Sunday's update

Today was a very emotional day for me. I knew I should have put on waterproof mascara when my eyes began "leaking" as I listened to spiritual music while getting ready for church. I got everyone up and ready for church pretty well this morning. Getting there by 9:00 has been quite a challenge and I really tried to be on time this time! Anyway, throughout the day, I had many people asking me how I was doing. One thing I've figured out is that I seem to be doing great until someone asks me how I am doing. I feel a bit like Pavlov's dog... Someone asks me how I'm doing and tears come to my eyes! I did make it through church alright. Today was a little rough for Halli. She seemed more swollen and puffy. She has also developed a cough. The doctor said that it is because all the fluids in her body are pushing everything up and crowding her lungs. Hopefully, as she loses fluid, that will remedy itself. She also seems to be battling mood swings. The medication seems to make her more grumpy. I am trying very hard to be patient, but as this goes on for a few weeks, I will be praying for the strength to continue to be patient. She also has already seen the side effect of not being able to sleep. She told me today that she woke up in the night and couldn't go back to sleep. I don't know how long she was up... poor girl! We did have some fun moments today. The girls played twister and got all tangled up, and went for a little walk to the park for a bit. We are grateful for everyones support in joining us in our fast. Beginning tomorrow, I will start tracking Halli's weight gain/loss and protein count. I am grateful to be able to monitor everything from home. I will try to be diligent in updating the results on this blog. Thank you again for your support!

We are a blessed family

I want to start this post by telling our many family and friends how much we love each and every one of you. If there is one thing that we have been reminded of, as we have gone through various challenges these last few months, it is how important relationships are. We consider our family to be blessed beyond measure. We are surrounded by amazing people. People who look beyond themselves. People who will drop anything and be by your side when you need them. People who have hearts bigger than this world. People who love. I want to thank each and every one of you for your time, your concern, your babysitting, your meals, your ice cream, your thoughts, your prayers..... your love. The Lord uses each of us as his "hands" and because of your service, we have been blessed.

Today we took Halli up to the U of U hospital to meet with the pediatric nephrologist. That is a new word I learned this week...

Nephrology (from Greek: nephros, "kidney", combining with the suffix -logy, "the study of") is a branch of internal medicine and pediatrics dealing with the study of the function and diseases of the kidney.

For those who may not be aware of Halli's circumstances, I'll explain. A few weeks ago, I noticed that Halli's eyes seemed different somehow. I thought she was probably tired and didn't think much of it. A few days later, as I was giving her a bath, I noticed that she looked like she was putting on weight. I thought that I should try to get her to eat better foods, as she is a very picky eater. After another week, she started waking up in the mornings with very swollen eyelids. I thought maybe it was allergies. Finally one day, I noticed that her whole body was beginning to swell. She had swollen ankles, legs, belly, arms, hands, and face. Everything was swollen and puffy. I realized at that point, that something was very wrong and made her a doctor's appointment the next day. That was one week ago. Over the last week, we have been to the doctor's office countless times. They have taken numerous blood samples, and she has peed in a cup more times than we could imagine! Here is what we have learned:

Halli has been diagnosed with Nephrotic syndrome. it is also called nephrosis. These two terms describe a condition in which the kidneys leak large and abnormal amounts of protein into the urine, this leads to puffiness or swelling (edema), often of the eyelids, feet and ankles, and eventually the abdomen. More than 90% of children with nephrotic syndrome are successfully treated with steroids.

The exact cause of nephrotic syndrome is not known and it cannot be prevented. however, research into this condition is ongoing and researchers are trying to develop increasingly effective treatments.

Halli has been put on the steroid prednisone. They say it takes some time for the steroids to work, but that usually, within one to two weeks, the protein in the urine disappears and the swelling in the tissues goes away.

A child that responds to steroids by going into remission is usually thought to have a clinical diagnosis of "minimal change disease." This is what they have told us Halli seems to have. Minimal change disease usually has a good prognosis.

It is possible that Halli could have a relapse or recurrence of protein in the urine, but we are hopeful that this will not be something she has to deal with throughout her life.

So that is the official word from the doctors. We feel very hopeful that we will be able to wean Halli off the steroids within a couple of months, and that her kidney's will be functioning properly again. Those of you who know me well, know that I prefer to stay away from medications and use alternative methods whenever possible. I do believe that medication has it's place and that this is what Halli needs for now. However, it is still very hard for me to have her on such a high dose of such a strong steroid. While it is nice to know what is going on, we are not out of the woods yet. We will be holding a day of fasting and prayer for Halli this coming Sunday the 27th, and we invite anyone to join us.

She seems to be taking everything okay, but she is tired of doctor visits! She just wants to play with friends! Thank you again for all of your thoughts and prayers. I have faith that everything is in the Lord's hands, and that he gives us trials to strengthen us. Faith told me last night after she said her prayers, that she prays for me to have strength every day. I seem to be in good hands!