Wednesday, March 27, 2013

Germ Attack

It's been quite the interesting week for us.  I am doing much better: still some congestion and a cough, and I sound like Joan Rivers when I talk (in other words, my voice is gone), but my energy and appetite are back, and my sinuses feel normal again.  Yay!  Unfortunately, Judith picked up the virus toward the end of the week, and on Friday began coughing, along with having a runny nose.  Let me tell you, that CF mucus is pretty gross since it's so thick and sticky.

Saturday rolled around, and Judith's cough was getting worse, and she was starting to cough the entire time she was on her Vest.  Instead of waiting it out further, I called the after hours line at the CF clinic, and tried to get patched through to the on call doctor (side note: whenever the parents of a patient or the patient themselves calls the nurse line, the nurses are supposed to triage the patient and immediately patch them through to the on call doctor).  I explained to the nurse that Judith's doctor said to call whenever she started showing signs of symptoms, and they would work to get an antibiotic prescription ready for her.  I asked if she could transfer me to talk to the on call doctor, but I was never patched through, being told that it was "probably just allergies" since Judith only had a low grade fever (99.7).  As the nurse was going on about this and telling me things to do that I already knew to do, I was sitting there thinking, "Why on earth won't you just transfer my call like I asked so I can speak to the on call pulmonologist and see if they want me to take her to an urgent care or if they'll just call in the prescription?!"  So my time was basically wasted, and I had a feeling we might be in trouble in another day or 2 because the antibiotics were being delayed.

Sunday, thankfully, was about as uneventful as you can expect with a toddler who has a sinus infection and mucus getting stuck in her lungs.  First thing Monday morning I called the nurse coordinator at the clinic, and Dr. G. sent the prescription to the pharmacy as quickly as he could.  We had a couple scary moments on Monday where Judith had coughing fits trying to expel the mucus in her lungs and couldn't catch her breath.  That was a first for us, and I freaked out a little bit because I had no clue what to do.  I was better prepared for the second one since I had the instructions on how to use her inhaler if it happened again.  That was the last of the episodes, and she didn't have a bad coughing fit yesterday or today.  I think she's headed into the improvement phase of the virus since she seems to have slightly more energy, but isn't coughing as much.  Of course the antibiotics and breathing treatments are probably also contributing, and that's a good thing.

All of this is happening just in time for Easter.  Go figure.  As a kid, I constantly had colds, various infections, and allergic reactions to medicines right around the Easter holiday.  I can tell Judith is my kid, because she's following suit, save for the allergic reactions to the meds.  And, naturally, John is starting to pick up the virus, and I'm hoping it won't be nearly as bad for him as it was for Judith or me.

Wednesday, March 20, 2013

Wordless Wednesday

Double posting today!  I just have to share some of the pics I took (2 with my Canon, 1 via Instagram):


Soft Buster, warm Buster, little ball of fur!
Happy Buster, sleepy Buster, grr, grr, grr!
(one of my best friends completed the song when she saw the picture)

Lady being a pretty girl

CF Clinic and Illness

First, just a quick update on Judith's quarterly clinic visit.  It'll be short, because she did really well, and things sound good so we don't need to make any major changes right now!  She weighed in at 24 lbs, 10 oz (fully clothed and with a wet diaper, so she was probably closer to 24.5 lbs or a little less), and grew 3/4 of an inch from her nephrology visit, so is now 33.75" long.  We need to increase her miralax dosage because she's still battling some constipation, and we need to keep a close eye on her for the next few days in case she starts showing signs of illness.  Dr. G. didn't want to put her back on antibiotics at this point, despite the morning coughing, out of concern that she might have to stay on them for the rest of the season if we take that approach, and also because we're not sure if the cough is something else or illness-related.  As always, we'll have to wait for her throat culture results, and I'm hoping that the last round of antibiotics knocked the MRSA infection out of her lungs.

