NY Pics

Easter Eggs

We recently took a trip to NY. It was the first time any of us had been there! We had a great time as we roamed the streets, trying to figure out how to look like "locals". Each day we got up and I spent a couple of hours prepping everyone to go outside for the day. As they lined up, I went down the line checking off all the necessary items.... Thermals, first layer of clothing, second layer of clothing, boots, coats, hats, gloves, scarves...then, when I was finished with Blake I could move on to the girls! The scarf that I bought for Blake was a great scarf, but we discovered one problem. Because he sports the mountain-man look, his "beard" kept catching the scarf and it was "shedding" everywhere! Every time I turned around, he would be standing there with fuzz stuck all over his face! After we finally got outside and caught our breath, we began the walk down the street. By about the second day, I thought we were doing pretty good at blending in. We knew (for the most part) where we were headed, and how to get there. As we walked down the street, I heard Blake say behind me, "We look like a bunch of Easter eggs!" I glanced around at everyone scurrying past and I noticed that they all had on black coats, scarves, gloves, and shoes. Then I turned and looked at the girls briskly following me and I saw that he was right! They all had on brightly colored coats, hats, cloves and scarves! I laughed and said, "It's okay fuzz-face, I'm sure we look totally normal!"

We saw many amazing sights while we were there including, The statue of liberty, Empire State building, the bull by Wall Street, ground zero, Rockefeller Center, Radio City Christmas Show, Wicked, Carnegie Deli, Museum of Natural History, Central Park, and much more. It was so fun to see the girls' faces light up at each new adventure, and to experience it all myself as well! We learned how to use the Subway system (that Boo says is the one you ride not the one you eat.) We also learned to be quick when the trains arrived when Halli got on the train and the doors closed leaving the rest of us on the platform. (Yes, she is still with us!) I lost my credit card, and we panicked for a bit, we got to try new foods and learned that we love Pakistani food! We learned that we should stay out of some stores when we have four little girls with us. (Ask Blake about that one) But most of all, we got to spend time together every day, and that was the best part of the trip. We grew closer, and laughed, and even shed a few tears. But we did it together, and that is what we'll always remember! And the people of New York will always remember the Easter Egg people with that Fuzzy face guy.

Update on Halli

Two weeks ago on Wednesday, was supposed to be the last day that Halli needed to take her meds. We woke up and gave her her last pill, feeling very excited to be finished. We also tested her urine for protein. We were supposed to be testing her a couple of times a week, but because she had tested negative for a couple of weeks, we got lazy. We hadn't tested her for about three weeks. When we looked at the test, her protein count was really high again. My stomach dropped. I began to kick myself for getting lazy as I didn't know how long it had been high. I immediately called her doctor at Primary Childrens. Because we were to be going out of town to NY for the week, he wanted us to come in before we left. As we met with him, he told us that he was a little concerned that she was having a relapse so quickly after being "off" the meds. Although, we did expect that she would probably have a relapse, we didn't think it would come so soon. We left the office with heavy hearts, and a new prescription for a second round of the steroids. We began her second round the day before we left to NY. We have been testing her urine daily to check the protein levels. (We learned our lesson and are faithful now...) As of Monday, her count has become negative again. So we can begin to taper her down again beginning next week. It will take about six weeks to taper off. I hope and pray that this time, maybe her little kidneys will keep working on their own. She has taken this all so well, hardly skipping a beat. She always gets up and leaves her "sample" for me each morning and has her bowl of "mush" to take her pills with. She is so brave and strong. It just breaks my heart to think of what she has to go through, yet she just keeps living from day to day; smiling and whistling all the while. I can take a lesson from her that no matter what challenges are thrown our way, we can just take it and keep on loving and living. As for now, we'll just keep praying that she'll respond to the meds this time. In the meantime, I'll just get up each day and whistle along with my little munchkin as we carry on.

Te gusta ir conmigo?

I had my 15 year high school reunion the other day. Well, more of a tailgate party to be correct! I was standing with Blake talking to an old girl-friend of mine when I heard someone say, "Is this my 7th grade girlfriend?" I turned to see Ben, (the first guy who made my heart flutter) standing there! I couldn't believe it was him! This was they guy that I spent HOURS talking to on the phone. You know, the ancient kind that didn't have texting, and pictures, and video, and Internet, and well....anything but good 'ol fashioned talking! I remember the day he asked me to be his girlfriend like it was yesterday! I was in 7th grade so I was probably 13. I always tried to go out of my way to "bump" into him and talk to him and pass notes back and forth. (I know, sooo old fashioned, but we didn't have cell phones smaller than a small car let alone texting!) Anyway, he passed me a note one day which I opened eagerly and read, "Te gusta ir conmigo?" Now, I don't speak Spanish so it was killing me that I had no idea what it said! (Again, too bad I didn't have my iPhone to just pull up the Internet and look it up. Wow, I am old!)

