Endo Appointment #1

 *One day I’ll make this all pretty. For now here it is totally raw.  🙂

  January 18, 2011 was our first official “regular” appointment with our endocrinologist.  Naomi was given the A1C test and we got 7.4%.   The doctor was happy with that number, I was glad it was not above 8% (my own personal would have  freaked  number)  but I was also surprised that the doctors goal isn’t like 5%-6%. I have so much to learn. I guess most doctors aim to have school aged children between 7%-8%, so while she would prefer us to be closer to the 7%, 7.4% for being so recently diagnosed is doing good.  Our doctor said that our target A1C number will go down as Naomi ages.   I’m hoping for a 6.5%-7% in April 2011, because that’s the way I roll.  🙂

   Our doctor and I question Naomi’s blood sugar levels while she sleeps.  Going low during rest is really scary, sometimes  diabetics don’t wake up if they go to low.  For the first month after diagnosis I checked her twice a night (2am &4am).  I’ve checked her nightly at 2am until just a few days ago when I started to add back the 4am check. This additional 4am check will continue until the doctor has had a chance to review the numbers for an extended period of time – likely when we go to get a CGM trial started in mid Feb.  Our doctor suggested and I agree with her that a Continuous Glucose Monitor is something we need to consider.  A CGM would ring an alarm if Naomi is having a continuous drop or extreme high and if it reaches a certain point where attention is necessary to address whatever is going on.  A CGM would help me to get some rest on a more regular basis. I would still be getting up at night to check on our little darling but for the most part I would be checking the numbers on her receiver rather than pricking her finger multiple times a night. We would also be able to get a better picture of how Naomi’s blood glucose levels are throughout her day/night so with time we could have better control overall.  Yesterday evening Naomi went down to 73 and then swung high to 300 after dinner, this was all within two hours.  I did not give her extra carbs to cover the low, she just ate the simple carbs that were part of her dinner first.  Sometimes she feels her lows coming on and she’ll have the symptoms of a low at a much higher bg level. For Naomi when her bg goes below 80 it seems as though her ability to recognize her own symptoms goes out the window, so maybe the connection to her brain is already being affected? I don’t know.   There are a few downsides of a CGM. One big bummer is that there is a sensor  Naomi would wear, yes actually something poking in her at all times and she would carry the deck of cards sized receiver around with her as well.  A second big bummer is the additional cost.  Monthly expenses for T1D management is crazy high and just the base monthly cost for maintaining the CGM is an additional $90.00.

  The insulin pump is next on the horizon.  If Naomi got an insulin pump she would no longer need to have multiple daily injections. As of today she gets 1 injection of insulin in the morning and two prior to dinner.  Having a pump would also allow her to eat more freely, the amount and time of day would not have to be so rigidly scheduled like they are now.   Right now Naomi has to have breakfast at 7:40am, snack at 10am, lunch at 12noon, snack at 3pm, dinner at 6pm and snack at 8:15. 15 carb snacks, 35-40 carb meals. The time we can wiggle by no more than 15 minutes and the carbs, no more/less than 5. The drawback is that getting used to the pump and all the changes  it will have for us takes a few months of getting used to. My understanding is that we would be back to nightly calls to the doctor etc…which isn’t a big deal to call but we don’t call to just chit chat ..ya know there’s a reason when the doctor wants to have you call every night when they are in the middle of living their own private lives.  We’re not just talking about the weather forecast or the last person kicked off the Biggest Loser, it’s stressful plan of action details.  Our doctor said in many ways it’s like being diagnosed all over again and we’ll know when we’re ready for that. HA!  I look at it this way, it will surly be a big change and challenge to bring on however the emotional shock that comes with the diagnosis won’t be there. If we have survived the diagnosis, getting through Halloween, Thanksgiving, Christmas, and pneumonia all within the first two months since dx day then…. we can handle moving to the pump.  I think I”m still alive, right, I did make it out didn’t I?  🙂  I want the CGM first and then the pump…I think.  We’ll probably want to transition to the pump towards the end of summer so she can have that going when school starts.

Of course…..we keep in mind we move at Naomi’s pace, she has to be somewhat ready for the changes. It’s Naomi’s body and Naomi’s life, not ours. Will she ever really want to wear a sensor under her clothes, how about the pump? Will she even consider having at tube for the pump, if not that leaves us to consider one pump.  Now….how do I feel about my daughter sporting a CGM sensor/receiver and the pump and it’s whirlygig apparati? I think it’s totally lame and I really hope for a cure or something seemingly similar in her active lifetime


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