We Have Weight Gain!

Yep, that’s right! Little Miss Sassypants is maintaining her weight, and even gained a little more since her pulmonary appointment in April! Woot woot!!!

Dr. M. was really pleased with the progress she’s making, and we’re now officially out of the “danger zone” for her BMI. Her percentile dropped very slightly, but she also added almost an inch to her height, so that’s going to mess with her BMI and all.

John and I were prepared to push for the g-tube, but we’re in agreement that it’s ok to hold off for now, and just keep working to make sure Judith keeps her weight up with a high calorie diet. We read her the riot act last night, and told her that she’s going to have to cooperate and make sure she eats, otherwise she’ll lose weight again, and then we’ll have to go forward with g-tube placement surgery.

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Car Update

Exciting news in our house: we got a new car!

I’ve had it for a week today, but didn’t get a chance to update the blog because this past week was bananas. John and I are the proud owners of a brand spankin’ new Toyota Prius C!

It’s actually a 2015 leftover, and was driven off the lot with 21 miles on it (before I test drove it, it had 18 miles, all from previous test drives). Since it was a leftover, we were able to get an awesome deal on it, and during the month of April, Toyota was also offering some crazy awesome financing incentives, so we couldn’t pass up the opportunity! Our timing was perfect, too, since we purchased it on April 30… the last day for that deal.

I’m so damned excited to finally have my Prius, and I’m already amazed at the savings in gas! Yesterday I finally went below half a tank, but that tank also had 4 longer distance trips on the highways, so that’s pretty damned awesome. The Scion gets great gas mileage, but even in that I would’ve had to fill up the tank by now.

Why did I go with the Prius C? Mainly because I’m a fan of smaller cars, and really high MPG ratings. I looked at the Prius V again, and while the cargo space was a huge perk, it was just too big for me. I was also able to test drive a regular Prius last Saturday, just so I could compare it to the C (which I instantly fell in love with, because it’s the same size as the Scion, with the same amount of cargo space, and handles the same). The regular Prius is slightly bigger, but the huge dealbreaker for me was the location of the spoiler piece. I’m sure you’ve seen a Prius on the roads, and know which piece I’m talking about: the one on the rear window. The Prius has a large back window, but that piece slices right through the middle of it, creating a blind spot and a big distraction. I get why it’s there, because of the whole aerodynamics thing, but Toyota may want to reconsider a re-design to see if that could be eliminated. Granted it’s probably not a big deal to a lot of people, because I see a ton of regular Prius cars on the road, but our sales guy (who is a good family friend) said that the placement of that piece is a huge complaint for many people.

The other nice thing about my Prius C is that it’s not fully loaded with every package you can think of. It has the basic things I wanted: bluetooth, touch screen capabilities, Smart Key system, and ECO mode. There are some additional perks, like the on-board navigation, but there aren’t a ton of bells and whistles on it that I would likely never or would rarely use. To be honest, I probably won’t use the on-board navigation much, except to see where I’m at, because I prefer my Waze app that has way more features.

Judith is in love with this car, and wants to ride in it all the time. Normally she’s begging to go with John whenever she can, but last week she looked at him and told him she doesn’t want to ride in his car anymore because she likes the Prius better. Little stinker. At first I thought she’d protest, because she was adamant about me getting a purple car, even after I told her I was not paying for a custom paint job so we could get a purple car (as awesome as that would be). Once she saw that it’s a tangerine orange color, she completely forgot about her request for purple, and declared her love for the actual color.

The real test for gas savings will come during our next trip to CHOP, and I can’t wait to see the comparison of gas consumption when we’re stuck sitting on the Schuylkill due to heavy traffic volumes.

Cars

It looks like we’ll be getting a new (probably not brand spanking new, but a good, used car) car.

Background: A few years ago, my grandmother finally admitted that she can’t drive safely anymore, and surrendered her driver’s license in favor of a regular state-issued ID. She and my grandfather bought a 2000 Buick Regal that was a former lease, and that was their last car. It was a good car, and I remember driving it around the summer right before my senior year, because I didn’t have my own car yet. The only issue I had was the placement of the pedals, which were practically on the front bumper. For someone who is short with short legs, that meant I had to practically sit on the steering wheel and do some fancy configuring with the seats so I was able to comfortably reach the pedals. Everything else was awesome, especially for the time because it was really luxurious.

Anyway, at the time my grandmother made this decision, I was driving around a 1996 Geo Prism that was starting to have a lot of issues. Our 2006 Scion xB was in fabulous shape, and I was driving it to appointments at PSHMC instead of taking my Prism. John really loved the Buick, so we decided to make an offer to my grandmother. We sold my Prism, and got the Buick. It was technically my car, and is registered in my name, but John and I switched our main vehicles and ended up driving the other person’s car on a regular basis.

