Friday, January 23, 2015

Our 2015 Video Is Here!

Check it out!  I have it embedded in our side bar as well, so if you want to watch it later or show it to someone later, you don't have to search for this specific post.

Appointment Week

We didn't have appointments every day this week, but we did have 2 scheduled, and on top of everything else right now, it led to kind of a chaotic week.

The big appointment was the quarterly clinic visit, which overall went really well.  Judith did lose another few ounces, and is down over half a pound at this point, so while they're concerned, it's not at an immediate action point.  She was 31 lbs 7 oz, and her new BMI is 17%.  Since she's been sick, that could be contributing to her loss of appetite, and we're waiting to see if she can regain the lost weight once she's feeling better.  Because her cough is starting to come back, and because she's still pretty congested, she's on another round of antibiotics to see if we can fight off whatever else might be brewing.  We're trying something different, and avoiding the bactrim for now, so she's taking azithromycin for 10 days.

We're going to have to go for a sleep study at some point, because Judith's snoring at night is getting worse.  Granted part of it is due to the congestion, but even when she's not congested, she'll snore.  Dr. G. wants to rule out obstructive sleep apnea, which is apparently very common in young kids, and often gets worse/peaks around Judith's age.  Depending on what the results of the study are, she might need to have her tonsils and adenoids removed.

The other appointment was this morning, and that was a repeat hearing test ordered by her PCP.  Judith didn't quite understand what to do with the test they run in the office, and she wasn't fully cooperating, so they wanted to double check and make sure she's hearing the tones she should be hearing.  Part of the concern also stems from all of the antibiotics she was on while in the NICU to fight off the various infections, because some of them are known to cause hearing loss in preemies and term newborns.  She passed her previous tests, but we wanted to make sure that we didn't miss anything or something started to manifest after her previous test before she turned 1.

She was actually really cooperative today, and the audiologist said that things looked pretty good!  The activities they did with her to get her to respond to the sounds she was hearing were much better than the typical "raise your hand when you hear the sound in your ear" that her pediatrician used (or in other words, how many of us did it during our hearing tests in school).  I was pleasantly surprised at how long she was able to focus!  I'm waiting for a call from her PCP at some point to go over the results more extensively, but we know she's hearing the majority of stuff, and when she ignores us it's more of a selective deal.

Monday, January 12, 2015

Big News From Vertex

Today's press release from Vertex is causing quite a buzz in the CF community, and that's because there is an anticipated review for acceptance date with the FDA for VX-809 (lumacaftor)!  July 5, 2015 is going to be a big day for approximately half of the CF population who carry 2 copies of the F508del mutation!

This is why we, as CF families, work hard to raise money for research, and to help scientists work on finding a cure.  These drugs are NOT a cure, and people taking them still have CF, but they're game changing drugs, and will allow CF patients' cells to have some CFTR function, therefore minimizing/slowing down the progress of damage from the disease.

You can read the full press release here.

I have to say that while this is exciting, I can't help but feel bittersweet about it.  Some of my friends' children will benefit from this, either now or soon once the studies are completed in the 2-6 age bracket, and I'm happy for them that their moment is coming.  But it's a major let down to know that we're still in a holding pattern, waiting to see what the studies show for people like Judith who carry 1 copy of F508del.  VX-661 still seems to have better results for these patients, but it still has a way to go in the study process before approval can even be considered.

I know that Judith, and others like her, will have their moment eventually.  The waiting is the worst part.  But in the meantime, we're going to take a moment to celebrate with the entire community, and rejoice that half of the population will very soon have access to these drugs!

Thursday, January 1, 2015

Happy New Year!

From our family to yours, we want to wish all of you a safe, happy, and healthy 2015!

Reflecting back on the last year, we've definitely had some ups and downs.  The biggest kicks in the pants were Judith needing the second clean out in July, and the situation with the former buyer for our house.  Feeling like we've been living in a museum and not getting a lot of results with our house for months was frustrating, and frankly still is frustrating, but with the new year upon us we're hoping that things will move quickly and we can get this house sold.  There were so many positives as well, though: being able to go to parent support group meetings for our clinic and chatting with the other parents there; the Great Strides walk last May; Judith getting a vest machine that is working much better for her; and seeing her make some great gains with weight back in October.

2015 holds a lot of hope and anticipation for us.  Obviously selling our house is a big one.  The CF community is anticipating the approval of VX-809 for people with 2 copies of DF508, and the studies continue to progress with VX-661.  The big renovations at our church are expected to start soon, and while it's going to mean a lot of dust for a while, the changes and updates are really exciting!  And next fall, Judith will hopefully go to preschool so she can get a better handle on the social skills she'll need for kindergarten.

The odds of us being busier than normal this year are good, but that's ok.  If this year can be better than last year, I'll call it a win.

