Wednesday, February 16, 2011

Molly: Our Warrior From Heaven

This is Molly. And this is HER story.

Molly was born a wonderful healthy baby girl. Nothing abnormal, just joy and happiness. Her big sisters were so excited to hold her and the whole family welcomed her with open arms.
(Grandma holding Molly)

About 3 months after she was born she started having problems digesting my breast milk. We switched back and forth between Soy and Milk formula but Milk seemed to go right through here. The Soy would sometimes clog her up and so we had a roller coaster of a time trying to find out how best to feed her. She gained weight and was a big chubby baby. Until she turned a year.
She started to develop later than my other kids. She didn't have a normal crawl. She would swing her legs around and looked like a monkey. Although I knew she could walk if she wanted to, she refrained until she was about 18 months old. We had people telling us that she was looking really thin. Both of my other girls had thinned out when they started getting mobile and I didn't think too much on it. Deep down I WAS starting to worry.
At her 18 month check up we discovered that she was having "failure to thrive". She had only gained 1 lb over the course of 6 months and her head circumference was stagnant. Her PCP decided to take an array of tests. By inspiration he decided to go the extra mile and have a urine sample taken as well. We usually hear back from our Dr. at the end of the day when his appointments are done. My heart skipped a beat when he called that same day around 3pm. I remember hearing "I wish I had better news". He told me that her urine had come back with sugar in it, the lab automatically ran an A1C on her blood work and she was in the 400's and at an 8. They suspected that Molly had diabetes. Before I knew it I was being instructed on how to get Molly up to Primary Children's in Salt Lake City. My life was turned into a blur as I tried to find babysitters, pack and call the family. My husband had just started a new job and had to remain at home so I started on the journey alone. We had a false alarm with one of our other daughters before and so I was trying not to panic.
I pulled into the E.R. at about midnight. My Dad had come with me in order to show me the way to the hospital. There was a lot of miscommunication that night. I don't blame Primary Children's because they have been truely wonderful. But in order to fully comprehend the situation for me I must explain. The ER staff called the endocrinologist on call. She told them to make sure to take another BG (Blood Glucose) on her. It ended up coming back normal and they sent us home. I was a mess! I was calling everyone to tell them it was a false alarm! I called our PCP and he was out of the office. Thank goodness we live in a small town. After my husband heard the panic that I was in he called the Doctor at home. Our Dr. was in shock and called the endocrinologist. Apparently the ER did not have permission to release us, they were supposed to call her back with the results. I ended up checking into a room that afternoon with Molly and our brand new baby, Bethany.
I got settled in and they told me that my husband had to be there to receive instruction so he started the 3 hr drive to Salt Lake. Meanwhile I am talking to Doctors and students and getting an array of answers. Molly has diabetes, no she doesn't, she might have celiac, she definitely has diabetes..... we think. What it came down to was this: we caught her diabetes earlier than most people do. She wasn't so sick that she had to be put on an IV. She actually only needed 3 shots total while we were there. The nurses didn't know what to do with us because we needed a-typical instruction. In the meantime Molly ended up with the best endocrinologist out there and the best digestive doctor as well! We felt so very blessed to have had both of them on call that day. They ended up running a bunch of tests to figure out what was going on with her digestive tract as well. She had very inconclusive answers. 3 days after arriving we were sent home to figure things out.
I need to add that Molly was the BEST patient. She didn't care that they were poking and prodding her. She took it like a champ. It was her for a reason, she could handle it.

(Molly right after we brought her home from Primary Children's)

The next year was full of a lot of appointments. They ran all sorts of tests on her. She had x-rays, ultrasounds, digestive scopes, throat cultures, and a lot of blood tests. She was on pancreatic enzymes for a while but then somehow started producing them on her own. Her test would come back with ALMOST everything accurate. The BEST doctors were scratching their heads. They thought she had Cystic Fibrosis for a while. When we met the pulmonologist he said " Molly, I have heard a lot about you in the halls."

(Molly and Dad asleep after one of her breathing treatments. She had to take a special medication twice a day for 20 minutes each)

Finally after about a year they decided to declare her officially a Type 1 Diabetic. We had been giving her shots more and more over the course of that year because her body was starting to need it. But she was starting to gain weight and they were pleased to see her growing. The hard part about having a toddler with Diabetes is the fluctuation in BG. She spent most of her days up in the 600's, and she was functioning fine. When we would get her down in the 100's her body would freak out, she just wasn't used to being normal. The amounts of insulin she needed were so minute. One grape would shoot her into outer space! She kept getting into the fridge. We tried locking it, that didn't work. We finally moved into the laundry room and put a child safety lock on the door knob. How do you explain to a 3 year old that food can hurt her?
During this time I studied a lot of nutrition. I came to the conclusion that Molly DID have a milk allergy. Even though they couldn't pinpoint what triggered the Diabetes, I believe that it was triggered by the milk allergy. I also learned that 1 tsp full of white flour will raise her Blood Sugar faster that 1 tsp of sugar. It is all about counting carbs. It is amazing how people think that sugar free is okay, but in actuality, they still have carbs! I started to look into more natural ways of eating, for I believed this was the key to helping her feel better. We have tried to stick to the most natural form of foods. We switched to brown rice and wheat pasta. We don't believe that artificial sweeteners like Splenda are good for her so we use honey, agave and natural cane sugar instead.
There was a time when it was looking like we were going to be moving to Belize. We wanted to be able to live off of more raw foods and help Molly in any way we could. It was at this time that her endocrinologist decided it was time to put her on a pump. A pump would be easier to deal with while living abroad. It also allowed for us to give her the tiny amounts of insulin her small body needed.

