Wednesday, January 22, 2014

2014 Great Strides Video

I want to make this an annual thing, because it's such an awesome idea and I've watched so many videos from other CF parents that are really moving.  So without further ado, here is our 2014 Great Strides video for Judith's Crusaders!

Tuesday, January 21, 2014

Culture Results

No changes from the normal!  It's both good and bad, because the MRSA is still present, but she's not growing pseudomonas or anything else.  We also finished the antibiotics, and Judith's finally closer to her baseline.  She's coughing here and there on her vest, which is good, and it's nothing that's really concerning to any of us so Dr. G. wants to just monitor instead of doing a second round of bactrim.

I was able to get some pictures at clinic this time.  I usually only get to take pictures during vitals since I'm always busy talking with the team in the exam room, but since I was working on a video for our Great Strides team, I made sure I got a few shots.

Judith's getting much better with wearing a mask at clinic.  It usually comes off in the exam room, but that's ok.

She was NOT a happy camper!

Wednesday, January 15, 2014

Clinic Visit

Judith's quarterly clinic visit was yesterday afternoon.  It was a typically gloomy day like the majority of clinic days are, but the weather didn't match the mood of clinic since we had a great visit!  It was unexpected, and all of us (her team included) were expecting a longer visit going over various options.  We dodged a bullet this time, but still have some things to consider down the road.

Everyone is pleased that Judith gained weight this time!  She's up to 28 lbs, and is 36" tall.  I know she didn't shrink and lose that 1/4" since her well visit, but she didn't want to stand tall with her heels against the wall so they could get a more accurate height.  Either way, I don't think she grew that much in a month anyway, so she's still likely hovering around the 36 1/4" mark.  For height she's in the 19th percentile, and moved up to the 22nd percentile for weight!  Her BMI also increased slightly, and she's now at 15%.  So while that's still a far cry from the ideal 50% they would like her to achieve, she's progressing instead of regressing and the team is pleased.  I seriously did not expect to see progress like this, and am happy that we don't have to start some of the other interventions we had discussed on the phone!

Our dietician didn't feel comfortable starting an appetite stimulant right now since Judith is gaining and progressing.  It's something we want to hold off on until she absolutely has to try it so it doesn't lose effectiveness by the time she would really need to rely on one.  I also talked to Dr. G. about a realistic outlook for the possibility of needing a g-tube.  With Judith's poor eating habits lately, it's something that's been coming into my thoughts more frequently, and it's something the team is considering.  He said that while he does not see a need for one right now since she's making some progress, it's something we need to keep considering for the future.  We can't take it completely off of the table, but for now we can put it on a back burner and let the thought simmer until it's absolutely necessary to put one in.

We also discussed the recurring respiratory symptoms Judith's had since she had her sinus infection, and are waiting to see how she's doing once we finish this round of Bactrim in another week.  Her MRSA is still sensitive to the Bactrim, so the increase in cough shouldn't be from that unless it suddenly became resistant to it since her last culture in October.  If her cough is still present after we're done with this round of antibiotics, we'll reevaluate and start another round as needed.

I'm still at a loss about how to make visits easier for Judith.  She's still a miserable beast and wants nothing to do with them when they examine her.  At least we didn't have to almost pry her mouth open to get the culture this time since she was busy coughing and screaming, but we did get a really good one since she was coughing.  We'll know the results in a week like always, and I'm keeping my fingers crossed that there aren't any pseudomonas present that could be aggravating the cough.

Friday, January 10, 2014

General Update on Judith

I think we're starting to go a little stir crazy here.  We haven't been able to do much because of Judith's sickness and the increased treatments we have to do as a result (the vest alone sucks a good 1.5-2 hours out of your day), but on top of that we experienced record cold temps that we haven't seen in a couple decades.  I know a huge chunk of the country was plunged into that polar vortex, so many of you can sympathize with what was going on (temperature being relative to the area you live in, of course).  I was grateful that I called the CF clinic on Monday to let them know that Judith was not taking her liquid meds, and Dr. G. wrote a new prescription for bactrim tablets.  Judith and I made the trip to the drug store Monday evening so we wouldn't have to worry about going out in the bitterly cold conditions Tuesday.  It was a super smart move, because it was painful to even go out and start the car on Tuesday so I wouldn't have a dead battery in it!

