Thursday, September 1, 2011

Two Fun Days In A Row!

Yesterday, Emma and I drove to San Francisco for her second appointment with the pediatric rheumatologist at UCSF. Getting there went much better than the first visit because we didn't have to wake up early and deal with as much traffic. I also got in to the correct lane this time, so I could enjoy the smoothness of using my FasTrak at the Bay Bridge toll plaza. We arrived almost thirty minutes before our appointment! (A vast improvement from the right-on-time arrival of visit number one.) I figured we'd have time to sit down and eat a snack, but they called us in early. I love when that happens!

I really love the fellow that sees Emma. She is bubbly, friendly, and sweet. The attending doctor is awesome and full of knowledge, but less warm and fuzzy. Anyhow, they both checked Em over. We all agreed that we see some progress from where she was eight weeks ago, but not enough improvement. The methotrexate that Emma has been on for six weeks now is typically given for several months before doctors want to move on to more aggressive treatment. We're going to increase her dose and do it for two more months before we decide on the next step. I was also told that our physical therapy is lame and we need to do a lot more than just encourage Emma to play in certain positions. We need to take it up a notch and manually stretch and push her stiff joints. It's not my, or Emma's, favorite thing.

As much as I want the mtx to do the trick, I am preparing myself for the likelihood that it will not be enough. So, I'm starting to research and pray about our next choices.
  1. Put her under anesthesia and inject a steroid into her joints. This works really well for some people and can immediately get rid of inflammation. The problem is that it's only possible on bigger joints, so there's no way it could be done to help her tiny sausage fingers. Plus, I'm not too keen on anesthetizing my wee-bitty child. 
  2. Oral Prednisone. It will help her feel better overall, with decreased inflammation, but it has icky side-effects.
  3. Enbrel. A twice a week injection that we would give at home. A little more scary than the mtx, because it's newer and has some really horrible, but very rare, side-effects. It's a biologic, which I think is pretty cool. 
 All of these options are complicated because they have the potential to do so much good, but also the potential to do harm. I have already learned that Juvenile Arthritis is a nasty disease that forces good parents to make a lot of hard choices. As Emma would say, (while spitting out food and putting it into my hand) "I don't like it."

Anyhow. Emma and I enjoyed the beautiful day in S.F. by eating lunch in Golden Gate Park, waving to numerous people and dogs, and taking a walk. Then we came home and I went out to get a pedicure and manicure with my long-time best friend. Not a bad day.

Today was even better. The whole family drove to Santa Cruz for a day of fun! We found a sandy beach, laid out a blanket, and enjoyed the ocean air. The waves were crazy because of a storm on the other side of the planet, and high tide came in swiftly, soaking my pants in the process. I spent the next couple of hours looking really stylish in my husband's orange board shorts.

Emma had a blast digging in the sand, walking along the water, chasing birds, and getting sand everywhere. The sun even decided to come out and play! Barry found three sand toys to add to Emma's collection. I enjoyed watching Emma have so much fun. I also found a few minutes of peace to lie back, close my eyes, and just listen to the ocean.

Our adventure wrapped up with a delicious crepe lunch, here, with my favorite Eric in the world.

I'd say it was a perfect day. What do you think?

1 comment:

  1. Oh my goodness, I have just read all about your amazing new challenges. You are amazing and I love you. I will keep your little family in my prayers as you continue on the journey. You have always been one of the strongest women I know and this beautiful little girl is so lucky. Love you!