75 Days!!

     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. 

Summer!!!!

    Summer is here! We have successfully completed a full year of virtual school for Skye and are now done with elementary school altogether. Colin finished the year strong with all A/B honor roll and Skye finished with all A’s. We fell extremely behind this year with her because for most of the school year she was not able to go to sleep at night due to pain and then needed to catch up on sleep all day. I thought for sure we’d be doing school all the way through July but in early May she really pushed through and got caught up (and even a bit ahead!). Alex and I are so proud to see the progress she was able to make because we’ve seen the struggle up close. Next school year both Colin and Skye will be starting middle school - Colin will be in 7th grade and Skye will be in 6th. 

    In my last update I talked about Skye’s diagnosis of JIA-ERA and the fact that she was starting on a chemo medication called Methotrexate to treat it and hopefully slow down the damage being caused by the arthritis. Well, we gave that a go for a month but will now be switching to a different class of medication called biologics. It is typically more effective for the type of JIA she has and tends to have fewer full body side effects as well. It will require weekly injections that we will do at home and we are praying to see some improvements in her overall quality of life. We are currently in another waiting period because she needed updated liver function tests (which have shown a decline already since starting the methotrexate) and a TB test before we could start this new med. Those were done last week so the only thing we are waiting on now is insurance approval for the biologic (Humira). In the meantime she is also on steroids for a couple of months to try to bridge the gap and help keep the disease activity down.

    The great news is that her dr is starting her on the dose needed for her weight but there is room to increase it if needed. She said if after a few months we are “only” seeing 75% improvement in the way she’s feeling that we can increase it. 75% improvement sounds like a dream come true so to hear that her dr is hoping for even better than makes me so happy! 

    I am in double digits now to being able to drive again as long as I don’t have another seizure. 3 months down and 3 to go! This is the longest I have gone without a seizure since September - super thankful! I had to stop taking one of my medications for Lupus because my insurance refuses to pay for it and it would be $650 every month so I have had to be on steroids pretty frequently but the countdown is on to getting this metal removed so if steroids is what I need to take to get by then that is what I’ll do. Not ideal but also not any better options at the moment so it’s ok!

    Not much else to update - this weekend is dance recital so we’ve had two dress rehearsals and also photos taken in her costumes this week. Today and tomorrow Skye and I plan to lay low and recover before our busy day Saturday! A few weeks ago we weren’t sure she’d be able to do her dances but she is stubborn like her mama and going to just push through. It’s definitely going to be a bit emotional watching her on that stage.  

    Here are some of the pictures we took by our house last night. I won’t have her professional ones back for a little bit.