Judith's doing much better with her antibiotics now that I'm able to crush them and hide them in her drinks.  And overall, she's doing better as well.  The cough isn't nearly as frequent, but she still has a lot of nasal discharge and sounds congested.  Our next clinic visit is coming up, so I'm hoping that they'll be able to give us some additional things to do to help her fight off the lingering symptoms.

Sunday, January 5, 2014

Not The Best Start to the New Year

So far, 2014 hasn't been kind to us.  Not only has the weather completely sucked and we've been blasted with super cold temperatures (although I'm grateful that our temps haven't been as low as some of my friends scattered across the country, it's still pretty darn frigid here!), but we've been in a battle against some respiratory crud.  John actually had a nasty cold before Christmas, but it took until New Year's Eve for Judith to break out with symptoms.

By New Year's day, I knew it was time to act, because the faucet from her nose went from clear to green.  Gross for most people, but since I'm so used to dealing with mucus at this point, it didn't phase me other than being a signal to take action.  I got a sick appointment at the pediatrician on Thursday since Dr. G. wanted me to take her in for a listen to make sure her lungs were still clear, and luckily they were.  She has a cough and sinus infection, which she so graciously shared with me.

Of course this means we've entered into yet another epic battle of wills with liquid medicine.  Dr. G. has Judith on a higher dose of bactrim right now, which would make for some interesting pill splitting if we were able to do the pills.  I think it's going to come down to that, though, because once again we've tried everything we can possibly think of to get the meds into Judith, and she just.won't.take.them.

It's frustrating, to say the least.  This piled on top of the eating issues feels like one pot hole after another.  She's eating even less now that she's sick, and I'm concerned that she'll lose any gains she's made over the past few months.  The dietician is aware of our problems, and I had another good conversation with her the other day.  We decided that we're going to try to get Judith enrolled in feeding therapy, and will try an appetite stimulator to see if that makes a difference.  We're starting to max out on options, and John and I are getting increasingly frustrated while feeling defeated.  I'm sure we're going to have a long discussion about all of this at Judith's next clinic appointment later in the month, and I'm hoping that we can think of a couple other options in addition to the ones we're looking at that will help Judith eat more so she can have better weight gains.

Wednesday, January 1, 2014

2013: A Review

Happy New Year to all of you!  I hope you have a healthy and prosperous 2014!

We had plenty of highs and lows during 2013.  I think 2 of the biggest high points were the move to the new church last April, and Judith's early discharge from early intervention.  It's kind of funny that both happened in a relatively close time frame, too.  While we do miss people from our former church, I'm glad that we have been warmly welcomed into our new church.  And getting the news that Judith was basically caught up to where she needs to be and didn't qualify for services was huge!  It's news that I wasn't completely expecting at that point, but it was very awesome to receive it!  Had you asked me 3 years ago when I thought I would receive that news, I wouldn't have been able to give a good answer since it felt like it was a long, long time away.

Of course there were lows, the biggest being Judith's first hospitalization post-NICU.  We had such a good run with keeping her out of there, and it was really disappointing to hear how significant the backup was.  Both John and I are relieved that we were able to clear it with the flush, even though the process was super gross, but at the same time it's hard to accept that Judith will be facing more flushes in her future.  Hopefully those will be spaced far apart.

My hope for 2014 is everyone staying as healthy as possible (although it looks like we're already off to a bad start, because Judith is getting sick with something respiratory), and Judith staying out of the hospital.  I want to see things continue to go well at church.  I want to see Judith continue to grow and develop into this incredible little human.  I also hope that we can have a prosperous year, and that 2014 is good to us.