Tuesday, January 31, 2012

It's A Monumental Day in the CF Community

Today the FDA approved Kalydeco, a new drug that will help CF patients with the G551D mutation.  You can read the article here.

It's a bittersweet moment.  This drug will only help 4% of the CF population, and for those with this mutation, this is huge news for them: they will have an even better chance at living a normal life.  For us, as it is for the remaining 96% of the population, it's still a waiting game.  Since Judith does not carry a copy of this mutation, the drug won't help her.

Things are in the early stages of working on a drug for the DF508 mutation (which Judith has), but we don't know how long it will take for this to become available.  It has to go through all of the courses.  Maybe we'll get lucky and this drug will be released by the time Judith would be eligible to receive it.

I'm happy for the parents and children who will benefit from this drug - I truly am.  At the same time, I wish we were the ones able to have the elation and hope for something that's as close to a cure as they've come so far.

Monday, January 30, 2012

Another Eye Exam with Good News

Judith had a 3 month follow-up exam for her eyes, and we got some good news!  Things are looking much better - no noticeable changes in her vision, but the marks on her eyelids and the redness that was detected in the corner of her eye are faded or gone.  The doctor didn't do a full exam on her since she just had one, and it was too soon to really need a thorough exam again.  We can wait to go back until after mid-September, when she'll be due for her next annual exam!  She's so borderline for whether or not she needs glasses, and the opthamologist still feels comfortable holding off on corrective lenses.  I'm relieved that we don't have to worry about Judith ripping glasses off her face/throwing/breaking/losing them for quite a while yet!

I noticed yesterday that she had some drainage from her left eye again, but naturally it went away and the doctor didn't detect anything during her mini-exam.  So I'm going to keep an eye on it myself, and if it increases or gets worse, I'll call her regular pediatrician and have them take a look at it.

I'm keeping my fingers crossed that we can hold off for at least another year before worrying about glasses - we'll wait and see what the exam in September says.

Sunday, January 29, 2012

Ouch Update (haha)

Our biting situation is getting a bit better.  I'm working on creating an arsenal of supplies to keep handy for entertainment purposes (apparently Anderson Cooper isn't entertainment enough during those morning CPT times), so we'll see what they can do to help turn things around.  Videos and whatnot will probably become therapy treats around here very quickly.

Judith made an attempt to bite my dad last Thursday when he did her CPT (his work schedule finally worked out so I could actually accept one of the teaching days I got called for), but he was able to avoid those little razors.  She started to go after my arm once on Friday, but for some reason stopped.  And after seeing what I saw this afternoon, I may have a reasoning for a small part of the problem: tooth #8 is queued up and ready to rupture through the gums very, very soon.  We're talking a full-blown pit where that sucker will make it's appearance within the next 24-36 hours (based off of her pattern from when I actually notice the pit).  And as a side note, if you never noticed this phenomenon while your child is teething, it's kind of freaky to see.  There's nothing more bizarre than seeing a small hole in your child's gum, then seeing the first portions of a tooth poking through a day later.

Anyway, we currently have 8 small bottles of bubbles that were purchased yesterday at Wal-Mart (4 packs of which will make their way to my parents' house so they have some there), and I want to try using those as an extra treat - the nurses at the CF Clinic will sometimes use bubbles to distract Judith when they're taking her vitals, and she really seemed to enjoy them.  Fingers crossed that the novelty doesn't wear off too quickly, but if she's anything like me that novelty will never wear off.

We'll see how this goes - with any luck, she'll keep her interest in these new things long enough to give me time to think of some backups when stuff becomes stale.

Thursday, January 26, 2012

Spring Fever!

Considering the bulk of this winter so far has felt more like spring, I don't understand why I'm getting antsy for warmer weather.  I think looking at the spring lines of smocked clothing is doing it though - I can't wait to get some new, cute outfits for Judith, and I want it to be warm so she can wear them.  I pretty much have her Easter dress picked out, in addition to a small handful of other outfits that will be absolutely adorable for church and stuff!  I really want to shop for shoes, but I know that's something I'll have to wait on - I feel confident that she'll be walking by Easter, so she'll need shoes with a decent tread or grip on the bottom.  And I'm not quite sure what size she'll need either, so there's that.

Personally I'm ready to break out my cute sun dresses and sandals.  I really love to wear sweaters, but I'm ready to put them away until next year.  I'm sick of bundling up, and I'm ready to open the windows and air out the house.  I miss fresh air.

