Just wanted to make a post to say that we are down to just 75 days until I can drive again! This is by far the longest I have gone without a seizure - on July 6th it will have been 4 months! I am looking forward to being able to drive again and I know everyone else in my house is too ☺️
Colin and Skye went to my parents’ house this past week for a couple of days. They made gluten free donuts, went to a museum and Skye was able to do some crafts too which is her favorite. Alex and I were even able to go out on a lunch date which was much needed. Thanks mom and dad!
Little Skye update - she is not doing well at all. She started her new medication about two weeks ago and experienced many unpleasant side effects. We are hoping they will get better as time goes on and she adjusts to the medication. She has also been complaining of her chest hurting for the past couple of weeks but that has continued to get worse and is now causing her to not sleep so we went in to see her pediatrician this afternoon. Breathing is extremely painful for her right now and because of this she is breathing very shallow which is making her dizzy.
She was diagnosed with Costochondritis which is inflammation in the cartilage around her sternum and rib joints. Not at all uncommon with JIA and thankfully not harmful but it is very painful. Her pediatrician is recommending that we talk to the Rheumatologist about increasing her steroid dose. We are on week 4 of her taper and he feels that we may need to slow the taper down until her biologic medication has time to start helping. He also RX some pain medication to help keep her more comfortable and rest in the mean time. Great news is that she finally was able to catch a little nap after her first dose. Not a long one but I was happy to see her resting!
She’s getting some hugs from Alex now. He can fix almost anything - wish he could fix this! But I know for a fact it will at least help her feel a little better ❤️ We are looking forward to this all being behind us.
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