Sugar Lily

I cannot begin to write all the life we have lived in the past week.

First off, if you don't know what Type 1 (juvenile) diabetes is, go to:

http://www.diabetes.org/type-1-diabetes.jsp
or
http://www.jdrf.org/index.cfm?page_id=103438

LeAnn and I noticed a change in Lily that started shortly after Christmas. At first it seemed that she was moody and pouty. We attributed that to a couple of causes, namely the new baby in the house and the fact that she hadn't seen her "kids" at church in over a month. Then mealtime became a battle as Lily wanted to drink constantly. She would get us up five or six times a night to use the bathroom.

LeAnn and I were in the process of trying to figure out what was going on when I came down with a stomach "bug", which I still haven't gotten rid of after two weeks. We thought at the time Lily had something similar. Lily had started to look and feel a little thin to us, and we thought she was just flushing out all her nutrients with constant drinking.

Owen had his appointment with the pediatrician on January 22, and LeAnn asked the doctor if she should be worried about Lily. As Lily was still in the healthy range (barely) for height and weight, Dr. Hamel said it was probably a stage and not to worry about it.

Lily became more and more listless. Her appetite would vary from ravenous to none. She lost two or three more pounds, and LeAnn was getting upset trying to figure out what was happening. Lily's tongue was coated and dry, and she would talk with a lisp. LeAnn made an appointment with the pediatrician for Friday, Feb. 1st. I promised to go to an urgent care or my doctor that afternoon to try to figure out my stuff.

As soon as the doctor examined Lily and performed the urine test, she took LeAnn in the next room. Dr. Hamel told LeAnn that Lily had Type 1 diabetes and would need a stay of several days in the hospital. LeAnn said they essentially shut down the office as they got Lily and LeAnn ready to go to the hospital. LeAnn called me (roughly 11:45 AM) and told me what was going on. I was already in the exam room of the urgent care, getting ready to have blood tests done. LeAnn, Lily and Owen went on to Mission Hospital.

By the time I got out of the stupid urgent care, it was a little after 2:00. They already had Lily on the pediatric care floor, hooked up to an IV. Her blood sugar was over 800, and she was far along into ketoacidosis.

I pray you will never have to walk into a hospital room to see your three (almost four) year old lying in the bed, hollow eyed, sunken face, white, listless, hooked up to an IV.

The good news is that diabetes is a manageable disease. I can't speak highly enough of the staff of Mission Hospital and Asheville Endocrinology. They took care of Lily quickly, and began to educate LeAnn and I on our new responsibilities. 95% of the care for a child with diabetes lies with the family. We are her pancreas now, and we have to teach her how to take care of herself as she grows older. Mary Beth, our diabetes educator, got us pointed on the path of how to feed and care for our little girl.

As I write this on Wednesday, Feb. 6th, I can hear Lily upstairs dancing and playing as her Mommy washes dishes. God gave our Lily back to us, and has provided us with the means, technology, and professionals to keep her.

We will stay in constant contact with Dr. Speed over the next few weeks as we all try to find Lily's balance of diet and insulin. We are on a current regimen of roughly three shots a day (quite a bit more right now until we get her glucose into the proper range). We call the glucose tests "checks" and the shots "pointy's". We told Lily that we either had to take the pole (IV) or the pointy's home with us to get the medicine into Lily, and she chose the pointy's.

Lily is doing ok with her treatment. She cries every time. But she also will hold out the finger to be pricked as she cries. She dislikes the pointy the most. I am sure she will grow more resistant before she finally accepts things.

LeAnn and I have so much to be thankful for right now. We are thankful that she is well, that they caught it in time. We are thankful that we live in a time and with technology that will help us give her a full and mostly normal life. We are thankful for the medical professionals who have cared for us. We are thankful for our families who love and support us. We are thankful that we are in the position to provide the care Lily needs.

We have always been proud that God trusted us with Lily. We still are.

The LORD gave and the LORD has taken away. Blessed be the name of the LORD. Job 1:21