Today: Part I

I am glad this week is almost over. Me and my two wee ones have been sick for the last week or so due to horrible viral infections. My wonderful husband, who helped nurse everyone back to health, was luckily spared of this long-lasting sickness. Thank you, Jay, for taking such good care of all of us!

Therefore, because Mia was sick this past week, I had to cancel her PT (which I hate doing because she really needs it right now). However, she was semi-well enough to go to her OT appointment on Wednesday. Her OT, Kelly, noticed she is limping again, so she did some exercises with her, but didn't want to push Mia too hard. Despite the challenges, Mia had a good session.

Today's forecast: more snow. And a lot of it. As pretty and peaceful as it looks floating effortlessly from the sky, I can not help but wish for warmer weather. Not only because it means it is time for "gardening season," but because warmer weather means "happy joints" for Mia.

Around lunch time today, Mia was complaining that her knee hurt. This is actually the very FIRST time she has vocalized her pain, besides crying or pulling her arm or leg away from you when you try to look at it or massage it. That has been one of the major challenges for me and my husband - she hasn't been able to tell us if she is in pain or not. We have just had to guess if she was in pain based upon long periods of crying for no reason after she wakes up in the morning or after a nap or when we examine her joints to see if they are swollen or hot to the touch. During a flare-up, her left knee and right elbow will get very warm - warmer than her other joints. So, that is all we have had to go by. As much as I hate to see her in any kind of pain, it was almost a relief for me to hear her say, "Knee hurts!"

So, during lunch, she kept grabbing her knee and then crying and asking me to hug her. Needless to say, she didn't eat much. After a little bit, she told me she wanted to go to bed. So, I carried her upstairs and when we got to the top I told her to walk to her room for me. That's when I noticed she is having a very hard time walking again. Then she started to cry and wanted me to hold her. After I prayed with her, she went right to sleep. I am hoping a good, long nap will help her joints.

Now my mind is racing. Maybe it is the weather? Or maybe because we ran out of cod liver oil and she missed taking it for four days because I had to order more? Or perhaps it is because she fell really hard this morning in the family room? Then again it could be diet-related (I caved and allowed her to have ketchup last night with dinner which I am now regretting)? Or maybe it is because flare-ups usually occur after a viral infection? Whatever it is, I am just praying that she wakes up from her nap pain-free.

Tuesday we head back to Boston to visit her rheumatologist for, yet, another looooong appointment. Four weeks ago, he took a look at her joints and said for us to continue with what we have been doing and that he wanted to see her in a month to discuss steroid treatments (oral steroids and corticosteroids injections into her joints - a procedure she will have to be put to sleep for during each injection). While the injections will probably provide her with welcomed relief from pain, there are many horrible side effects - one of them being that the injections weaken or "thin" the bones. When this happens, it increases the chances of having that bone(s) break.

In my opinion, I think he is waiting for us to cave in and give him the "okay" to load her up with steroid treatments. Mia has come a long way since her initial diagnosis four months ago - so much so that anyone who saw Mia for the very first time right now might not think anything is wrong with her. Her knee, which was the size of a tennis ball back in October, has drastically decreased. While there is some work left to be done, she is getting there. Slowly, but surely.

Hold on...Mia is crying.

I am back - Mia woke up crying 45 minutes into her nap. She is still complaining of pain and would not let me look at her elbow or knee.

Will post more later...