Friday, January 27, 2012

Kallie: Proven to be a fighter

On November 7, 2007, our lives changed forever. Well wait, let's back up just a little ...

On February 5, 1999, our lives changed forever. We had a little girl ... born a little early ... and she was diagnosed just a few days later with Down syndrome. We were not your typical, world turned upside down, all our dreams of the perfect child have now been lost, type of reacting people. You see, we had just been through five months of having really bad experiences with our doctors. I had an abnormal AFP test ... however the risk was not that we would have a child with Down syndrome.

Down syndrome was a blessing to us ... given that the doctors had said we would be possibly be facing hydrocephalus or spina bifida. You see ... our baby was our baby, Down Syndrome or not. Kallie proved to be a fighter from day one and has carried on ever since.

When Kallie was four days old, we found out that she had a VSD (ventricular septal defect) in her heart that would not require surgery at that time. She still has not needed surgery, but it is a possibility because of its location on the tricuspid valve.

At 18 months, Kallie was diagnosed with Alopecia Areata. She had about a dime sized spot on her head that lost hair and was not growing back. We were told that because of how young she was when she was diagnosed, that Alopecia Totalis was a very likely possibility. While Kallie did lose about 50% of her hair at one point, including the hair on her arms and legs, eyebrows and eyelashes, she has never gone completely bald. Her hair will go through phases of coming out in clumps ... to having a full head of hair. Her beautiful eyebrows never returned.

At age three, Kallie was diagnosed with hypothyroidism and vitiligo ... complete with multi nodular goiters on her thryoid at one point. Thankfully the goiters are no longer present but we do keep an eye on it. The vitaligo has affected her in inconspicuous places, so it is easy to hide. It is contained mostly in her panty area and the lower part of her leg right, near her foot.

Fast forward to November of 2007, when Kallie was eight years old. She had been battling a virus and was not eating well ,,, but in hindsight, she was drinking excessively. Now people ask me, "What is excessive?" She would finish one drink and be asking us for another all the time.

We thought that she was drinking a lot because she was not eating much. We thought she was not eating much because she was not feeling well and had a virus. I was not the type of parent that runs to the pediatrician for every little thing, so this went on for about a week. She would eat little bits but for the most part she just was not feeling well. After a week, I decided it was time to take her in.

The first thing they did was weigh her. She had lost 10 lbs since her last visit. Other than that, it was a typical doctor visit. The doctor agreed with me about it possibly being a virus, but he was concerned with her stomach hurting her and with the weight loss ... so we did a urine culture.

I am very close with my pediatrician, so when he walked into the room and told me, "Mommy, your going to need to go to the hospital immediately" ... my heart sank! Much like I reacted when I was told she has Trisomy 21 ... I just wanted to be assured that my baby was not going to die.

Barely able to contain myself, I drove to the hospital with my little girl. Yes ... he told me that there were keytones and protein in her urine and that her blood glucose level was running dangerously high. Keytones are dropped in the urine when your body burns fat for energy because your pancreas is not producing insulin to break down carbohydrates for energy.

We got to the hospital and she was hooked up to an IV. After hours of mish mosh ... I cannot even remember all that happened in those first few hours ... we were transferred to a different hospital because she was considered high risk. Right before transfer, we were told that Kallie in fact has diabetes and would have to be treated with insulin for the rest of her life.

Talk about the roof caving in ... I was scared ... we were scared. We knew nothing about diabetes, insulin, finger pricks, needles, the pancreas, counting carbs, monitoring blood sugar trends and the list goes on! We had to stay in the hospital for one week ... one week to learn how to take care of our daughter and not kill her by over or under dosing her. Talk about scary!

I remember blogging about things in the beginning and talking about how scared I was to leave the hospital. How I felt like I could handle it if there nurses were there to clean up our mistakes. And how on earth could I ever leave her with anyone? How could I trust she would be taken care of properly? I was a wreck.

In an instant, I went from being the mom of a child with Down Syndrome to being the mom of a child with Down Syndrome and Type 1 Diabetes.

Those first few months were beyond hard. I felt like a failure every time I got a low or a high blood glucose reading. I felt inadequate to take care of my little girl. I was so overwhelmed with counting carbs, measuring insulin, making sure she ate breakfast, lunch, dinner and three snacks. I was waking up at 2 a.m. to test her, since in the beginning that is something you have to do.

All of this added to making sure that my other daughter did not feel like Kallie "ruined our lives by getting diabetes". You see ... diabetes does not just affect Kallie ... it affects our entire family. My other daughter resented the extra time she saw me spending on Kallie and was acting out just to get my attention. I was so stretched, that I thought I would burst.

And then ... we put Kallie on an insulin pump. What a Godsend! Pumping is not for everyone ... but for our family, it helped bring back normalcy and less poking and less attention called to us when we had to dose Kallie out in public.

These days we control the diabetes instead of letting the diabetes control us. We do the best we can ... we still fail, we still struggle with highs and lows and we still feel some days like we do not know what we are doing at all.

It is pretty ironic though -- our feelings toward the diabetes in the beginning. It was very similar to the way some people may feel when they are told their child has any kind of illness or a disability. How am I going to do this? I don't know anything about that! But God always provides the strength and a way to get through things.

Just over two years ago, I would tell you that there was no way that I could have a child that I would have to give injections to or count carbs or better yet, do anything more than I was already doing for Kallie.

These days I will tell you ... I am a proud mom to a beautiful little girl who was made me grow not just in knowledge but in character and given me a passion to find a cure for Type 1 Diabetes.


Contributed by Christina at Kwisteena's Kwaziness

1 comment:

  1. I to have a downsyndrome 17 yr old boy diagnosed with type1 two years ago jacob has a 1on1 lvn with him at school he refused the pump. We r managing. Well. But worry who will care for him in yhe future. Thsnks for you story I have not met anyone in my area with same situation. You have a beautiful strong daughter. God bless you. From a mom inPasadena calif.