The Next Step

Today we spent an hour and a half at the doctor's office. First we waited. Then I talked with the nurse while Emma ran through the room and tried to get into everything. We went over all of the side effects of methotrexate. We also went over everything I need to know to start giving Emma the weekly injections. I picked up the medication, bought my sharps disposal container (I feel so official.) and went back to see the nurse once more. This time Emma played with rubber gloves and a (clean, unused) specimen cup while I talked with the nurse. We double checked that the medication dosage matched the prescription. We played with a syringe to check out the size of the needle and make sure I knew exactly how much medicine I would be drawing up and giving.

I got more direction than necessary, but that's okay. In fact, I think I got more instruction on how to draw up a liquid with a needle and syringe from this nurse than I've received from any of the vets I've worked for over the years.

The nurse is great. Emma's doctor is fantastic. I feel like we're getting really special treatment and it is refreshing to see that, in this busy, fast-paced world, these people are taking the time to care. I'm really happy with Em's medical care so far.

Back at home, while Emma napped, I spent a ton of time on the internet and felt productive. First, I ordered three books about treating arthritis through natural methods, particularly diet. I'm interested to see what they say and try out some new recipes that will supposedly help decrease inflammation. Anything is worth a shot. I figure the more we do to help control this madness, the better odds we have of succeeding.

Then, I starting reading blogs written by other moms of kids with JRA. Check out the list I added to the bottom right of my blog if you'd like to read some. It feels good to know we're not alone, to see that other families struggle with this, and to learn that so many people are stepping out and speaking up in their communities to educate others about this disease. Awareness is important. I mean, really, I never heard of a child getting arthritis until it happened to my own kid. I look forward to following these other families' journeys and learning from their experiences.

Last, I called our local chapter of the Arthritis Foundation in an effort to connect with people in my own community and learn how to get involved. Unfortunately, the lady in charge of the JRA department wasn't in, but I left her a message, so we'll be in touch soon.

I feel good. I feel like I'm finally doing something, like I'm taking steps to improve to my little girl's progress.


We'll see how her first injection goes this weekend...

17 months

Mooo!

The kid is a talker. Much of the time we can't understand what she's saying, but more and more her words and sentences are starting to make sense. The other day she turned to the dog, who was outside waiting to be let in, and said, "No. Go potty!" I love when she uses a bossy voice and chastises the pets. She just said "Bless you" after Baby Torah sneezed. One of the highlights this past week was when Emma started to say "Gramma." My mom's heart melted. This kid is amazing and adorable.

In the past month she has sprouted her bottom two canines. I believe that just leaves the top two canines and four more molars until she has all of her baby teeth. What a big kid.

When I look at older pictures, I am amazed to find that she is, in fact, getting cuter and cuter with time. She is more physically capable every day. She really enjoys playing in water and swimming. She loves playing with babies and animals. She loves singing and dancing. You should hear her belt out the hymns in church. My apologies to the people sitting around us on Sundays, there's no way to keep a straight face when Emma's singing along.

Her first appointment with the pediatric rheumatologist went pretty well. We should be able to start some more medication soon to get this inflammation under control. That will be very good. Keep your fingers crossed that it works.

We love our Emma Bean.

Sixteen Months

Yesterday, my Emma hit the 16 month mark. We celebrated with a family trip to the Spencer cabin for the weekend with Barry's dad and older sister. Even the dogs came. It was Emma's and my first time there, so it was pretty special. We had a lot of fun playing in the snow and enjoying the fresh mountain air! I even rode with Barry on the snowmobile! The only bad part was that Em doesn't sleep so well when we're somewhere different, so it was an exhausting trip.


The biggest developmental change that I've noticed in the month is Emma's ability to communicate. Her speaking vocabulary has grown so much in the past few weeks, it's amazing! She can say so many words now, including truck, car, paci (pacifier), light, nurse, milk, snack, night-night, sock, clock, baby, mommy, daddy, Dawn, Addi (Addison), kitty-kitty, boo boo, up, please, help, bath, hat, phone, eye, nose, mouth, yes, and no. Please keep in mind that many of these words don't exactly sound like the real thing, but I know what she is saying and she knows exactly what she means. She also makes animal noises, which is a lot of fun. She knows the sounds that are made by a cow, horse, sheep, goat, duck, goose, dog, cat, monkey, and snake.

Em now has four molars. Well, she's got three and a half, but that's close enough for me. Sometimes she really likes brushing her teeth, sometimes she really hates it. I hope she's learns to like it better so she can grow up with no cavities like her mommy.

A very difficult discovery has been made in the past month. A few days after her fifteen-month-day, Emma started limping and was clearly in pain when trying to walk in the mornings. I couldn't figure out why. Eventually it became obvious that her ankle was swollen. It didn't get better, so we went to the doctor. It didn't get better, so we took an x-ray. It didn't show anything unusual, so we did bloodwork. The bloodwork indicated that Emma could have Juvenile Rheumatoid Arthritis. The next day a few of her fingers appeared swollen as well. Three days later a knee became extremely swollen and painful. The fact that it's showing up in many different joints confirms the diagnosis of JRA. We're going to see the ophthalmologist this week, going to recheck bloodwork next week, and waiting to get in to the juvenile rheumatologist. Things are okay overall. She is on an NSAID that helps with the pain. She's still limping and still swollen, but we're getting by for now.

No mother wants to hear that there is something wrong with her baby and it is very difficult to see your perfect child in pain. However, everybody has their trials in this life. This will be one of ours. Thankfully, Em has a great pediatrician, a loving family, and a strong will. I'm fairly certain that this will change our lives, but I'm glad that JRA is a manageable condition.

My poor little Bean.

Thankfully, she is still her happy, wacky self most of the time. She makes us laugh and smile. She gets around everywhere (she just doesn't run quite as fast any more) and gets into everything. She makes my life complete.