Type 1 Dibetes diagnosis

Hi Everyone,

So, I held true to my word and am posting this with much less time in between my last few posts.  I thought it would be helpful for our family and friends to hear from us an update on Gracie, our new diagnosis of type 1 diabetes, and how life is changing.

Here are some pieces of information we are learning so far. First, I had no idea what to expect with a diagnosis of this sort. We were completely thrown for a loop when this happened. Second, in our immediate family or extended we have no one who has this diagnosis. I had no fear that I had stayed up late in the night googling related to "this" and the symptoms we were experiencing. Most of which are only in hind sight that we can see them. I had no previous experience with "this" in any way shape or form and I certainly had not gone through this myself. To say that we were unprepared in the understanding of diabetes is accurate.

I have noticed however a lot of hype, and rightfully so, about diabetes in recent years. I have seen it on magazine covers, pamphlets at the doctors office and numerous advertisements on the web. Much of what I read or noticed, unknown to me, was related to type 2 diabetes. Not type 1. They are two different ball games. From what we are finding out there are some similarities, and some differences.

Here is some of what we have learned.

Type 1 is an autoimmune disease. Basically her pancreas stopped producing insulin. Gracie will be checked on a regular basis for any other autoimmune diseases that are related and tend to be more likely in children with a type 1 diabetes diagnosis. We will have 3 month checks  through out her adolescent years for her to be monitored by her pediatric endocrinologist down at St. Paul Children's hospital, or any other children's hospital that we live near in the future. Our medical facility here in our community has a great diabetes team, but they only fill in when needed for juvenile cases instead of being their primary diabetes care team. We have participated in their support groups and that has been very helpful.

Insulin is necessary and is considered by some, not all, in the medical field to be a form of life support. I say that somewhat loosely as Eric reminded me that we would have to really define the term life support. But in terms of if Gracie does not get her insulin and in the right doses, yes, she could lose her life. This will be a life long disease that we are now in the midst of hopefully training her how to take good care of monitoring, treating, and being ever vigilant to making sure she is diligent on her blood glucose checks. Yes, being a helicopter parent to Gracie as a  type 1 diabetic is ok as her life is dependent on it. We had a grim reminder of this as we were having a garage sale the other day and a lady came and started sharing with us that she was a recent widow to a man who died from complications related to diabetes. She let us know that he did not manage it well and after loosing some limbs, he then lost his life. As much as we only want to focus on the positive things in life, this is a reality for Gracie.

Type 1 is a daily, vacation free, lifelong way of living with consequences if not managed well. We do many glucose checks through out the day, especially now as we are so soon into the diagnoses. If Gracie's levels get to high for a prolonged period of time she could head back in to Diabetic Ketoacidoses, we never want to go through that again and I posted about that in my last post so I won't go into detail here. If her levels get too low with out being brought correction in a sufficient amount of time she could also head into hypoglycemia. Both could either brain damaging or deadly. Gracie gets at least 5 shots a day, sometimes more. We are constantly doing corrections up or down, depending on where her levels are. I think in some ways this won't seem so time consuming in the future. However, in some ways it will always take more time than ever before to eat a meal, consider a snack, and find the right kind of correction to either correct high blood sugar or low blood sugar.

Type 1 is not caused by anything Gracie specifically did, nor is it curable. Gracie wasn't eating too much sweets or not active enough. That is related to type 2 diabetes which, like I said, is similar in some respects but very different in others. Type 2 is the more common type that we are hearing more about in recent days. Diabetes, both types, have been around for years. But until within the last 80 years there was nothing to manage it. If someone was diagnosed with type 1 diabetes it was a death sentence. Much like some cancers in children nowadays, they were given anywhere from 3 months to two years to live. We have come a long way in our medical technology and as Gracie's Mom, I am so grateful. As much as there are certain parts of the medical world that are easy to rag on I count my blessing that we are not writing to you counting down the days. We are writing this very hopeful that with proper knowledge and training Gracie will live a full and active life, serving the Lord and others.

From what we have heard the hardest part is yet to come. The medical personnel that we have been working with all have agreed (so far) that the teenage years are the hardest. Teen years are hard for any teenager, but add on top of it something like diabetes (or any other chronic condition for that matter) and it adds a whole new dynamic. As different preferences and a stronger independence becomes Gracie's way of life while she is figuring out who she is, what she wants in life, and that others' opinions really matter (even though as an adult we know we have to mortify this fear of man), we can only hope that early on in this diagnosis we have instilled in her how to take proper care of herself as a diabetic. She has already experienced a little of the opinions of others and the misunderstandings of how this can put a new spin on life. She has been told by some of her peers, one being a sibling, that they won't share something with her because they "don't want to catch diabetes". Gracie being Gracie seemed to take this in stride and it did not seem to affect her. Hopefully she will stay innocent in this arena a lot longer! By the way I don't at all blame the ones who said this either. I do not believe for a second it was done maliciously, just ignorantly.

I hope this helps as far as information goes. I am sure over the next few years we will learn much more and maybe have some clarifications of things that we have believed wrongly in this. As far as how Gracie is doing, she is doing really well. Her cheeks are filling out as she had been losing weight before being diagnosed. She is transitioning to her shots, not the stomach ones yet, but she will get there. Her evening butt shots, as her brothers love to giggle about and try to pry the door open to watch, are still her least favorite. She has narrowed down the time it takes to get this done from about a half hour to maybe 10 minutes time! Yay for Mom and Dad as this is the hardest time for us to be patient and understanding when at this point in the day all we want is for the kids to go to bed so we can relax!

Here are some pictures beautiful Gracie before and after. This first one is of her when she was first brought in and being loaded into the ambulance to head down to the St. Paul Children's.

 Here she is in the PICU starting to turn the corner.

 Here she is after receiving her first dose of insulin, looking a little better already. The picture above and this one are out of order in terms of when they took place, sorry.

 Here is Gracie in the PICU after she had gotten out of the "red" and was heading into the clear. She was only allowed to eat ice chips for two days, and that only after the second day in there. She was very excited!

 Here is a recent picture of Gracie and Rufus. Rufus is a bear that is given to juvenile diabetic patients for comfort and learning how to care for diabetes. He has designated shot spots, including in his rear, for Gracie to use old syringes and practice on.

I hope this was helpful.

Love,
Miriam