Fast forward to Friday. I get a call from John in the morning, right as he arrived to work, telling me that the Buick stalled on him in the middle of the damned parking garage, right as he was going up the ramps to get to the next deck. He managed to drift it off to the side and put a bag in the window with the hazards on, but I knew we’d have to call AAA to get it towed. The stupid car didn’t show any lights indicating what might be wrong, and the mechanics are taking a guess that it’s the fuel pump. Now, we already put $1100+ into the Buick back in January for it to pass inspection, and that’s just scratching the surface of the amount of money we’ve put into repairs so far (that’s excluding the money my parents and grandmother put into it to get it running properly before we bought it). The estimate for the fuel pump was almost $850.

Holy shit.

I was expecting maybe $500, but not almost $1000. The timing is extra shitty, because I had to get new front brakes and rotors on the Scion, and that was an additional $500.

We’ve put more money into this blasted Buick than we ever anticipated. The car is 16 years old, and while it’s still low mileage, it’s way more trouble than it’s worth. John and I talked about it, and decided it’s time to wash our hands of the Buick and get a new car.

Since John technically got the first new car (we weren’t married yet, but were engaged) when he bought the Scion, I said I get a chance at having a newer car. Once the Scion is done, and that’s going to be many years from now because those suckers are crazy reliable and run forever, he’ll get the next new car. I’ve been browsing for years, knowing I wanted another Toyota, and I’ve always had it narrowed down between a Prius and another Corolla (my first car was a 1990 Corolla, and I loved that car). At this point, though, I have extra considerations to think about, like cargo space. Lugging Judith’s equipment around is a pain in the ass, but obviously necessary. She has a few years to go before she’ll be able to start using a flutter device for airway clearance, and be able to do it properly, so for now we’re stuck hauling the vest everywhere. Since I’m the one who’s driving her around the majority of the time, we need a car with a decent amount of cargo space.

This gets tricky, because at this point I’m anti big cars. I love, love, LOVE driving the Scion around because it’s so compact, and for a small car it has a surprising amount of cargo space, particularly with a seat or both seats down. Whenever I drive a bigger car, be it a sedan, wagon, van, etc., I feel like I’m driving a yacht. Something like a Toyota Yaris or a Honda Fit would be right up my alley, but trunk space is very limited, and it would be rough trying to cram all of Judith’s stuff in there.

Yes, I realize a regular Prius and a Corolla aren’t exactly the epitome of tons of cargo space. The thing is, they have at least the same amount of cargo space that I currently have in the Scion, and I’ve made it work in there for years. So as long as the car has at least the same amount of trunk space, I’m good.

Fuel economy is another huge sticking point for me, if not the biggest. The Scion gets a good 35 MPG, which is fantastic. But ideally, I’d like that to be higher. That’s why the Prius has always been very attractive to me. I do try to be environmentally friendly when I can, preserving natural resources and reducing emissions, etc. Plus with all of the city driving we’re now doing makes the allure of a hybrid even more thrilling. So it looks like we’re going to get a Prius.

I did test drive a Prius V yesterday. That sucker was loaded, and all of the bells and whistles were a bit overwhelming, but at least it gave me a good idea about what I’d like to look for as far as those types of packages go. The Prius V is more like a station wagon, and is quite roomy with lots of cargo space. However, when I was driving it, it felt huge. I’m sure I could adapt to that rather quickly, and I’d be fine, but the regular Prius is still attracting my attention more.

We’re shopping around, looking for the best price, and are also shopping for the best rates on auto loans. John said that he doesn’t want to wait too long, though, because we want to unload the Buick before it starts costing us even more than it already has. So I’m really hoping that we’ll be able to have our new car by the start of summer.

Spawn of Satan

So since Judith’s weight hasn’t made a huge improvement, her GI decided to try an appetite stimulant to see if that would help her gain more. Granted Judith did gain almost 2 lbs. when we had her at the pediatrician, and that put her back up to the 2nd percentile for BMI, but she’s still within the really “dangerous” zone for a CF kid since she barely has any body fat and no reserves to fall back on if she would get sick. Ideally, she should be at the 50th percentile or higher so she has some wiggle room when she does get sick, so we need to do what we can to get her weight up, especially since there are direct correlations to better lung health when CF patients have higher BMIs.

Judith’s GI wanted to try the medicinal route before we move to discussing more “invasive” methods (like g-tube placement). We filled the prescription for periactin, gave it a try, and ended up having to pull her off of it for a week because her behavior was declining. The last time she behaved like this was when she was on prednisone during exacerbations last year. Stopping the periactin for a week gave her system time to reset itself back to it’s baseline, and her behavior improved.

Fast forward to a week later, when it was re-introduction day. I gave her an evening dose per her GI’s instructions, and about a half hour later it was pure hell in my house. Naturally all of this happened on a night when John had meetings at church, and I was flying solo through the massive meltdowns. She had 3 big meltdowns in the span of an hour and a half, 1 of which lasted for 20-25 minutes and consisted of full out kicking, shrieking at the top of her lungs, and throwing things at me. The other 2 weren’t quite as long or as violent, but were still pretty intense. Judith decided to go to bed a few minutes before 7p (a little over an hour before her normal bedtime), and was zonked for a solid 12.5 hour stretch. If I was able to handle alcohol, I would’ve had a nice, stiff drink after dealing with the demonic behaviors that were triggered from the periactin. Seriously, I was thisclose to calling our pastor or even a priest to see if they performed exorcisms, because these reactions are so not typical of Judith!

