Wednesday, February 27, 2013

Rough Day

I am so glad that today is coming to a close, and I'll be snuggled up in my bed sleeping very soon.  Normally I'd ask for a do-over, but I don't even want that.  Today was one big, giant, hot mess.  I've been fighting off a mild cold since Sunday evening, and Judith's been coughing since Friday (she also has a bit of a snotty nose, but no fever so I've been taking the "watch and wait" approach).  She's still working on those pesky 2 year molars, and on top of everything she hadn't pooped since at least Monday, possibly Sunday (I can't remember exactly).  She finally went late this afternoon and got some relief, but it was not a fun time, and the poor kiddo was hurting.  Needless to say, we're laying off the cheese for a little bit, even though she's getting some good calories into her system.

The cough situation was starting to drive me nuts today.  I kept second guessing myself, and after Judith puked on the floor and couch during her morning vest treatment (and I saw that it was predominantly mucus), I decided to call the clinic and see what they thought, and if they recommended taking her to her primary or to wait it out another day or 2.  Dr. G. decided to place her on an antibiotic since she's had the cough for a few days.  I was grateful that I didn't have to take her to her primary and risk picking something else up!  So now we're on a 2 week course of bactrum, and the fun is already beginning.  This time I'm not going to wait as long to see if she'll take it, though: if she continues to reject it after trying tomorrow, I'll call and see if we can get the prescription changed to at least a pill that can be crushed or a capsule or something.

Tuesday, February 26, 2013

Good News from Vertex

Earlier today, Vertex Pharmaceuticals, the company behind VX-809, announced that they will initiate the next phases of the trials for VX-809.  They are moving forward with Phase 3 for homozygous DF508 patients, and a shorter Phase 2 trial for heterozygous DF508 patients.  We're getting 1 step closer!  I'm remaining cautiously optimistic that the study results will continue to be favorable, and that we can start getting the drugs into the hands of part of the DF508 population as early as next year.

You can read the information from Vertex here.

Thursday, February 21, 2013

I Knew It Was Too Good To Last

Judith was doing really well with the new set of frames.  Almost too well.  She was on a good roll, but decided to end the streak today.

In a fit of toddler giggles and hilarity (at least according to her standards - I wasn't nearly as amused), she thought it would be awesome to stand on the couch and try to run away from me while I was trying to wrangle her into her vest for her morning treatment.  Why she thought it would be a good idea to climb and half dive over the arm of the couch is beyond me.  One second I'm listening to her laugh hysterically at me trying to chase her, and the next second she's flying over the couch and landing on her face on the floor.

Hand me my "Mother of the Year" trophy now, because I laughed pretty hard at her flipping over the arm.  What can I say?  I have a tendency to laugh when people fall, especially if they're not hurt (which Judith wasn't - she cried right away, and it startled her more than anything, especially since the distance from couch to floor is not that great).  Laugher turned to annoyance, though, when I put her glasses back on after she stopped crying and let me put her vest on.  Apparently her frames took the brunt of the impact, and were seriously lopsided.

So we made a totally unplanned trip to her ophthalmologist's office today to get them readjusted.  In the grand scheme of things, it's not a big deal.  I just wasn't planning to go out in the cold and windy conditions.  It was an easy fix for them, and the optometrist saw right away why we were there.  5 minutes later everything was adjusted to where it needed to be and we were on our way home.  This is another time where I'm grateful that stuff like this is covered under the warranty for her frames!

Saturday, February 16, 2013


I filed our taxes today, and was pleased that we're getting about the same amount in our refund as last year.  We are pretty excited, because we are going to make a small upgrade in our home, something that should benefit Judith and make our lives a little easier.

John thinks the carpeting in our living room and dining room is original to the house, so that would mean it's well over 20 years old.  I'm not so sure about that, but it's definitely possible.  Over the past 5 years, it's really started to look sad, and in the last year, year and a half it's gotten much worse.  Between general wear and tear from us, moving and rearranging furniture, and the dogs using the same trail between the living room and dining room as a drag strip, frays have developed, the carpet is bunching in places, and bald spots are starting to appear.  It's definitely time to do something.

