We are writing this to first let off a little frustration and also to help people help us. This is not easy to say or ask and we know everyone supports and loves us and will understand where we are coming from... So thank you in advance...
I think that there are a lot of people out there who seem to think that since Elsie is doing so well and is a healthy happy baby girl! People seem to think they can offer Elsie food (of any variety) without asking if its okay to do so first. Yes it may be true that a tiny bite of something isn't going to affect her sugar - BUT when that tiny bite is a spoonful of chocolate or something that is ALL sugar even the smallest bite will affect her. There are certain things that she eats that take longer to affect sugar but almost EVERYTHING has carbs and we have to account for all the carbs she eats in order to keep her glucose levels as well maintained as we do.
I guess what we are saying is that as I hope you would ANY child you come in contact with, ASK their parents before feeding them. You never know what allergies kids may have or if they have to count carbs too!! I would never give a child food without making sure it was okay with mom/dad first. I hope our friends and family can do the same.
The unfortunate thing with diabetes is that we HAVE to measure everything Elsie eats - we carry measuring cups in our diaper bag for goodness sakes!! For the record there is NOTHING Elsie cannot eat, but we HAVE to know how many carbs are in whatever it is that she eats. This is honestly the most stressful part of diabetes and being a parent of one. We have become fairly good at memorizing the carb count in foods that Elsie frequently eats and so a lot of times if someone asks us if she can have something 9 times out of 10 we'll know how much of that is how many carbs etc...
There are also times as mothers that we generally do NOT want Elsie to eat things. At 8:00pm or later SUGAR of any form is not something we are OK with her eating, its bedtime and its not necessary. I understand that people like to treat Elsie and I want nothing more than for you to do so! BUT ask first is all we are saying.
This is NO way is meant to anyone in particular - this has happened on SO many occasions that we felt it was necessary to say something HOPING all those important to us read this and will take note.
This disease IS serious. I know that many may feel that its NOT life threatening and its MANAGEABLE, which it is. But counting carbs and giving insulin is how we are managing this. its not an easy thing and it takes a lot of trial and error and all those errors can get scary. If we ever miscalculate carbs and cover for too many we can cause Elsie to get a very low sugar. Elsie is TOO young to tell us that her sugar is dropping fast (someday she'll be able to feel that change and notify us herself) now we have to HOPE that this DEXCOM will alert us when she's falling fast and so far we've been able to.
Our job as her parents right now is to avoid lows and avoid ketones. The lows we are avoiding would be a low where Elsie lost consciousness and/or had a seizure... We NEVER want to experience this and hopefully never will!! And ketones are a result of high blood sugar without adequate insulin coverage - this is what caused her to be in Diabetic Ketoacidosis(DKA). This is how she got diagnosed. From any diabetic we've ever talked to DKA is the "worst feeling in the world" and we are thankful that Elsie will NOT remember this feeling and we are hopeful she never will feel it again!!
Thank you for listening and I hope this gives you all a little more insight into this awful disease that we are fighting on a daily basis...
Take care,
McKenzie, Sarah & Elsie
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