Well, I got home and pulled out a Spanish dictionary and looked up each word...

Te: You

gusta: like

ir: to go

conmigo: with me

Now as I said, I don't speak Spanish nor do I now speak Spanish. So I have no idea if that is even correct. But he apparently took 7th grade Spanish and I was now his girlfriend! I don't remember how I answered him. I'm sure it was not by walking up to him and telling him anything. It was probably something much more mature like telling his cousin Dallas to tell him or passing another note. Somehow we got through it and it was official. The funny thing was that I was only 13 and therefore not allowed to date or have a boyfriend or anything that even came close to that! So our "going out" meant that we hung out at school and talked on the phone sometimes after school. I remember he really liked Simon and Garfunkel and I was way into Erasure. So he gave me a tape with "Bridge over troubled water" on it and I gave him an Erasure tape and some Drakkar Noir cologne for Christmas. I remember that he never kissed me but my heart skipped a beat every time I saw him or held his hand. (Yes mother, I held his hand... sorry!) He was my first real love! My older brother told me that it was just "puppy love" and I was so offended! I thought, how can this not be real? My heart knows that I am in love! And so began the ups and downs of my love life! Looking back, I suppose you could say that it was puppy love, because it was young and innocent and fun. As I grew older, I learned what heartache was and jealousy and eventually true love. But you have to experience it all. The scary thing is that now I have a daughter who is 13! I can't imagine her talking to any boy, let alone thinking she loves him! I'm sure she'll be MUCH more mature than I was and pay attention to her school work and leave the boys alone. At any rate, it was so fun to see Ben and introduce my puppy love to my true love. Funny thing is that as we talked, we discovered that they are both from the same little town in Idaho! Maybe my heart was drawn in some small way towards my future husband through Ben. Then again, maybe I was just a girl with stars in her eyes...

The difference a week makes

I decided to take the girls up to Idaho for the UEA weekend. We all needed some r&r and what better place to do that than Grandma and Grandpa's house! We left Thursday morning and had a fun three hour drive up to Blake's parents house. Blake wanted to weigh Halli before we left and so he did. She was up to 70 lbs. (Her normal weight previous to all the water retention was around 52 lbs. We waved goodbye to Blake and hit the road. The girls plugged in my Ipod to the truck speakers and we all sang at the top of our lungs to Bon Jovi's "Livin' on a Prayer." It has become a favorite of the girls' for some reason! Anyway, I was thinking that maybe Halli looked a little less swollen. When we got to Mom and Dad's house, they commented that Halli looked much better than she did when they had seen her last. I agreed although her belly and ankles were still very swollen. I went to bed that night feeling positive that maybe she would begin to slowly respond to the medication and lose the water. The next morning I was awoken by a bouncy and happy Halli on my bed! She was jumping on my bed and yelling "MOM! Today is a celebration day!" She pulled up her shirt and my mouth dropped! I couldn't believe the difference! Her belly was at least half the size it had been the day before! Her ankles, face, everything were drastically reduced! All the girls were on my bed by then and we all smiled and hugged and cheered for Halli. That was the beginning of our day of celebration. It was also the beginning of the weekend of peeing for Halli! She went to the bathroom more times this weekend than I've seen her do in a long time! By Saturday, her body had lost all of its swelling and looked normal again. I couldn't believe how fast it happened! I was expecting a slow process and it happened literally overnight! We tested her urine and weighed her this morning. Her protein level is only a trace. That is very good news, it means her kidneys have responded to the medication. Her weight is now 51 lbs! She lost 19 lbs in 3 days. The human body is absolutely amazing to me. I am constantly in awe at how it works. As I have watched her today, I noticed a couple of things. First, her eyes actually look gaunt and sunken. I don't know if this is from losing so much fluid so fast or maybe from a lack of sleep. Her cough is still present, but seems to be diminished. Also, she gets bursts of energy and bursts of anger. I can tell that her emotions are all over the place. I've chatted with the older girls and told them what is going on so they can be patient with her.

Although the swelling is gone, we still have a long road ahead. It is so good to have our Halli back. I believe that her improvements are the result of much fasting and prayer. Thank you to everyone who has kept us close to their hearts.

We spent our day of celebration playing with Grandma and Grandpa. We rode Go-Carts, got ice cream, drove to a honey boutique and enjoyed hanging out at their house. It was a perfect weekend. The only thing missing was Blake!

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!