Maybe if it snowed a little more, I wouldn't be quite as antsy, but until winter decides to act more like, well, winter, I don't see the drive for wanting spring here now leaving anytime soon.

Monday, January 23, 2012


There has to be a better way to accomplish things while we're waiting for miss peanut to gain more weight.

I'm talking about her CPT.  Doing this stuff manually is driving me insane!  On top of the incessant escape tactics Judith keeps trying, she is now biting my arms during therapies.  The only time she doesn't do this?  When she's completely sound asleep... at about 8:30 at night.  It's so damned easy to do it then, for obvious reasons, but any time she's awake it's an all-out battle.

I am at my wit's end trying to figure out new ways to keep her occupied for the entire 24 minutes it takes us to do her CPT.  Toys to chew on are boring her.  The dogs and the Weather Channel don't even entertain her anymore.

I don't know why I'm surprised by this.  She's mobile, she wants to explore as much as she can, and getting the junk clapped out of her lungs twice daily is old news.  She's acting like a typical toddler with the attention span of a dust mite, and that's normal.  The welts on my arms from her biting me are declaring another theory though.

For the sake of my skin, these last 4 lbs. can't come fast enough.

Saturday, January 21, 2012

Snow & Sweaters!

Buster & Lady gave their new sweaters a whirl today!  They look absolutely adorable in them!

Buster's sweater has a pocket on one of the sides, but he wouldn't give me a good profile shot.

Judith got to play in snow for the first time today!  This isn't her first snowstorm since she's been home, but it is the first time we took her out to explore.  She had a very take-it-or-leave-it attitude, and was honestly more interested in watching the landscapers shovel, snow blow, and plow in our development.

Thursday, January 19, 2012

A Get-Together and Milestones

Today Judith and I met up with one of my friends, Amy, and her 3 children!  We had some lunch, and the kiddos spent at least a good hour playing in the play area.  While this isn't the first time Judith's been to a park/play area, it is the first time that she could really do more than just swing (not that they had swings haha): she crawled all around the space, stood up at the walls/windows and explored them by pounding on them, drummed on the climbing equipment, and actually figured out how to climb up on the lowest play thing designed for toddlers!  It was so awesome to see her doing this!  She also did some people watching, but, as expected for this age, didn't play with anyone.

Amy took up crocheting a little while ago, and she shared some pictures of a cute dog sweater she made.  So I asked her if she could make sweaters for Buster and Lady, and she did!  Amy is super awesome, and the sweaters are adorable!  I'm going to take pictures of them in the sweaters this weekend, and I'll post pictures as soon as I can get them loaded.  We talked a little bit about crocheting, because I never learned how to do it, and thought it looked like a relatively easy hobby to pick up.  Call it peer pressure or whatever, but I'm going to give it a whirl and see what I can do!  I'm not the craftiest person, so I'm hoping that this will go smoothly for me, and I can add crocheting to my very short list of crafts I can do (counted cross stitch and scrapbooking are about the only other things I can do semi-decently).

I was so glad that we were able to have a few hours together to sit and talk, and to allow the kiddos to interact with each other!  We had a blast, and I can't wait until we can do it again!

Judith has developed a few more milestones: she just cut another tooth, this time on the bottom, and it feels like there's another bottom tooth working it's way to the surface.  Total tooth count right now is 7 - she's a tooth cutting machine these days!  She's still babbling a ton, but we're still waiting for her first word to come out.  She's cruising around, using the furniture as a support, and is starting to take some steps assisted (by holding on to our fingers).  She can climb the whole way up the stairs, but still needs some assistance coming down.  This one I was so excited for: she's finally clapping on her own!  She's a stinker about it though, because she'll smile and clap if I have to pull her away from something she's not supposed to have - I can't help but laugh when she does this.  I'm sure it won't be quite as amusing in a few years, but for now I feel safe in enjoying it.

Thursday, January 12, 2012

Great Strides

First of all, you'll notice that I made a few changes to the ol' blog layout again.  Hopefully I'll be satisfied with this for a bit, until I get bored with it and want a change.  One of these days I promise I'll find something I really like and will keep it for a long time!  I did change the title of the blog (the URL will remain the same) - when I started writing, we had no clue about the diagnosis that would lay ahead for Judith, so the old title was fitting.  Now, though, I felt like I was excluding something that is unfortunately such a big part of our lives, and I want new readers to know that our story isn't just about a preemie and her 2 pups.  Hence the addition of "65 Roses" to the title.  I realize that I don't have to explain any changes to anyone - it's my personal choice, after all - but I would like people to be aware of the meaning of "65 Roses."  If you are not familiar with it, the story behind the nickname can be found here (clicky).

