Sunday, July 28, 2013

Juvenile Arthritis Conference 2013

We went to Anaheim to attend our first Juvenile Arthritis Conference.

It's was awesome in so many ways. We hung out with one of my favorite people, Tanya, who happens to live down the street and around the corner from our hotel. We went to Disneyland, twice. I met face-to-face with amazing fellow JA moms who have lifted me and supported me online for the past two years. Barry connected with other dads. (For me, that was the most worthwhile part of our whole conference experience.) We connected with new JA families. We slept on comfortable beds.

The experience was less than ideal in many ways also. Liam had wicked diarrhea the entire time, which led to many disgusting messes, including a particularly memorable experience at Disneyland. We kept Liam with us during the conference sessions instead of leaving him in the childcare program where he could potentially infect other people's babies. Therefore, Barry and I paid less attention to the presenters and material, so I think we learned less than all of the parents who were attending without a wiggly, almost one year old to deal with. Said child also slept poorly, which meant we slept poorly. Also, we didn't have enough free time to just hang out and talk with the people we were meeting.

Almost all of the "negatives" have to do with Liam. Let me be clear: I AM MADLY IN LOVE WITH MY SON! However, we will not be attending another JA Conference until he is a little bit older and more adaptable. (And hopefully diarrhea-free.) I want to go again in a few years so my kids can connect with other kids who live this and "get it." I don't want Miss Emma or Sir Liam to feel alone, and I know that the conference is a great blessing for kids with Juvenile Arthritis, for their siblings, and for their parents!

Behold! The Photos!













I hope all my JA friends who want to go are able to make it to Keystone, CO for next year's conference. Maybe we'll meet up with you in 2015?

Wednesday, July 3, 2013

Darthritis.

I spoke too soon in regards to Emma's arthritis. Things are not back to normal, though they sure looked that way for five of the past seven days.

Yesterday she woke up crying for me to carry her because she didn't think she could walk. She was stiff and painful, but not swollen. This morning she awoke and gently hobbled out of bed without a complaint, but I could see the stiffness in her slightly inflamed right knee.

Her rheumatologist referred to it as "Darthritis" today. How right she is. This stuff is evil. Doctor confirmed that there is active arthritis in that knee. Her left ankle may also be involved, but we can't be sure because it isn't painful or stiff. After her initial onset, that ankle has been thicker than the other, so that may be all we're seeing now.

So what do we do? We watch and wait. Emma will get her maximum dose of Naproxen, twice a day, for the next three weeks until we see her doctor again.

At that point, if it's still just the one joint involved, Dr. S. will recommend a joint injection. I'm not too thrilled about that idea. Emma would have to go under anesthesia to have cortisone injected into the knee joint. The benefits: localized treatment as opposed to systemic medication. The risks: anesthesia, the injection might not even work, and did I mention anesthesia?

If more joints are involved, we'll start back on the old regimen of methotrexate and Enbrel injections.  The benefits: we know she responds well. The risks: a suppressed immune system, and who knows what else.

I'm praying that Naproxen will take care of this entirely, and in three weeks, Emma will have no joints involved. Pray with me. Send your positive energy, thoughts, and vibes. Please.

That tongue! (Cutting with her left hand!)
When all of this started two years ago, it was horrible. Emma was so painful, so obviously stiff all day long, it broke my heart. Then, we were lulled into a deceptively peaceful time of no symptoms. I am beyond grateful for that year and a half of quiet joints, but I hate that I got so used to it. I hoped that life could stay like that forever.

This time is different. Emma is not experiencing the horrible symptoms of her initial flare. So far, it is only a brief time each morning that she is stiff or painful, but the rest of the day is fine. I don't know if I should feel angry that this is happening at all, or grateful that it is so mild this time around.

I am emotionally drained. I am saddened. I know that I will get to a place where I will hope again and believe in a pain-free forever for my child, but I am not in such a place today.

Here's a little Fiona Apple to get my point across:

Tuesday, July 2, 2013

Little Liam is getting BIG!

11 months old already. This is wild and crazy.

Liam, my main man, is cheerful, friendly, and outgoing. He does cry and has stranger anxiety if I'm not with him when someone new shows up, but that's not so bad.

His ridiculous army crawl has improved drastically in the past month. He has mastered it and moves around the entire house at high speeds. When he is on hard floors he actually picks his little tummy up and crawls on his knees like a normal baby, but that's a new development, so he goes really slowly. We'll see if he makes knee-crawling a part of his regular routine.

Last week he started pulling himself up to standing and has just about perfected that trick. For most of last week he was so obsessed with standing that it was keeping him from falling asleep because he simply had to stand in his crib. I'm hoping we're past that.

He wakes multiple times in the night, but Emma did too until she was weaned, so I'm not expecting big changes any time soon.

He still only has one tooth, still drools all the time, and is cute as can be.

He waves, says the word "up", and loves music. He adores his big sister, she always makes him laugh. He pulls his hair and ears when he is tired. He sits and plays with toys by himself like a little angel. He is especially fond of playing with balls, so maybe there are some sports in his future?

Liam is becoming really good at feeding himself little pieces of food. He LOVES string cheese, all fruit, including raspberries, pears, and watermelon. Kidney beans are acceptable, but he'd prefer to suck down a pouch of pureed fruits and vegetables. He hasn't quite figured out how to drink out of a sippy cup - he sucks out some water and then spits most of it down his front. I'm okay with that, especially since we're experiencing a heat wave right now.

He is currently rolling around on the floor and crawling all over me in an attempt to get some attention. I'd better go.