Our latest crazy update

Where does the time go?   I feel as though I haven’t had an extra second for days now.  Holy frustrating week!!!   I thank God that I have a 3 day weekend coming up.  I really need some down time, & some fun thrown in! 

Monday started the week with Kevin going in early for his one big radiation pill.  We knew that he would need his own bathroom, and that he was supposed to eat using disposable stuff.  No contact.  Yeah, that was the start of all of the other things that they should have told us but didn’t.  He got home from the hospital as I was trying to get the kids off to school, telling me that everything we were told was just the tip of the iceberg.  He couldn’t be within 6 feet of anyone.  Like, they asked him if there was another bed within six feet, even with a wall separating.  If so, that person in that other bed could be in danger.  Doesn’t that give ya’ the warm fuzzies???  Better yet, anything that he wears or sleeps on has to be stored away after his seven days of confinement  for a full week before it can even be washed.  Wow.  His plates, forks & cups have to be thrown away in their own bag and stored away for a week before we can put it out for the garbage truck.  And he has to carry a card with him (once he’s allowed near people again) saying that he’ll be radioactive until May 21, 2011.  He will set off Geiger counters.  (He has a half life!)  Yay, huh?  Yeah, we had no idea what we were getting into.  This gave us both this grim, scary feeling about it.  It’s been very surreal as he put it.  It’s freaky.  I know it’s necessary.  I know that this is a precaution; I’m trying not to get too absorbed or freaked out by it, but it’s scary.  One funny that came out of it... one of our wonderful, beautiful children expressed their disappointment last night that Daddy wasn't actually literally glowing.  The kids had expected him to glow like a Christmas tree.  LOL!!!  He slept through the first 3 days for the most part, but I think he's recovering now. 

That Monday night, Make-A-Wish was supposed to be here.  Our volunteer has Lupus.  She’s on Methotrexate & steroids, just like Emily is.  She panicked when I called her to ask her if they’d like to reschedule.  We rescheduled for this upcoming Wednesday.  She didn’t think she could be around the radiation.  That made me worry, so I called our rheumy to make sure that I didn’t have to move Emily into a hotel for the week.  I also realized that Tuesday was our Gainesville day, & I had been expecting Kevin to be able to take Zach to school.  I realized that I would have to leave before I could even drop him at school, and there’s no way that I would be back in time to pick him up.  I asked my parents to get him, but dropping him off here wouldn’t be a good option with no one to take care of him, so I kept Zach with us when we went to Shands.  It was a longer drive than usual.  Construction and the endless “are we almost there, Mom?”’s kept me busy.  That boy had me so busy while we were at the hospital that I didn’t have a spare minute.  Usually the time drags by. I totally expected to catch up on Facebook, but I didn't have any time at all to.

Her appointment was AWESOME!!!  They seemed amazed by how well she's doing.  For the first time her muscle enzymes are down!  When she was admitted in October, her ALD was a 15.1.  The normal range is 3.3 to 9.7.    This week Em’s was a 9 -- within the normal range!    I was supposed to get a copy of her labs, but we all forgot.  We have more of a decrease plan for her steroids!  I am so thrilled that by the end of the month she will only be on 9mgs daily, and after her next appointment it should be down to 6mgs!  Her attitude has been better with the decreased steroids, as well as the prospect of Make-A-Wish. That has helped her to feel better.  They said that she will be on steroids for a total of 2 years, but from next month out it should be very low, maintenance  doses.  They said that at about 6mgs you see the water weight start to drop off.  That will help a LOT!!!  Her elbow has been hurting her, and she’s had that sternum pain lately so we’re increasing her Remicade next time, but I’m comfortable with that.  We discussed sun rules, since sunburn can actually cause a disease flare (which would NOT be good!), we discussed shampoos.  For whatever reason, the steroids make her scalp dry, which is normal, but her hair is very oily.  They say that’s weird- usually the hair dries out and starts to break off.  I thought that was interesting.  To make things even better, they were able to get her IV with one poke, and get a ton of blood from her on the first try!  I’ve been telling her that it’s the steroids that were making it hard;  I think she finally believes me! 

Last time she went, she felt well enough the next day to go to school & therapy.  This time… no such luck.  I had panicked a little bit, trying to figure out how to make all of these things work again.  Thankfully, my work is very understanding.  I was able to stay home with Em yesterday.  Heck, I won’t lie- I needed it, too.  I wouldn’t have called out for myself, but Emily not feeling well offered me a chance to breathe & vegetate.  Also, Kevin hadn’t eaten all day Tuesday while we were at the hospital because he’s afraid to touch anything.  I can’t take care of him the way I’d like, but I can kind of help him out that way.  Jeez, had we known how complicated this was going to be he’d have just stayed at the hospital.  Or I’d have taken the week off.  We truly had no idea.  So that has been this week’s roller coaster.  I hope you’ve enjoyed the ride.  Now please get off before you start to lose it, too!!!  J   We’re trending up.  I can feel it.  We can laugh about it now  :)