I need a new outlook, perspective, attitude - whatever you want to call it. (That's the hardest, yet. This disease can take my daughter's life in a heartbeat - just one really low low, combined with me sleeping through that stupid alarm, and she's gone. For some, it seems a remote possibility, but with all her night time lows that do not wake her up? I can't live with that. (Note to endos, not that they're reading or ever will read this - pleases stop telling us new parents that night time lows will wake our children - they do not!)
     Yes, I need to build a new perspective. I want to celebrate all that my children are and have overcome. They are truly amazing, inspiring, incredible young adults in training. I love them with all of my heart, and my heart aches over all the hurt that fills our home today. But I can't scream - the torrent held back by the choke hold on my throat won't allow it. So I move forward, act as if, misty eyed.
  The muse of inspiration, always at my side, once again helps me process and begin the work of letting go. Perhaps sleep will reset this poor outlook. Oh, and a muse of fundraising - I could use her too.