I had to send an immediate message to her GI doctor, letting them know that we can’t have Judith on this medicine, especially with her going back to school next week, and if she would be on it long-term, sending her to kindergarten with these massive mood swings and outbursts of anger. After talking to some other CF moms whose kids took periactin, this isn’t a super common occurrence, but it has happened for others; the mood swings, anger, and other changes were too intense and too much, so they pulled their kids off the med as well. I did notice that when a drug has the potential for a negative behavioral effect, Judith will react, and it can be extra intense because of her autism.

Thank God it was only 1 dose, and it was able to work through her system so we didn’t have a lot of lingering effects the rest of the week! Her GI doc will be getting back to us sometime within the next week to discuss other options, but after discussing this at length with John, we’re both ready to wave the white flag and push for g-tube placement. Neither one of us really wants to put Judith through this, but we feel like we’re out of options and don’t have much of a choice anymore. There are a lot of positives we can get from her having the tube, and we’re ready to do whatever it takes to get her weight up into a healthy range, ideally to a point where it will help her with her overall lung health.

Easter

This is one holiday that is always insanely chaotic for us. That happens, though, when you have a minister or a church musician in the family! John had a bunch of services to play for, so he wasn’t home until after bedtime on Maundy Thursday and Good Friday. We don’t have an Easter Vigil service (bummer, because I really love that service!), so at least he had Saturday night to relax and get ready for the Sunday morning marathon.

I have to admit that things went way better than I anticipated. I was unsure about the day, because we knew we had to keep Judith in the sacristy during the first service since we didn’t have anyone to watch her and I was busy playing with the trombone quartet. She was surprisingly good, and really didn’t create a ruckus. Thank God for the iPad, because that was a big source of entertainment that kept her calm! She was also super good during the second service (which she sat in the congregation for, with our pastor’s kids and his wife), which was a huge relief. I have Lego to thank for that!

Everyone was basically wiped out for the rest of the day, and early bedtimes happened for all of us. We watched the Peanuts movie, and just relaxed. No fancy dinner, because we decided to save it for this coming Saturday when my in-laws come for a visit. No egg hunt at home, either, because no one had the energy for it. We’ll do a hunt on Saturday so my in-laws can see the entertainment, and it’s not like Judith didn’t get to do any hunts closer to Easter; she went to my mom’s church last Saturday morning to participate in their egg hunt, and she went to one of the community hunts in our town that afternoon.

Overall, it was a really good day, and I’m so pleased at how well Judith held herself together through all of it!

Fine Motor

Tuesday was Judith’s last day of school for about 3 weeks (a lengthy break which annoys me from the parenting side of the table, because it throws her routine off… a lot), and her OT had her doing some stuff that she hadn’t done before.

This week, they were working on more pre-writing skills, and Judith actually traced her name in capital letters! It’s an exciting moment, because she really struggles with stamina, and handwriting is a major challenge. I’ve been working with her at home, and it’s only led to frustration on both of our parts. She’s really showing an interest in it right now, though, and since I know her OT is starting to really work with her on it, I feel like we can get the ball rolling and practice at home more frequently. Hopefully without as much frustration as before.

Handwriting is the biggest holdup we’re going to have going into kindergarten. I have no idea how she’s going to survive the first part of the year if she doesn’t start writing soon; the curricula these days is intense, and while she’s at least average or above in other areas, writing is seriously lagging. We’ll have to wait and see what the school district comes up with when they do their evaluation, and I’m hoping that she’ll be able to continue with OT so she can get some one-on-one attention toward developing the necessary skills to successfully print.

Medical Equipment

As a kid, I got excited over toys and video games. As an adult, I get excited over the most mundane, ridiculous stuff.

Ok, I still get excited over video games, and that will never change.

Today’s excitement: my order of 10 brand spankin’ new Pari LC Sprint nebulizer cups arrived in the mail!

Yes, I got excited over nebulizer cups.

There was a bit of a facepalm moment as well, because my Brezza sterilizer was literally on the final minutes of the cycle I started earlier… with all of the old neb cups inside. To be fair, I didn’t know that the new cups would be arriving today, since I wasn’t expecting them for a few more days, but we all know how stuff like that tends to go; things will arrive when you least expect them, especially if you pick the “economy” shipping options ha ha!

So I emptied the sterilizer, re-loaded it with half of the dozen new neb cups I have on hand, and sterilized those so they’re ready to go tomorrow. I also realized that I’m now overloaded with nebulizer tubing (the part that connects to the compressor and the neb cup), since each kit came with a new tube. Sure, I’ll use all of them eventually, but for now it’s making storage a bit interesting.

Needless to say, I don’t think Judith is quite as excited about this as I am ha ha.