Tuesday, December 30, 2014

4 Year Well Visit

Judith had her 4 year well visit this morning, complete with booster shots.  I wasn't sure how things would look because she's been fighting off a cold, but her ears looked good and her lungs sounded clear.

This year was the first year that they did a vision and hearing test on her.  Everyone thought the vision test was ridiculous because we know she has vision problems and is clearly being followed since she's wearing glasses, but because we have secondary insurance through medicaid (our state has a Katie Beckett Waiver lookalike program, which means kids who have CF and certain other conditions automatically qualify for the program, regardless of income) they had to do it and submit the results.  I didn't even think about the fact that our ophtho doesn't accept the medicaid plan that we need to have for her primary pediatrician, therefore they wouldn't know that she's being followed at least bi-annually (quarterly right now) by a specialist.  We did the best we could with the vision test, and I'm sure they'll make a note about how we're already being followed.  The hearing test was interesting, and Judith didn't quite understand what she was supposed to do.  We were finally able to get her to tell us if she heard a sound instead of raising her hand like they wanted.  She didn't fail the test, but it wasn't stellar either.  Her PCP wants us to see an ENT and get a more comprehensive test to see if there is something going on or if everything is indeed ok.  Some of the concern is stemming from the antibiotics she was on in the NICU, particularly those that she had to take to get rid of the late-onset group B strep infection.  So it looks like we'll be adding another specialist to our list.

Judith's eating habits have been poor lately, so I'm not surprised that she lost about half a pound since her October clinic visit.  Today she weighed 31 lbs 8 oz, which puts her at the 25%.  She did grow again, and is now 39.5", which puts her smack in the middle of the curve at 50%!  2, 3, and even 4 years ago I wouldn't have guessed that by age 4 she'd be that high on the curve for height, so it was a pretty awesome percentile to hear!  The downside, though, is her BMI.  I calculated it on the CDC's website (you can find the calculators here if you're interested), and she dropped back down to the 13%.  Clinic is a little less than a month away, so we'll see what things look like then, but it's pretty discouraging to see her have such big gains 2 months ago, and then suddenly slip back to where she was in such a short time.

I opted to get both sets of boosters for Judith at this visit so we could get it out of the way.  The vaccines were combos, so the MMR and varicella were combined, and the DTAP and polio were combined, so only 2 needle sticks, which still was akin to torture according to Judith.  She cried more before the shots, stopped as soon as it was over, then got overdramatic and held her arm as stiff as possible, acting like she couldn't use it at all.  Silly kid.

Despite the few blips, the appointment was a good one, and her pediatrician is pleased with the progress she's made in the last year and is impressed with how well she is doing with her CF.

Wednesday, December 24, 2014

Buying and Selling

I wanted to wait until I had my laptop fixed to type this whole story up, because it’s going to be long and would’ve been a pain to type out on the iPad.  Yes, I could’ve used my wireless keyboard, but we’ll ignore that little fact because I also simply kept forgetting.  :)

Back in mid-November, we started to get showings on the house.  Within the span of 1 week plus 1 day, we had 2 showings, and the 2nd showing resulted in an offer on our house.  We were surprised that, after being on the market for about 5 months, we suddenly got some interest, and were thrilled at the offer.  Negotiations lasted a little more than a week because of some delays with the man putting in the offer, but we got to a point where we knew we’d be signing the paperwork to go under contract, and scheduled showings to go look at properties so we could get under contract on a house to buy.

We found a house that we really liked, and it was in fantastic shape.  The sellers were willing to be a bit fluid with closing dates, and we set closing for the date we knew we’d be closing on our current home, but they were aware that we might have to submit an addendum to bump up the closing date since our buyer really wanted to close as quickly as possible.  Inspections were being lined up on the properties, and John and I thought we were crazy for trying to close on December 19th or December 30th since the holidays are notoriously a 3 ring circus around here.

Fast forward to Thanksgiving Eve, and our realtor gets a call from our buyer’s realtor saying that our buyer wanted to back out of the deal because of an “issue” he was having with his son (before you think I’m being totally callous, the issue is not related to special needs, but to some poor decisions, and as you’ll see later, makes me question the legitimacy of some of this anyway), and a supposed denial of funds from another source.  Our realtor called me the Friday after Thanksgiving, while I was packing, to update me.  Cue freak outs on my part and John’s part.

We were able to work things out, and since our house is USDA loan eligible, the buyer was able to change his mortgage type and get established with that particular loan type.  That also meant closing would be bumped to mid-January, and the new closing date of January 16th was set.  While John and I were hoping to move either right before or right after the holidays, this actually worked out for the better because of the government holiday on the 19th for Martin Luther King, Jr. day, which means John wouldn’t have to take additional PTO to help unpack.

