Now what?

So, it has been 5 weeks of Nick's steroid treatment. On Friday, his test results were back.....not good. His liver counts are 5 times higher than they were before (which the steroid was supposed to bring down), he is even more anemic, and his white count is down to 1.3 (this is the most concerning thing). Well, we had an appointment on Monday to see the PA--of coarse the Dr is out of town this week--and she was more concerned with the low white count because it means he is more prone to infections. Since he was tapering off of the steroids, he will continue to do that over the next week and follow-up with the Dr next week. The PA was also going to talk to the other Dr's to see what suggestions they might have. She mentioned a MRI of his biliary duct (to see if there was a blockage) and another medication that they use for cancer patients (but he would have to get his white count up). She mentioned this autoimmune hepatitis is tricky because you never know exactly how the immune system will react. Besides being able to keep food down, I haven't noticed much improvement with Nick. He is still tired, dizzy, weak, and constantly thirsty. We are discouraged. I think that we have been pretty positive about the steroid's working until last week, and now I feel like we are back at square one. I keep thinking that he will just get better if I pray harder, have more faith, read my scriptures more, attend the temple, and be more patient with my kids. I feel like I have to be "perfect" for him to be "cured". I've wondered if his sickness is a test to teach me a lesson and I have yet to find the "right" answer. I hope that the reason the steroids didn't work is because something else is going on that they have to find because if they don't find anything else then what will we do??? I feel so selfish because I know that there are people that are dealing with worse problems and here I am complaining. Some days it is so hard to keep things in perspective. Today is one of those days.

Kindergarten.....here we come!

It's official! Our little girl is getting ready for kindergarten and yesterday we attended the roundup! What a moment. It's like the first phase in sending your child off to school. There were a few parent tears and some children crying as they split them into groups to go and sent them off with the teachers. I'm not sure Emma even looked back at me after I showed her where to go, but my heart ached for a moment. I always thought that parents who choked up about their children heading off to school were crazy. I mean, it's exciting to learn! School can be so much fun! What's the big deal? Sigh. Until it was my child. Then, my heart ached. How could this be that my child was already old enough for kindergarten? Was it this hard when she started preschool? I don't think so. I looked around at the other parents and children and tried to point out the ones that Emma would know. But, who am I kidding? I'm pointing them out so I can see how they are handling this. I'm finding those moms to see who I'm going to know as we send our children off to school. So, I will have someone to talk to when I try to hide my tears that first day. Tears will only be allowed in the car! I want Emma to see excitement on my face because she is thrilled to be going to kindergarten. She talked about the roundup the rest of the night and even did some of the worksheets they sent home. She will only hear excitement come out of my mouth! So, ready or not.....here we come!

Just Call Me Grandma

Last week, I was out shopping with Brielle at Tai Pan. I was about halfway through the store when this guy comes up to us and starts smiling at Brielle. He told me she was cute and asked me how old she was. Since she was hiding her face, I answered that she was two. THEN, he asks me "So, are you the mom or the GRANDMA?!??" WHAT?! As my mind is processing this question, I answer "I'm the mom" with an expression of disbelief on my face. THEN, he has the nerve to add salt to my wound by saying, "Oh. I was just wondering because I couldn't TELL?!??" OUCH! I was in shock! Am I delusional? How old do I look? (I wasn't wearing my orthopedic shoes that day!!) Now, I certainly don't expect people to think that I am 25............I also realize that sometimes generations can be closer together by having babies really young; therefore, a grandma could be 35 years old (but I don't think this is the norm!) So, is that how old he thought I was? 35???? OR OLDER? (Not that there is anything wrong with 35!) I just haven't quite grasped the fact that I am approaching the 3-0 mark; let alone the 3-5 mark! And I would never assume that a 35 yr old was a grandma! My only comfort was that he did have glasses on, was probably in his 50's (maybe his timeline is skewered), and loves shopping at Tai Pan (strange?) Of course, since this humbling event, my girls accidentally called me grandma, thought it was hilarious, and have continued calling me grandma all week. At least I have a connection in plastic surgery. It looks like I might need a face lift sooner than I thought!!

Sisters & Friends

Some days it is so nice not to have a schedule. Thursdays are "free days" with no preschool, dance or other commitments. I think the girls enjoy these days because they have more time to play before they eat breakfast or get dressed. One such Thursday, I had a seriously cluttered kitchen that needed some attention so while I worked the girls played. It started to get really quiet.....you know what that means! But when I checked on them they were just playing "mommies" in this toy crib. Cute, huh? So, I went back to cleaning and when I was finished, I found them in the bathroom getting ready for the ball! So funny!! I love it when they play together so well. Not every day is like this, of course! But it makes me so happy to see these sisters playing like best friends!

Nick Update

So, the results are in! His HIDA scan was unremarkable. He was negative for celiac disease, IBS, and biliary duct something or other. They rate the liver inflammation from his biopsy on a scale of 1-4 (4 being the worst). He was a 4! Two of his liver counts had gone down with a week of steroids, but one of the counts had gone up. They told him that there was nothing he could do for the extreme thirst he was having (just a side effect of the steroids). The good side effect is that he has a much better appetite and no longer throws up! I still came away feeling a little disappointed. I am glad he has nothing else going on, but surprised that the steroids weren't affecting his liver counts more. They said it could take around 8 weeks for the counts be back into normal range!! 8 weeks! I was thinking that right now his counts would go down quickly while he is on a higher dose of the steroids. Tomorrow he starts tapering them down and it looks like he will be done by about mid-April. From there they will monitor his blood work every three months to make sure it stays normal. So, we wait! (And I learn how to be patient!!)

"To the Mothers in Zion"

Last week in my Doctrine and Covenants class, my teacher referenced this talk given by President Benson back in 1987. It is such a great talk! So, I found the article and printed it off to refer to. I really like the 10 ways we should spend time with our children. I love to-do lists!! I also love it when the Prophets and General Authorities give us specific things that we should be doing. If you're a mother and can find five minutes-- read this article! Here is the link:

http://emp.byui.edu/SATTERFIELDB/PDF/ToMothersofZion.pdf

Fantastic Five

our family

she loves stuffed animals!

her birthday lunch at Applebee's

opening her princess present in her princess dress

Emma is FIVE! Although Emma has been giving us birthday present ideas (via the television) for weeks now, with everything else going on, it still snuck up on me. I love celebrating birthdays!! We started off with a "pretend birthday" party over the weekend since Uncle Blake was visiting. On her birthday, we took her to lunch at Applebee's where they brought her a treat and sang to her. Then, came the "real party" with more presents, cake and ice cream! Some of her favorite presents include a stuffed animal (cat), a tea set she can paint by herself, and Tinkerbell memorabilia. I can't believe how fast time goes by! What a shock it was to have a red-headed baby five years ago! Emma is such a sweet little girl! She is a great helper and playmate for Brielle (even if she gets a little bossy sometimes)! She likes to learn new things and she just learned how to skip by practicing all over our house. She loves to play with her stuffed animals, play school, dress up and Polley's. She also wears the knees out of her pants by pretending she is a horse! Recently, she has helped me by reminding Nick to "eat some food" if he feels sick and asks him how he is feeling after we have been gone. How thoughtful! I am so grateful she is my oldest daughter! I love her very much!