Good news – Chris’ new medicine has been making him feel more “normal” than he has in over a month! Woohoo!!!

We still don’t know what his medical mystery diagnosis is, but the most recent guess is sarcoidosis. It’s very difficult to diagnose since there isn’t an actual test for it, so it can only be diagnosed by exclusion (basically – exclude EVERYTHING ELSE first, and then you’re left with it). It’s not 100% but that’s the neurologists’ best guess at this point.

Not familiar? I wasn’t either. Sarcoidosis is a label used for patients who have tiny clusters of inflammation in different areas of their body (generally lungs, lymph nodes, eyes, or skin). You may remember that Chris had a nonspecific “spot” on his lung? That’s what the current guess is – that its sarcoidosis (could also be scar tissue from an old Cocci virus – aka Valley Fever….or it could be something else still unknown, too). The good news is if it is sarcoidosis, it often goes away on its own within a few years and can be treated with medicine in the meantime. Potential negatives include the fact that many patients have reoccurrences of it throughout their lives, and it also greatly increases the risk of cancer, particularly in areas showing the inflammation.

Chris is set to get another lumbar puncture (spinal tap) on Tuesday, to see what’s up with his infection. Still there? Going away? etc. By the way, the doctors think the infection is related to the sarcoidosis because no one currently knowns what causes sarcoidosis, so the thought is that it could have been “caused” by Chris’ infection, or it could have occurred because Chris’ immune system was compromised while fighting the infection. (Again – remember, these are all guesses….we have no way to confirm or deny the sarcoidosis guess at this point).

After the new year, Chris will go back for another CT-scan. This time, it will include not just his chest, but also his pelvis and abdomen, and it will be a CT with contrast. The hope is to see if there are thee little nonspecific “spots” elsewhere in Chris’ body (besides just the lungs). If so, the doctor may make a determination to biopsy one of the spots. The neurologist indicated that a biopsy of the lymph nodes, in particular, is a relatively easy biopsy (much less invasive than biopsy-ing the meninges in his brain). So we don’t exactly “hope” for more spots, but I guess this would be another step in the direction of finding a diagnosis.

In the meantime, we’re trying to get back to some sense of normalcy. I’ve been working a lot, Chris has been working, and we’ve finally managed to get some Christmas decorations up!!! We’re going pretty minimal this year but I’m glad just to have some holiday spirit creeping back into our lives!

First – a sneak peek of some of our holiday photos. We had these done on November 9th – the day after Chris’ first attack. SUCH a trooper for still going with us to get some family photos!

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A shot of the front of our house. The girls LOVE LOVE LOVE the blow up Santa and Snowman!!! And our lights flash in tune with a music-player : ) Full disclosure = The music player is our neighbors’ and we just hook our lights up to it so the 2 houses are both synchronized  lol.

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The girls’ first ever trip to the Christmas tree farm!!! : )

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The girls would NOT hold still! This was the best “family” pic we could get!

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And the Christmas tree all set up!We went very minimal because I just don’t have the energy to fight the girls all day everyday with ornaments, etc. So we just did lights, garland, and some candy canes. The girls love it all the same!

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That’s it for today. Happy holidays all! Hope everyone has a safe, happy, and healthy holiday season!!!

 

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