Right now I kind of feel like Judith might be a ticking time bomb, waiting for her to show signs of illness.  On Sunday, the Luck of the Irish certainly wasn't with me, because I'm sporting a nasty sore spot on my hand with some bruising and a nasty brush burn on my shin after I tripped over my own pants going up the steps at church (I really hate being so klutzy).  Later that evening, my sinuses started draining, and by Monday morning they were completely stopped up and pounding.  It's been a while since I had a sinus infection, and we were having a pretty good year up until this point.

I've been hand washing and sanitizing like crazy.  So far, so good, because Judith is still healthy (and I hope she stays that way!).  Being a stay at home mom with an active toddler while you're sick is it's own special brand of hell.  I was fortunate, though, that my mom was here to help for a while yesterday, and Judith was pretty good today.  The worst part was seeing her disappointment when I couldn't read to her when she asked (she kept bringing books to me saying, "I read to you!" in her little voice).  I hate losing my voice, but being able to have some vocal rest today has helped a lot, and I hope it, along with the rest of the infection, goes away soon.

So, if you're the praying type, say a little prayer that Judith doesn't catch this, because I'm afraid it might be worse for her than it is for me, and if you're not the praying type, cross your fingers, send good thoughts and vibes, whatever you choose, our way.

Saturday, March 16, 2013

The Winds of Change Are Coming

It took a few weeks for me to blog about this, and I had to keep the secret hidden until the official announcement was made.  John had been interviewing for various church positions a little closer to home, and recently accepted a new job at a Lutheran church a few towns away!  There are a ton of reasons why he began searching almost a year ago, the biggest being that we knew he had to find something closer so we could save on gas (especially with the prices going up again), wear and tear on our cars, and so the long travel times wouldn't continue to wear on our family.  It's not fair to Judith to make her hang around the church in John's office during one of the services (granted there was plenty for her to do, as we have a stash of toys there), and to keep her up past her bedtime for rehearsals.  When she was an infant, it was easy: she would hang out in her carrier or John would wear her while conducting, and she would sleep.  Now that she's an active toddler, and a nosy one at that, she wants to play and explore the church, which means she's not falling asleep until she's in the car and gets grumpy when we bring her into the house to get her ready for bed (hey, who can blame her for that?).  Coupled with the other reasons, John and I had some discussions and decided it was time to move on.

John is a bundle of nerves, which is normal for him when we're transitioning, but there are times when it's driving me nuts.  We only have a few more weeks with our current schedule, and then we'll all have to work on adapting to the new schedule.  One nice thing is that all of his rehearsals will be on one night, so with the exception of Worship and Music meeting nights, he'll be home with Judith and me more often.  He'll be able to drive to the church and practice whenever, our total commute time is cut in half, as is the mileage.  I'm excited, because the church we are going to has almost 5 octaves of bells, which means that if there is an opening and I can continue ringing, I might be able to save my wrists a little bit and shelly ring again instead of ringing 4-in-hand.  Judith is also going to have an opportunity to make some new friends, and I'm curious to see how she interacts with the children at the new church.

Of course we're leaving a lot of good stuff behind, along with some awesome people, including Judith's godparents.  We're already working on planning some activities so we can all see each other, and we promised that we would be back to visit every so often.

Wednesday, March 13, 2013

Great Strides

It's time for another post about donations!  We still need more to reach our goal.  Donating is easy: just click on the widget on the right, enter your amount, and click submit.  It's tax deductible, too!  So please consider donating to our team, and help us work our way toward a cure for CF!

Monday, March 11, 2013

All Done!

I'm using one of Judith's favorite phrases for the title of this post, because today was a big day for her.  We had a meeting with her service coordinator during speech because her coordinator wanted to touch base before her annual eval.  We discussed her progress, and decided that since she met and exceeded her goal, we would officially discharge her from services!  Speech was the last area she was showing delays in, so this means she is completely caught up, and the discharge is a total discharge from early intervention!