Our realtor got the earnest money check, and after verifying funds, cashed it so we could keep the process moving.  We thought we’d have to postpone the home inspection on the property we were buying, but after hearing things were good to go, we decided to go through with our home inspection since John already had the time off, and he wasn’t sure if he’d be able to take another day off before our inspection deadline.  Our mortgage broker was getting the appraisal lined up, and things appeared to be back on track.

1 week later, the shit hit the fan and we get a phone call from our realtor, saying that the buyer’s realtor called him to let him know that the buyer “cancelled” the earnest money check, and she couldn’t track him down.  Our realtor was on the phone with the buyer’s mortgage lender, seeing if they could track him down as well, and he also tried to contact this guy.  No luck.  John and I were crushed and pissed, because we knew that we now lost the property that we fell in love with and were going to purchase, but we were also out the costs of the home inspection that we just had done a few days prior.

As if things couldn’t get any more bizarre, a couple days later, our realtor called again with an update and it turns out that the buyer actually wrote a BAD CHECK.  I instantly went from being upset, feeling very guilty about backing out of the deal with the other sellers even though our contract was specifically written with the contingency of sale on our current property, and slightly pissed about the whole situation to flat out raging!  This guy was shadier than a tree in summer, and he knew exactly what he was doing, so it’s no surprise he hightailed it off the grid and made it so no one could contact him!

Because of the way the contract was broken, the deposit was supposed to be forfeited, which meant we would’ve recouped the money we paid for the home inspection on the other property.  People at our realtor’s agency were also pissed, and they decided to go after the jerk for what he did.  I know that they were going to place a judgment on him to try and get the money due, but when we’ll actually see that money (if at all) remains to be seen.  At least we get our earnest money back from the other property, otherwise I really would’ve gone Hulk on the former buyer because that’s a huge chunk of change that we would’ve lost.

So we’re back on the market.  We had an open house a week and a half ago.  1 person came, and it sounded like he’s at least marginally interested in the property, but no offer yet.  The market is expectedly and understandably dead right now because of the holidays, but we’re hoping that the weather will hold after the new year and things will pick up in January or February.  We’re not worried about selling, because it’s going to be a matter of when, and if we don’t get back under contract soon, we have the benefit of being on the market in the spring when things are the busiest.

We’re also not incredibly worried about finding a house to move into.  We fully realize that the likelihood of the house we were going to buy being on the market once our house is under contract again is slim, but the sellers and their realtor said that if they’re still on once we’re under contract, they would be happy to accept our offer again.

I’m usually not a fan of this saying, but with everything that went down, we do feel like that maybe this was a sign that that particular house wasn’t “the one” for us, and “the one” is either on the market, waiting for us to go under contract, see it, and place an offer, or isn’t even on the market yet.  We’re doing our best to view the positives in this whole situation.  Trying to explain all of this to Judith, though, has been interesting, because she was getting excited to move and doesn't understand why all of the boxes went back into the basement and we had to re-stage everything.

So that’s what we’ve been up to.  An already crazy time was made even more chaotic with the bullshit from the former buyer, and in a way I’m rather relieved that we don’t have to deal with his shenanigans anymore.  I’m still a bit salty about the whole situation, and it kind of killed our holiday spirit, but we’re doing our best not to let it get to us too much and to just enjoy ourselves.

Wednesday, December 3, 2014

Judith Is 4!

A couple months ago, I was thinking about party plans because I knew Judith's birthday was coming up, but time really flew by, and here we are. Each birthday has been interesting emotionally, but this year I didn't have my normal thoughts about all of the events that led up to Judith's birth,save for 1 moment on Monday when I commented that the weather did the same freaky thing that it did exactly 4 years ago to the day: unusually warm temperatures in the mid-60s with rain.

The last couple of days, though, I had a mind blowing realization that helped put some things in perspective. At her last weigh in, Judith was 32 lbs. I'm not sure what her current weight is since we did not have her well child visit yet, but regardless, that means she is at least 16 times her birthweight. 16 times! Considering how much she's struggled with weight gain from day 1, having that figure sink in made me realize how far she has come in the last 4 years. Yes, the road has been frustrating, to say the least, but today I could put aside the stress and frustration over getting her to and maintaining a good weight for her health and celebrate her progress!

4 years ago, it was hard to imagine the future, even one as "close" as today. We were so focused on her survival and obtaining the ultimate goal of discharge from the NICU that I never imagined I'd have this sassy, funny preschooler who loves to talk, who is obsessed with Thomas & Friends and VeggieTales, and is such a bundle of energy who wears me out by dinner time each day. There is still a long, long road ahead of her, and many battles left to fight, both with some lingering preemie issues and with CF, but for today we pushed all of that aside and focused on her accomplishments and who she has developed into.

Happy 4th birthday, Judith!