My Secret Fear

Liam is 15 months old now.

Do you know that Emma was 15 months old when her arthritis showed up and broke my heart and changed my world?

I know my kids are very different and will have very different struggles in life, but that doesn't quiet the little, nagging fear in the back of my mind that Liam is going to wake up one day with a stiff, swollen joint. Compared to an average child (Whatever that means!), there is a slightly increased chance of my son developing Juvenile Arthritis, because autoimmune diseases tend to run in families.

I'm a worrier and have been since I was a little kid, so it's only natural that I worry about this evil disease affecting my children. From what I gather, most JA parents find themselves checking their healthy kids' joints from time to time because we just can't help but worry. I know I'm not the only one.

So far, all is well with little Liam. He walks everywhere, has eight teeth, loves food, and definitely ate his weight in watermelon today. He has some separation anxiety when I leave him with other people. It makes me a little sad to hear him cry when I leave him, but it also makes me feel special to know that he really does enjoy having me around. Liam loves our cats, his sister, going outside, his daddy, and just about every other detail of life. He also enjoys throwing the occasional tantrum. I tell him "no" and he cries out and plops himself down hard. Then he either folds in half and puts his big head onto his little feet, or flops backwards and lies down. I try not to let him know that such behavior is actually incredibly cute. I'm blessed that he is mine.

Emma is doing really well, also. She got a really flattering haircut a few weeks ago that makes her look so grown up. I love it. I love her to pieces. She is so brave when it comes to her weekly injections, yet she has recently decided to be scared of the dark. She asks me a million questions a day, often about song lyrics, or why a character in a movie acted in a certain way. I'm grateful that she's my girl.

I'm looking forward to this wonderful month of November. Our family had a happy October. We especially loved the pumpkin patch, Halloween costumes, and trick-or-treating. Speaking of which... Emma is asleep and Barry isn't home, so I need to go dispose of some candy! (Shhh!!! Don't tell them!)

14 Months Old

I'm a few days late... but Liam hit the 14 month mark this week.

 He is a fun kid. He is walking more and more each day, gaining balance, practicing his ability to change direction and stay on course. It's adorable. He is fearless, too. If he can get his knee onto the top of a toy or piece of furniture, he will climb it and stand, and feel terribly proud of himself before he falls. At the park this week, he found great joy in climbing the little play structure and launching himself head first on his tummy down the slide. I love that he trusts me to catch him every time.

If I am sitting on the floor, Liam will sit in my lap. It may be for a brief moment, it may be for a few minutes while he plays with a toy or looks at a book. Regardless of how long he stays, I derive so much joy from the fact that he wants to be close to me. He gives precious little snuggles from time to time, also. There are few things more heart-warming than a Liam Hug.

He has six teeth, three on top and three on bottom. He likes to try to put on shoes. He goes crazy for bananas and apples. He enjoys brushing his teeth, but doesn't enjoy it when I brush his teeth. He loves to play with balls, wear hats, as well as put any and every object on his head and pretend it's a hat.

Liam screams, cries, and clings to me when I leave him with my good friend once each week. It breaks my heart, but his crying is short-lived. All I have to do is get out of sight, and he calms down, thank goodness.

My little boy is truly growing into a little boy. It is wonderful to observe. I hope I get to enjoy his warmth in my life for a very, very long time.

Would You Like To Learn More About Evil Arthritis?

"The greatest trick the Devil ever pulled was convincing the world he didn't exist." -The Usual Suspects (1995)

Emma's arthritis is nice and quiet. Beautifully quiet. Too quiet. In a matter of a few short weeks, her summer flare up was reduced to nothing. Her joints are not swollen, stiff, or painful. There is not even a hint of a limp to her gait. I have been happily lulled into complacency once again.

On the outside, she is a typical three and a half year old. She loves to run, jump, climb, and squeal at the top of her lungs. She adores her baby brother, but does not adore sharing toys with him. She is stubborn and sassy, she is loving and kind.

On the inside, her body is still a battlefield. Emma's immune system wants to attack her joints. Thanks to her weekly Enbrel injection, a sort of stand-off has been achieved. The perfect balance of inflammatory proteins and anti-inflammatory proteins in her body are keeping her immune system in check, for now. I hope and pray that it stays that way for some time. That's really all I can do.

Did you know that Juvenile Arthritis can also cause inflammation in the eyes? It's called uveitis and it scares the living daylights out of me.

Emma sees an ophthalmologist every six months to check for uveitis. As with inflammation in her joints, if uveitis goes untreated, it can cause permanent damage.

She saw her eye doctor last week and, as with every previous visit, he saw no signs of active inflammation. However, he did see a tiny sign of past inflammation. What. The. Crap? I'm hoping he was seeing things, that he is somehow wrong, but my gut tells me to trust this man. If that is the case, then Emma had inflammation in her eye sometime in the past six months.

Some JA medications treat uveitis, some do not. Uveitis does not magically go away on it's own. Methotrexate (mtx) does treat the eyes, and Emma was on that medication for a very long time. She stopped mtx at the end of February. It is possible that the naproxen she took for her flaring joints this summer actually helped her eyes, but she isn't on that anymore, either. The medication she takes now (Enbrel) does not treat uveitis at all.

So... I'm taking her to ophthalmology for her recheck in four months instead of six this time.