Thursday, October 24, 2013

Lab Results and Flooring

The carpet and really ugly '80s linoleum are gone from the lower level, and the hardwood is down!  It looks absolutely fantastic, and I'm really glad that we went this route!  We have a big delay with the upstairs because we were a box of wood short, and naturally the place we purchased it from didn't have any more boxes in this specific warehouse.  Instead of finishing the whole project this weekend and restoring the house to a less chaotic state, we have to wait until next weekend to wrap this up.  It's not ideal, but at least we can move things around in the lower level and get most of that back to normal.

On a separate note, I called the clinic yesterday and got Judith's test results.  Her team was at the big CF conference last week, so I wasn't able to get the results from her chest x-ray within a couple days like I normally can.  Good news is there is no change.  X-ray looks good, and they didn't note any significant blockages in her intestines (if they could even see anything).  Her throat cultures are growing her usual MRSA, but we're still going to monitor instead of treating aggressively at this point.

Tuesday, October 15, 2013

Big "Annual" Clinic Visit

We have regular, quarterly appointments for Judith at the CF Clinic, with other appointments in between when something crops up, but today's appointment was the big one with her annual labs.  Usually I can count on this appointment turning into an all day ordeal, but got a pleasant surprise today since we didn't have to wait long for any of her labs.

We started with our appointment with Dr. G.  Judith was being her typical  2 year old self, and kept declaring, "I don't want to say 'hi!' to everyone!", but was pleasantly cooperative for the nurses taking her vitals.

One of these days I'm going to remember to take more pictures to help document her visits since I forgot to take some of her on the scale and whatnot.  Anyway, I was excited to see that she weighed 27 lbs., and am cautiously optimistic that it's not because she's backed up again.  This puts her back up into the 15%, which is way better than the 3% she was at during her last visit.  She's also 35 1/4" tall.

Judith's exam with Dr. G. went well by her standards.  Last visit she figured out that clamping her jaw shut can delay Dr. G. from swabbing her throat for her cultures, so today she had a repeat performance.  He finally got the swab, and Judith was happy once she got a lollipop.  Everything is looking and sounding good, and Dr. G. seemed pleased with where she's at today.

The other half of the big annual appointment is labs.  Depending on the day and time, this part can take a long time with lots of waiting, or it can be a quick event.  Today we got lucky and it was a quick event.  We were the only ones in the waiting areas in the lab and radiology, so Judith didn't have as much of a chance to have a meltdown from a long wait.  She was not happy to be stuck with a needle to have her blood drawn or to have her picture taken, but all of the techs that we had today were really good with her and they got what they needed.  I'm not anticipating any changes in Judith's chest x-ray since her last one was clear, and don't expect anything unusual to turn up in her blood work.  I'm sure that her throat culture's going to grow her usual MRSA, and am hoping that nothing new turns up since her culture last month.

Monday, October 7, 2013


It's been quite a few days since I last updated.  Not a lot has changed, honestly.  Judith is doing well with her new glasses, although I think it's going to take a while for her to learn how to put them on herself.  She gets rather irate if she pulls them off and I try to encourage her to fix them on her own.  Ah, 2.5 year olds!

Things are kind of stagnant right now on the CF front, and I feel like we're in a small state of limbo.  Her annual appointment is getting closer and closer, and if I said I wasn't nervous to hear what her GI system looks like I'd be lying.  She's pooping, and it seems like it's where they want it to be, but I thought that the last time, too, and we still ended up having to flush her out at home.  Knock on wood, she's doing well on the respiratory side, so that's a definite plus.  I'm bracing myself for a rough cold/flu/RSV season, and have already heard reports that RSV is off to a strong and bad start.  Not exactly comforting news, but I do feel a little better about it since she's going to be 3 in a couple months.  That's probably also me expressing a false sense of security, but we'll see.

We've had some insane weather over the past week.  Unseasonable humidity, coupled with high temperatures, has helped to create a toddler monster.  The rest of us were cranky because it felt so gross outside (and we had removed our window unit air conditioners back in September), and Judith was twice as bad.  The air quality was good, and I stayed on top of her salt intake to make sure she got enough, and we made it through.  It finally feels like fall again, now that the cold front moved through (literally a couple hours ago)!

The house is also starting to move into a state of chaos, as we have boxes and totes all over the place.  We're slowly packing up as much as we can so we don't have to scramble to do it all at once.  The flooring will be arriving sometime next week, and the week after is when things will get extra chaotic.  I hope the weather is decent, because Judith and I will likely be spending a lot of time at the park while John is working on stuff at home during the install.  I'm pretty excited, though, because I'm more than ready to get rid of this old, ratty carpeting!