And now to the main point of this post: the upcoming Great Strides walk!  It seems like it's so far away, but I know it will crop up on us quickly.  If you take a look to the right, you will notice a new (more like new-ish) addition to the sidebar: a donation button for Great Strides.  We do, in fact, have a family team for miss Judith, and we will be walking in one of the local walks.  If you would like to donate to our team and help find a cure for cystic fibrosis, simply click on the button and select the amount you wish to donate.  Super easy!  You can donate now, if you choose, or you can donate later.  You can even donate after the walk takes place!  Nice, right?

I am excited to be able to meet more mamas who have children with CF - I have a few mommy friends, in real life and online, that are a great support, but it's always nice to have a larger network of people who understand exactly what you're going through.  I am excited to be able to raise money to go toward research that will help find new ways to treat the disease and hopefully find a cure.  I'm excited that a bunch of my friends, along with family, are signing up to walk with us and are setting their personal fundraising goals to help.  This is kind of a big deal for me, because I want the world to see that my little miracle is a fighter - a little CF warrior.

Hopefully, and I'm keeping my fingers crossed, Judith will be able to attend the walk with us.  If she gets sick, she won't be able to come, for her protection and for the protection of everyone else.  Knock on wood, she does not carry the bacteria that would automatically prevent her from attending (healthy or not), and hopefully it stays that way!

Friday, January 6, 2012

Antibiotics are Done!

Fingers crossed that we can avoid respiratory infections for a while.  So far, so good - we finished the Cipro for Judith's sinus infection this morning, and the congestion and cough are gone.  We dropped her CPT and breathing treatments back to the normal schedule, and her appetite seems better.  Knock on wood, it looks like we avoided some of the antibiotic-related diarrhea this time as well.

There's still a long way to go before we get to the end of cold/flu/RSV season, but I'll take as many healthy days right now as we can get!

Wednesday, January 4, 2012

Synagis, Round 3!

We had yet another nurse visit for Judith's monthly Synagis injections, and it was an interesting visit (humorous for me, actually).  Since I didn't want her to be stuck too many times at her 1 year well baby, we delayed giving her the Hepatitis A vaccine until this visit.  So instead of 2 injections, Judith had to get 3, and now we're caught up again with her vaccines!

Judith started off the morning by throwing a fit in the car because she didn't want her hands covered.  Screaming like a banshee is apparently the new way to express this desire.  It was about 15 degrees out, so there was no way I was uncovering them for the car ride (that, and because my car's old it can take a while for the heat to really get going, even after allowing it ample time to warm up).  I tried reasoning with her, but the only thing that worked was driving, and a little more than halfway there she gave up and relaxed.

We entered the pediatrician's office, and I took off her cold weather gear, and she was relatively happy, yet very serious-looking - this is her new thing to do, looking serious whenever she's in a doctor's office, church, etc.  The nurse called us back, took us to the exam room, and asked me to strip her down to her diaper so we could get as accurate a weight as possible (as I believe I've mentioned before, they base the total dosage for Synagis off of her weight, so a naked weight is necessary).  Judith decided to try something new this visit: screaming her head off like Voldemort was lurking at the scale, waiting to hit her with a cruciatus curse.  Normally, the kiddo will roll over and try to crawl all over the scale, so I'm used to her giving the nurses a hard time at weighings, but this was hilariously ridiculous.  I'm laughing at her, and was baffled at the same time - I'm hoping this isn't going to be the new normal every time we go in there for something.  The good news is she now weighs about 18 lbs, so she's still gaining (yay!).

Naturally she screamed when she got the shots, but what kid wouldn't?  The synagis is definitely the more prolonged torture of all of the shots, and I feel bad for her, but hey - you do what you gotta do.  I'm starting to wonder if she's at the very early stages of association with things - she did hear me mention "shots" and "synagis" a few times this morning, and once she saw the nurse that usually gives her the vaccines, she tensed up.  It's going to be interesting to see how she reacts when we go back next month for round 4.  Her reactions today could very well have been a fluke, so we'll wait and see.