For a few years, we've discussed what we would like to do with the flooring.  We tossed around the idea of getting new carpet, doing hardwood in the living room and ceramic tile in the kitchen and dining room, or doing wood laminate throughout the whole lower level, save for the powder room (the tile flooring in there is still in really good shape, and was only a couple years old when we moved in).  We're going to go with wood laminate, since we feel it'll be easiest for us to maintain and to keep clean.

It's going to be really, really nice to not have to try to get urine stains out of the carpet when one of the dogs misses the newspaper, and it should be easier to clean up all of the stray strands of fur that are constantly shed.  It's also going to be nice to know that we're getting rid of allergens and who knows what else that might be festering in the carpet or padding.  One of my fears is we're going to rip the carpet up and find some really gross stains from pet accidents (our own dogs and the former owners' animals), or worse, mold.  I have mold allergies, but I'm more concerned about the impact that any crud could have on Judith down the road.  Granted we don't keep her in a super sterile bubble all the time, but it will be nice knowing that our highest traffic areas won't be harboring an insane amount of dust, dander, and other miscellaneous things.  Also, it's going to spruce up our living space and make it look a little fresher and newer.

We're in the early stages of the process, and are only starting to look at styles we like, but I hope that we can move quickly with this and get everything installed soon.  Once we do that, we're going to start a bit of a clean out and reorganization of the spaces, and Judith will get her very own table and chair set so she has a comfortable space to color and do some crafts.

Friday, February 15, 2013

Big Girl Vitamins

Over the summer, we talked to Dr. G. and our nutritionist about possibly transitioning Judith to a chewable vitamin since she was doing relatively well with chewing harder things.  Right around the time we finished the opened bottle of liquid Aquadeks, she went on antibiotics for one of the MRSA infections on her skin, and refused to take the chewables.  Instead of pressing the issue with her, I decided to hold off until she was finished with the antibiotics, and things were delayed further after the latest round of bactrum and the new bottle of liquid vitamins that we had on hand.

The other day we finally finished off the last bottle of liquid.  Instead of ordering a refill when I knew we were getting low, I decided that we would try transitioning her to the chewable version again.  The first day was kind of a fail, because the vitamin is kind of big, and it was a lot for her to handle (she's a fairly dainty eater, and typically likes her food presented in small chunks).  Day 2 I tried breaking it in half, and we had success!  She's still a little hesitant at times, but is adapting well to the change.  I'm pretty excited that she's able to take "big girl vitamins," even if that does mean she's growing up fast.  The liquid Aquadeks, while necessary for her to take, stained a lot of the things it came in contact with (clothes, skin, plastic, silicone), so it's kind of nice to be able to move away from that.

Sunday, February 10, 2013


Seriously, these 2 year molars need to make an appearance soon.  We have to be going on 5 months of this crap with no results.  I think we're getting close, because she is jamming her fingers into the back corners of her mouth and chomping on them with a lot more enthusiasm than she has in a while.  In the meantime, she's been a hot freaking mess, and driving me absolutely bonkers.

Wednesday, February 6, 2013

Another Eye Appointment

There's nothing better than having a follow up appointment with a toddler who behaves so, so well, and hearing the ophthalmologist say how pleased she is with her progress!  It's somewhat comforting to know that being on our 3rd pair of frames is normal at this age: the first pair Judith used as a teether, and gnawed off the end of the silicone on the ear piece, leaving the springy wire exposed.  The second pair she bent the wires on the ear piece so much that it was ready to snap.  Thankfully they had the new frames in the office in less than 24 hours, and we've had them for a week (so far, so good).  Anyway, the doctor checked to make sure Judith isn't favoring one eye over the other (she isn't), and said that if she continues to do so well we'll space out the appointments a little more after we have her next annual exam.  We'll go back in 3 months for another check, and hopefully she'll continue down the good path she's on!

Tuesday, February 5, 2013

Great Strides

We're taking donations for team Journey for Judith!  Remember, all of the money raised goes to the Cystic Fibrosis Foundation, and in turn is put toward various things, most importantly toward research and the studies for the many drugs currently in the pipeline like VX-809.  Donating is easy!  Click on the Great Strides badge at the right and enter your donation amount.  Help us reach our goal!