(Molly with her pump on. At first we would put it in her arm because she didn't have much fat on her. Now we put it in her rear and thighs.)

Belize fell through, but the pump worked out well. It has taken some getting used to but it has been a big help.

(Below: Some pictures of Molly over the years)

(Molly at her first JDRF Walk A Thon, with her Aunt)

Molly is now 4. We are finally starting to stabilize her and we are getting her A1C down. But we know that the next time she has a growth spurt it will all change again. We have been fortunate. Molly hasn't had to be admitted into the hospital since her original diagnosis. We know that if she gets the flu and cannot keep food down we will end up in the hospital again. She ended up with croup a few years ago and I didn't realize what an ordeal that would be. They put her on steroids for the croup but that caused crazy BG's and we had to give her one and a half times her insulin. She just deals with things, especially sickness, differently then my other kids. This last winter she had a mild seizure accompanied my hallucinations. She was able to eat and pulled out of it fairly quickly.
I have to watch her at night to make sure she doesn't go low. My greatest fear is that one morning she won't wake up and will be in a diabetic coma.

(Molly was low after church. She is cuddling with Grandpa while waiting to feel better.)

This last summer we had the scariest episode yet. I went into look at the kids before bed and Molly jumped. Well, she kept jumping. I realized she was seizing and called for my husband. He came running to take care of her while I got her glucometer. She was only 80, which is low but not unusually low. I have seen her functioning while in the 40's before. I got her some apple juice, Molly calls it "low juice". She has always been able to drink it before, but not this time. She aspirated, turned blue, and then white. She finally stopped seizing but was passed out cold. I had already called the ambulance and we were waiting for them. We were scared out of our minds. I went to the cupboard to see if I had any of the gel paste they give you in the hospital. Her glucagon caught my eye. I couldn't remember if I was supposed to give it to her if she was low or high. But I knew it was for when she was passed out, so I gave it to her. By the time the ambulance arrived she was coming to. My husband ran out the ambulance with her in his arms and they took off. She was stable by the time they reached the hospital. Her chest was clear and her labs came back fine so they released her. What I didn't know was that glucagon makes you nauseated. She was throwing up quite a bit that night.
When talking to the nurse the next day we figured that Molly had been playing out in the sun a lot that day. She was dehydrated and so she absorbed her insulin extremely fast. This caused her to shoot rapidly toward a low, causing the seizure. So we have to watch her when she is active and when she gets hot as well.
Below are some pictures from this years JDRF (Juvenile Diabetes Research Foundation) Walk a thon. We love being able to get together with friends and family to let Molly know how much we love her.

Thank you to all who donated money towards finding a cure! We pray that our little Molly will not have to face this for the rest of her life. Thank you also to those who came out to walk with us and to Dee's Tee's for the shirts!

Wednesday, February 9, 2011

The Cycle of Life

I came to make an observation this weekend. I watched an elderly sister in our ward get up to bare her testimony this week. As I watched her frail body I noticed how much like an infants it was. Sometimes when a baby is born we say that they look old and wise. This was the same face which this sister beheld before me. I thought how ironic it is that we come into this life with frail little bodies. We have to learn to use them but in the meantime we need to have someone take care of us, or else we will not survive. As we get older and our bodies become frail once again, we need the help of loved ones to care for us. The skills with which we learned to control our body in infancy are slowly fading away. That which was once difficult is now difficult again.
Isn't it funny how pregnancy can be the same way. At the beginning it is difficult being sick and then at the end it is difficult being heavy. At the beginning we wonder, "can I do this?" And at the end we find ourselves again wondering, "can I do this?" In the beginning it seems to be a slower process, we are sick for what seems like an extended period of time. And at the end we are in a significant amount of pain for what feels like a long time, but is relatively short. Is this how life is as well? Learning to walk, eat and talk takes a longer period of time. But loosing the ability to walk, eat or talk can be extremely painful and feel like it is lasting forever, but in truth it is relatively short in the scheme of things.
If this cycle seems to be true in our lives, would it stand to reason that it is the same for this Earth on which we live? Will the death of it be similar to the birth of it? Will we find ourselves returning to the roots of our creation? Will it be swift and painful, and feel that it is going on forever? Can we know, as we do with childbirth, that in the moment we will wonder "can we do this?" but within a short time it will be over and all will be well? And as with all our trials, we will leave the refiners fire BETTER, STRONGER and HAPPIER than we were before. Hold on, this is but a moment.