Appointment One - Meeting Lily's Doctor

We met Lily's endocrinologist yesterday. This will be her diabetes specialist for her time at CHEO. It went really well honestly. It was mostly an appointment for us to ask him questions and for us to look at her trends and adjust her ratios with him. I was really nervous that we would be scolded for adjusting her ratios ourselves without discussing it with our team every time, but to my delight it was encouraged and praised. They are all so kind in the diabetes clinic and make sure to tell us that we are doing a good job and praise us for how quickly we took this illness on and adjusted our lives to care for her as best as possible.

Lily is of course not the easiest child to get to sit still during appointments with the doctors, and this continues to be something that stresses me out leading up to the appointments, so I am grateful that the clinic allowed both parents and her Dad's spouse to come into the appointment. Three adults taking on one Lily seems like it would be enough, but man that kid has energy!! She was climbing all over me as per usual (shout out to all the parents that double as play structures for their children), making a mess with her snack all over the room, amazed with the coloured shapes on the walls and running back and forth to all her favourite adults.

They tested her A1C and she was a little high, sitting at 12%. This means that her average blood sugar is above the ideal range and we were given a goal of getting it to 10% by her next appointment. We also discussed the reality of having her within range majority of the time at her age, and adjusted our expectations from having her between 4-8 to 4-10 giving us some more wiggle room to play with. They checked her thyroid levels, which I need to do some research on because I think I had someone throwing their body against mine giggling when this was brought up! And lastly we adjusted her ratios and asked the questions that google shouldn't answer for us.

I know I talk about how lonely this all is for me at times, but I am so grateful that her Dad and I are able to tackle these types of things together (plus his amazing spouse of course). I know that I would handle her illness on my own if I had to, but I think it would consume me. I have people to talk to about adjusting her ratios, about how it can drive you insane when her levels are out of whack and you don't understand why, and all of the other joys of having a baby with diabetes. We have the most incredible team at the hospital and we do our best to be a team at home for her.

We see her doctor again in three months to test her levels again and discuss how her ratios are, if we have any concerns and to plan for the next three months. We discussed the insulin pump and when we can apply for one, which kind we think would be best and even discussed the possibility of trying to apply early due to how young she is and how difficult her levels can be to manage at times. If we were to get the pump, we would no longer need to be giving her six injections a day. We would move the pump site every three days, continue to move her Dexcom every ten days and unless we are in an emergency and need to check her BG levels, we won't be poking her daily any more. Just the thought of it being a possibility makes me so happy. So much less pain for her, possibly more maintained levels and a better feeling baby.

I am hopeful that this illness will only get easier to manage for her, and she will be able to live a relatively 'normal' (whatever that means) life. I never could have imagined my child having a life-long chronic illness, but it's the cards that she was dealt and we will do our best to make it easy on her. She deserves the absolute best, and she will get it.

Xoxo T1D Mommy