Wednesday, March 31, 2010

How did I get here?

I took a drive this morning. I dropped my sweet girls off at the PreK / K school they attend. I then came home, dug up a social security card, birth certificate, vaccination records, reference letters, my driver's license and the 22 page booklet I had to fill out. I walked up the street and handed all of these things over to the office administrator at the elementary school. Ms. J got registered for 1st grade this morning. I am so excited for her, yet I can't figure out how she got to this point - wasn't it just yesterday that she was that sweet little babe that we so carefully drove home with from the hospital? She is funny and smart and reading on a 2nd grade level (I think the 7 kids in her kindygarten class has been a HUGE benefit). She loves school, "being crafty" and anything to do with dolphins. She would wear a sundress every day if I'd let her and she may have quite a future as a diplomat.

I have already requested to meet with the school nurse in July to review our 504 plan. I am going to be a regular fixture at that school for the foreseeable future, they might as well get to know me now. We've already done this, now it's just on a bigger scale.....we'll make it, right? This has me more nervous that the first day I went back to work after having her. I pity the fool that messes with my baby...teachers, school nurse, principals and office staff consider yourselves warned.

Sunday, March 28, 2010

Do you ever want to just hide?

I say this in jest - well kind of. We all have our trials and tribulations regardless of what our lives are like. Ours is a challenge on any given day - as is pretty much everyone in a T1 household. I am the minority in my house, to my kids I'm the weird one because I'm not poking my fingers, taking shots and checking for ketones when I pee. For them, I am SO grateful they will have each other for their reality check on what it's like to live with T1 - I am NOT grateful that they both have T1, but if one thing could make their lives easier, I think living in a house where they're not the only one might actually benefit them. Ms. J has become quite the T1 Yoda Jedi Master - she is not afraid to talk to newly diagnosed kids and tell them how important it is that they listen to their parents and eat what they are given and to learn to listen to their bodies. She can tell by looking at Little G if she's high or low and she wakes up at night if she hears Little G making any kind of noise - she can fly down their hallway faster than a speeding bullet to get to us if she thinks anything is wrong. She will then run right back down the hall to sit with her sister while we grab the tester and fast acting sugar.
I was having a bout with insomnia last night....Wayne was snoring and I was on the sofa, watching SNL, Cold Case, CSI Miami -all the shows that will normally cause me to fall asleep sitting up. I played solitaire, surfed the net for 504 plan information and then turned to my DMom Bloggers, because I wanted to "check in" and make sure that everyone's broods were okay. But EVERYONE in my little D-Mom blogworld got a slap in the face yesterday....or have it coming when they check in the next time. There is a family out there that lost their 14 year old son to T1. Mom went in to wake him up and he had passed during the night. I cried as I read everyone's reactions, I cried for his Mom and Dad and his siblings. I cried for the parent or the spouse of someone with T1 - because I'm pretty certain they are/were scared reading this. I know that when I got done crying and praying for them and for us (collectively "us" as the parents of T1 kids or the spouse of a T1). I went down the hall, testers and juice in hand....and checked my girls blood sugars and gave Ms. J some juice and held Little G until she went back to sleep - or maybe until I was ready to let go of her, I'm just sayin'. I crawled into bed, next to that snoring bear, and wrapped my arms around him a little tighter and felt a few more tears roll down my cheek because all I wanted to do was hide from this reality. But then I fell asleep and when I woke up this morning to the giggly voices coming up the hall to see us, I knew that there is no place I would rather be.
We need the cure, we DESERVE the cure. No Mom or Dad or Husband or Wife should have to worry that T1 is going to take their loved one in the middle of the night. To my fellow soldiers in this war, I wish you great numbers, hugs and the strength we need to carry on.

Wednesday, March 10, 2010

Not Impressed

Okay, so I have a PILE of posts that I need to get up but today I have to vent.....I am so very frustrated with the lows we've been seeing with Ms. J over the last 48 hours. On top of that, I broke down and called Children's (which I don't do unless we're at a complete loss because it ALWAYS adds to my frustration). Today didn't disappoint in that realm, I called at 2pm, left a message for an advice nurse, with the details, my call back number and waited. And waited. And waited. TWO hours later, I get a call and upon introducing herself, asks who she's speaking with and how she can help me.....really? So why didn't I just leave a message with my phone number and ask you to call me back. I bit my tongue, answered her and then went on to explain the lows, that we haven't changed anything about our routine, other than for the past 2 weeks we've been giving her shots before she eats instead of afterwards. I'm waiting to hear the pearls of wisdom about what might be causing her lows, ANY questions at all....instead, she tells me that I need to fax in her logs and write LOWS on the top so they will make them a priority. NO helpful hints, so suggestions, NADA. Exactly why do they call them educators, advice nurses or professionals? I can wing this with the best of them without the nursing degree and the high paying job. I cannot say it any nicer, I am SO unhappy with the lack of care and concern that is presented whenever I do actually call for help with a high or a low. They really should call it a "helpless" center.

I continue to compare our situation here to the care we received when we lived in Sacramento. Our endocrinologists (the 3 in the practice) were fantastic and always greeted us warmly. Whenever we called with a question or a concern we didn't have to wait 2 HOURS for a call back, the longest ever was 20 minutes. Our endo called us twice the first night we took Ms. J home from the hospital, even though he'd just seen her at her first appointment that afternoon. We had 2 calls the first week from the educator and one of the nutritionists emailed us a shopping list. I realize that Dallas is bigger than Sacramento, but the way this system here is set up is a joke and a complete disservice to the patients.

Children's does not account for anything out of the ordinary they will fit you -the square peg -into their round girls deserve better than this. As their mom & dad we deserve better than this.

I'm wiping my tears of frustration off my hot angry cheeks now and going home.