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Sunday, June 28, 2009

I just don't know how to make it work...

I found out some sad news today. In August, the church we've been going to for the last 7 years is moving their 6:00 pm service to 5:00 pm. Which, for most people, is no big deal. For us it means we'll probably have to find a new church.

With the insulin Elise is on, neither of the other two services (9:00 am, 10:45 am) work for us. Elise gets her shot and eats breakfast around 8:20. We've tried making it to the early service and we could never get there before 9:15, and we're usually so frazzled and stressed out, it was hard to even focus on what the pastor was saying when we actually sat down.

The 10:45 doesn't work because Elise is on NPH, which peaks at around noon. The service ends about 12:15... most days. The other reason this service doesn't work is because I test Elise's BG around 10:30/10:45 and figure out her snack based on that number. This is NOT something I feel comfortable letting her Sonshine Pal do.

The 5:00 won't work because that is the time Elise eats her dinner. Our church will be doing a community meal after the 5:00 service (around 6:15), and Fred and I talked about seeing if we could move her dinner to 6:00 (just leave the service a bit early). But that doesn't work because it puts it too close to her bed time.

I just don't know what to do. Before Elise was born, we were very involved in our church, and know so many people there. It would be so hard to leave. Plus, we have been very blessed to find two people that stay with Elise one-on-one in the nursery (her Sonshine Pals; they alternate weeks). One is a very dear friend of ours, and the other is a nurse. Without them, we wouldn't be able to leave Elise in childcare at church.

People say that we shouldn't let this disease run our life, but our day with Elise is so structured (between meals, snacks, naps and bed time), it's almost impossible to change things up too much.

On top of this awful news, I have a feeling something is up with Elise. She had a total meltdown in the nursery tonight, and we just checked her BG a few minutes ago it was 315 with .4 ketones. She just had a vaccination on Thursday, could this be a delayed reaction? Something else completely?

Sigh, I hate this disease.

5 comments:

  1. You are doing such a GREAT job with Elise ! The structure to her daily routine IS very important and if it gets off, it can screw things up for a bit. With Jada- she's our baby- the last one and because of that, our routine is more relaxed, very different than that of our first born. I guess I would encourage you to give the 6:00 service a try for a while- see how it goes. You have so much established there already- relationships not only vital to you and Fred, but Elise as well. Taking her some where else would mean educating her care givers who don't have as much invested in her as the ones who already do. We've been at 3 different churches since Jada was diagnosed (Houston, Tulsa and here) and it was pretty nerve racking to leave her with a teacher who may or may not understand what you've just told them. We never had any problems, but I was on edge through the service, especially if she had a new teacher.
    I hope Miss Elise is feeling better and not getting sick! I don't know if those immunizations would cause ketones or not. However, if she's running a fever from the immunizations, I could see that causing some ketones. My kids at times had reactions as delayed as 10 days after the shot!
    Lots of Alaska (((HUGS))) and prayers Joanne!

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  2. Just a thought...BEAR with me...

    Would you consider Novolog/Humalog and Lantus/Levimir...aka...MDI (multiple daily injections)

    Yes, it means 4 shots a day. BUT, there is room for a little more flexibility in your schedule.

    After 4 years of diabetes, I agree that there ARE some things we must work around to fit diabetes into our lives. That being said, switching things up to give you a little more flexibility in your daily schedule is possible. But...it requires change.

    And change is scary. I know.

    Addy came home from the hospital on Regular/NPH. It was fine. Very rigid, very strict. But fine. She was also my only child. I don't know how we would have been able to manage another baby (I was 20 weeks preggo when she was dx) AND maintain that strict schedule.

    Enter Novolog/Lantus. Better. In the beginning, there was still quite a bit of regiment, but, after we moved to AZ, we learned that is WAS possible to give ourselves a little more flexibility.

    From there, we moved to the pump. Something you might also consider...(YYYEEESSSS, little people can pump!)...The pump has allowed us the most freedom of all. It has literally revolutionized this journey. It has been amazing.

    Diabetes isn't worth giving up your church family.

    Ask yourself something...

    If you can't flex for ONE hour ONCE a week, is it REALLY realistic to do this forever?

    So, when do you consider a change?

    I'm here every step of the way.

    You can do this.

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  3. I am not an expert, therefore I cannot give advice. All I can do is offer prayer for your family. I would hope that you would not be hasty in giving up your church. Helpful relationships are difficult to come by. Not that people do not care or do not want to help....they do. However, often fear of the unknown gets in the way. You are a valiant mother.

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  4. :( Your commenters before me have much better advice than i could offer. . .know I am thinking about you

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  5. I agree with everything Wendy said, especially the part about not being able to be flexible even one hour one day a week. Riley came home on Lantus/NovoLog. There was a routine to it, but not nearly like the one you're on. There was a way to be flexible with it (Lantus is not supposed to peak.)

    5 months after diagnosis at age 3) he was put on a pump and it has literaly been a God-send. I'm not trying to push a pump on you. Some people are just not ready for that step. But, I will give you my opinion. I believe the younger the child the more they need a pump. It can give such tiny, tiny amounts of insulin that Elise needs. (Riley's pump gives as small a basal as 0.025 units per hour and 0.05 units of insulin for a bolus.) Just food for thought.

    I'm hoping something can be done to help so you don't feel like you have to change churches.

    ReplyDelete

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