Wednesday, May 5, 2010

Diabetes 101

We were transferred to the Peds floor Tuesday afternoon and CJ was freed of all her IV/wires YAY!!! It's been a bit of a whirlwind since then with doctors/ dietitians/ nurses/ geneticists etc in and out of the room and with CJ back to her usual happy cheery self it's been hard finding the time to sit down and give updates. We have plowed through many books/pamphlets/and handouts and have each mastered testing her blood sugar and giving insulin. Those of you who are parents, remember the day you brought your first child home and you longed for an instruction booklet to tell you just what you were in for ... well CJ now has about 60 of them! lol I have to say that Eddie has been so strong and such an amazing Daddy I can't thank God enough for giving me such a rock to lean on, he has been there to take the first step time and again and give me the reassurance that I CAN do this. There have been a few tweaks and adjustments made to CJ's meds and there have been both highs and lows while try to determine the best regimen to control the diabetes. We are a bit of a different case since breastfeeding doesn't allow them to measure her intake of carbs and therefor cant calculate the insulin needed to compensate for them quite as easily. She was started with 4 units of Levamir which is a long acting insulin that needs to be given daily. Turns out 4units is just too much for her little body and we had a few scary lows the first day in PEDs but praise God we were able to control them through breastfeeding alone. She is not that comfortable with the sippy cup or bottle so giving juice to bring her out of lows when BFing isn't enough is going to be a challenge all it's own, I'm praying that since her hep-lock was removed last night along with the splint used to keep it positioned she will be feel more comfortable using them. She is also to be given .5units of Novolog (her fast acting insulin) when her blood sugar is about 180, we had a few numbers in the 300s last night but since a low is more dangerous then a high especially at night time hours we didn't adjust anything but starting today she will be given .5units of Levamir before bedtime to avoid that. I know that sounds like a whole lot of gibberish to many (and it certainly would have seemed quite foreign to me a week ago) but God has put some awesome mamas with children diagnosed type 1 who do understand all of this, in my path recently and they have proven to be a wealth of resource and support. We sat down with the Medtronic pump rep yesterday who is actually the brother of Molly (of The Molly Center) and we will most likely be heading in that direction, just awaiting word on how much of the $8,000 pump insurance will cover. Obviously we are a bit overwhelmed by the cost factor of CJ's condition as just 7 out of the 10 RXs we picked up yesterday were $120 ... for a 30 day supply. Not to mention even if the insurance company were to cover %80 of her pump cost that would still leave us with about a grand to pay out of pocket. I am trying ever so hard to keep my faith and remember that the Lord will provide, reciting to myself Proverbs 3:5-6 constantly. The few Sundays before CJ's diagnosis our Pastor had preached on Jobe and I truly believe God made sure that teaching was in my heart going into this, knowing that bad things do happen to good people and that this is not a punishment but simply something He knows we are able to handle. We just ask that you all pray we can keep our faith strong in spite of the roller coaster to come because I am sure that as long as our faith is in Him alone we WILL make it through! I also want to say a big thank you to the "owlies" who have been there to remind me of His teachings and words when things seem so overwhelming, know that you have provided me with more strength through Him then I could ever muster on my own!






  1. Hey it is Jill! I just want to let you know that I am thinking of you. It will get better I promise. It is just a rollercoaster ride right now. Medtronics is amazing with offering payment plans so do not worry about that. Also just so you know the only Prescriptions I get filled every months are Test strips and insulin and syringes if you do shots (we do keep a back up box at home). Lancets last a LONG time, glucagon last until the EXP as long as it is not used. Ketone strips last until the EXP date also. the day we got out of the hospital we had 200.00 worth of prescriptions, but now I spend roughly 20-30 dollars a month just for her prescriptions (test strips we get 400 a month and 2 bottles novolog although she does not even finish 1 bottle a month, we just like back ups) every 3 months I order sensors for her CGMS and pump supplies which yes it is more, but worth it. Try a multiclix lancet device it rocks. If you need one send me your address and i will pop one in the mail for you.
    thinking of you

    Jillian and Loren

  2. Hi Niki, I am the mother of a sweet little princess who was diagnosed with T1D at 9 months-old and started on a pump at 13 months. She is now 5 1/2 and doing very well.

    I'm so sorry about your sweet baby girl! The journey after diagnosis is difficult, (taking her home was the hardest part for me), but in time your family will adjust to this new "normal" and she will thrive.

    I am in touch with a couple of moms who have little ones (around age one) and at least one of them is still breastfeeding (last I heard). I will email her a link to your blog. I have known a few other moms (online) who did continue to breastfeed for some time after diagnosis and it worked for them. That decision will be easier to make after you're home and can really see if, or how much it complicates her numbers. For now, the comfort and convenience for both of you is priceless. :)
    Just FYI, we almost always treated lows with milk when Emma was very young and it worked well. I also kept glucose gel handy for severe lows, she could suck it right out of the tube and you can also put it in a medicine syringe if needed.

    I know you have more than enough info to process right now, but if you have questions or just need an empathetic shoulder to cry on please feel free to email me. nabholmes1[at]
    You will also find a huge support group at in the forums.

    Take care!


  3. thank you Jill, I can't tell you what a blessing you've been :)

    Amy my friend Erin actually pointed me in the direction of your blog and etsy, and inspired me to ask our Endo about the pump. I will most likely be in touch in the next few week for a pouch :) My husband actually showed me CDW and I started an account, have an intro up. Thank you so much for reaching out, it's people like you that remind me it will get easier ... eventually.

  4. Life is delicate, but God is in control and all will be worked out. Just keep the faith. Take a deep breathe and slow down on days that are hardest, as slow as you need to. Get your footing, and step forward again. You are the strongest most beautiful mama I know! I love you and Eddie and the kids!



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I'm a crunchy born again momma living in suburban NJ with my sweet husband and our three little gifts from God.