Of course we have the card and number for her service coordinator, and we can call at any time if we have a concern or want an evaluation for something, but unless she shows some serious regressions in an area we should be set and can close another chapter of her preemie story.

Thursday, March 7, 2013


Judith had her first appointment with the nephrologist today to check out the kidney stone they saw on her ultrasound when we were checking her liver.  The good news is it actually isn't kidney stones, but is actually calcification on the tissue of the kidney.  Her doctor said that they see it a lot in preemies, and that she should eventually outgrow the problem!  He did order labs to rule out some other things (I can't remember the names of the conditions, but he said that they're really rare in pediatric patients), and did a urine catch to check the levels.

Her appointment was in the same suite in the doctor's office building as the CF clinic, so I was glad that there was a little bit of familiarity for Judith.  She did freak out when she saw a different nurse for her vitals, but bubbles helped to distract her, as did her doll.  I was impressed that she did relatively well with the doctor since he was obviously a new face.  I was really expecting a full meltdown like we saw in the past, but I am so glad that we didn't have that!  I think she's finally turning a corner, and while she's still upset, she's starting to cooperate with the exams.  At the same time, it makes me a little sad that she's learning this lesson so young, because she has not had a respite from the constant poking, prodding, and exams.

Her weight gain is still really slow.  She's 23lbs 14oz, and 33" long.  I was hoping that she would weigh a little more, and with luck she'll break the 24lb mark by the time her next clinic visit rolls around in a few weeks.  I'm not surprised at her height, because she's been outgrowing her 18m outfits lengthwise.  It's becoming a challenge, because 24m and especially 2T pants are too big in the waist and don't stay up properly.  They're still a little long lengthwise as well, but at least they're getting some use this winter in the off chance that she won't be able to wear them again by fall (which, I'm kind of hoping, she will be able to wear them again since she's not growing as quickly).

Saturday, March 2, 2013

Giving Something New A Shot

The liquid bactrum, as expected, was as much a success as it was the last 2 times she had to take it.  So, not at all.  I even hid it in some tasty grape juice, and she thought it was more fun to hit the cup and spill grape juice all over the place rather than just drink it.  I called the clinic the next day and asked if we could get a re-issue of the prescription, and get pills instead.

I picked the new prescription up on Thursday, and so far we're getting a little more into her system than we previously were.  I'm grinding the pills up and hiding them in some applesauce, but she's still fighting.  Right now, I think we're moving more into the camp of "Hey, I'm a toddler and I'm going to act like you're pouring a cocktail of hot wax, lava, and 50 ghost chilis down my throat even though I know that's not the case."  But, at least she's getting something, and it's more than what we would've gotten into her with the liquid.  I'm still holding out hope that she'll cooperate in another day or 2 and start taking everything.

In other news, I'm excited to say that Judith can identify all 26 letters of the alphabet, as long as they're capital letters!  I credit the constant reading of Star Wars ABCs and Dr. Seuss' ABCs 50,000,000 times a day.  She's also pretty slick at identifying most of the characters in the Star Wars book, something that makes my inner nerd very happy.  She's able to identify a few lower case letters that look similar to their upper case counterparts (like o, x, and z), and is starting to identify some numbers (usually 8, 3, and 2).  It's always funny when I ask her what a number is, and she'll respond with "2."  If I say, "no, look again," she'll respond with, "not 2!"  Crazy kid.

She cracks me up regularly with the things she says, or the words she comes up with to identify objects.  Last weekend, she laid claim to one of our clips that we use to hang our tea towels in the kitchen (they're similar to this, but are different colors).  She brought it into the living room to show it off to my dad and me, and was calling it a "mystery."  I could not figure out what she meant until my dad said that it looks like a question mark, and she's associating that with the question mark they use for the Mystery Mousketool on Mickey Mouse Clubhouse.  It was pretty funny once I understood!  Now she runs around the living room showing off her "mystery," and started to identify the "mysteries" in her books.