Saturday, January 5, 2013

sickos AGAIN & day 4/365

The boy & I (and my cold sore) went shopping a week ago:

First we stopped by IN-N-OUT to have a fun lunch.  We ate in the van & talked.  We even got a strawberry shake that we shared (as seen in the photo).  It was a fun time to spend together.

Then we went shopping at Costco.  

And now TS most likely has walking pneumonia.  Tyler took him to urgent care yesterday because we were worried he might have the flu.  He was running a fever and had spent the last 24 hours in almost constant coughing fits.  Poor little man could hardly sleep.  If it was the flu, we needed meds for Emma asap.  Luckily it wasn't the flu!  Just pneumonia.  haha.  

That'll teach me to try to go on a shopping date with my boy during flu season when he has an immune compromised sister because now she's coming down with it since it's super contagious.  All the kids have come down with it.  He hasn't been anywhere else at all, so it seems pretty obvious this is where he got it from.

TS is being treated with antibiotics (we rarely use antibiotics, but he was miserable).  We called Emma's hematologist to explain what was going on, that Emma was just starting to get sick with the same thing, and we wondered if we could start her on the antibiotics too.  The one on-call doctor isn't the one we regularly see.  I asked him if we could start her on the same antibiotics so that we could avoid her getting very sick and it messing with her blood counts.  He said he wanted to wait until she got more sick and then he'd do a chest x-ray and give meds if needed.  He's a great doctor, but it's things like this that show that FA really is so rare and there are very few experts in it.  We don't want her having a chest xray since she has such a crazy high chance for cancer, and we also don't want her getting more sick.  Each time she gets sick, she has a very high chance of it permanently lowering her blood counts even more.  

We've watched her today.  She laid around and was pretty soggy.  She's also looking pretty pale to me.  She already was looking that way, but it seems worse to me.  Maybe that's just me being paranoid or maybe it's because she uses baby powder and secretly paints her face white. I don't know.  Her cough has gotten worse, but it's still not really bad.  

She hasn't started running a fever, but if she does, or if her cough gets much worse, we'll take her right to urgent care instead of the hematologist.  Luckily, often regular doctors will do what we request when they are unfamiliar with FA. So, hopefully we'll be able to get her on antibiotics for it this way without needing a chest xray.  

I'm very grateful we have our little Emma, and we wouldn't trade her for the world. I just wish she could have lived a normal life for longer than she got to.  For some reason there's been this thought in my mind that somehow she'll magically get better (and not be in severe bone marrow failure anymore), but the reality that she won't is really sinking in.  The meds she's been on for three years have helped, but I was hoping they'd help more than they have.  Having a sibling donor would make the decision to transplant or not a lot easier than it is.

Here are a couple photos for yesterday.  I haven't even looked at the photos I took from today yet.  I haven't had as much computer time due to the sickos.

I was making lunch when one of the kids on the couch noticed Ella just laying on the floor behind the couch, looking around, holding her stuffed cat.  She loves to carry it around.  It's so cute.  I grabbed my camera just in time to get a picture of it.  Once she saw me, she jumped up and came over to me.

A few minutes later, the kids tried laying Ella back down.  Rhys kept laying on her.  Here's proof that Ella was happy during most of it.  hehe.

This was in the morning when I sat Ella on Emma's bed to wake her up.  I'm not sure how well you can see this when it's smaller.  The photo seemed to look better larger than it does here smaller.  Anyway, Ella was so excited to wake up Emma.  Emma then took her stuffed animal and had it kiss Ella over and over.  Ella would laugh and squeal and it was so cute!

Now time to go watch my Korean Drama! 

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