Hot, Hot, Hot!

It's that dreaded time of year again. If you've followed my blog for a while, or if you've known me for a while, you know that summer weather isn't exactly one of my favorite things in the world. Heat and humidity make me cranky! And the older Judith gets, the more obvious it's becoming that she takes after me with that. John didn't mind it up until recently (and he'll still try to tell you otherwise, but he's not fooling anyone because he'll complain a lot in the moment!), but the heat and especially the humidity can take a toll on Judith.

I do think that a lot of this is CF related. Some people with CF are fine with temperature extremes, on both ends of the spectrum, but Judith doesn't do well with either. She'll complain that the cold hurts her lungs, but in the summer she's not as quick to say that it hurts or bothers her. Instead, she shows other signs, like getting very cranky, and not being as active as she normally is.

Yesterday, we were under air quality alerts, or a "code orange," for poor air quality, and Philly and the surrounding suburbs had some level of heat advisory because of the heat index. For anyone, it's so important to stay well hydrated when the weather gets this hot. For a person with CF, it becomes doubly important not only to stay hydrated, but to add salt to their diet to replace what they're losing through sweat.

People with CF need additional salt as it is, but during the summer months, many have to up their intake more to make sure they keep their salt levels in balance. Dehydration can happen rapidly for a person with CF due to the rapid loss of salt.

We've received some strange looks in the past when we've salted Judith's food or even her formula. I'm sure there have been some who have judged us heavily. That's simply a matter of people not knowing that A.) she has CF and B.) they aren't aware of the loss of salt that happens in people with CF. After 4 years of doing this, I've become a pro at ignoring people's judgment, as long as they don't make a snide comment to my face. Anyway, the past few days have been rough, because the heat has really wiped Judith out, and I had to up her salt intake through salty snacks because she's at a point where she won't always drink beverages with salt in them. It's challenging, because she won't always want to eat those salty snacks, and a great go-to beverage, Gatorade, is something she rejects.

We're going to be starting a new adventure in a few weeks, and Judith will be going to a special preschool class 1 day a week. Since this will be the first time she's in a formal schooling setting, I'm starting to worry that she will be too distracted to remember to drink enough in the hot and humid weather. I'm sure her teachers will be on top of it, per her health plan, but there's that mother's worry that is going to stay for a bit. I'm hoping that a new, fun container will entice her to drink more so she stays hydrated!

Salt & Nutrition

I’ve heard other CF parents talk about dirty looks and even snarky comments they get from strangers when they see them salting their young CF child’s food or drink.  We’ve been on the receiving end of some strange looks ourselves, and from an outside perspective it really can look like the parents are starting their child down the path to hypertension rather early.  Trust me, though, we wouldn’t be doing this if it wasn’t necessary.

CF patients shed more salt than people without CF thanks to the malfunctions in the CFTR (which I still don’t completely understand because it’s pretty complicated), and as a result that salt needs to be replaced to keep the system in balance.  Dehydration can also occur faster because of this, which is often why CF patients will down beverages like Gatorade or other electrolyte-replacement drinks.  Sort of like the dosing with enzymes, how much salt each patient needs to replace will vary, and can even vary by day.  For Judith, I tend to give her less salt over the winter because she’s not sweating as much, and will often eat enough salty foods to compensate.  Over the summer, I do add extra salt to her food since she’s sweating more, and I want to make sure that she’s getting enough to replace what she’s losing.

Nutrition for CF patients is also important, because good weight gain and a high BMI are directly related to good lung health and pulmonary function.  Because of the absorption issues that many CF patients face, extra calories are needed to help the patient gain weight and get to or exceed the “optimum” BMI of 50%.  How many calories a CF patient should consume each day is going to vary depending on the individual, but a ballpark figure that I often hear mentioned is about 2,000 calories each day.  Again, that number will vary; some people will not need that many calories, while some might need more than that.


Source: http://www.cff.org/treatments/Therapies/#Eating_Right

It's Beginning to Feel A Lot Like... Summer

Compared to how it feels in other parts of the country, I probably shouldn't complain too much.  But I'm going to anyway.  It's really humid, and it's not going away any time soon.  I was really hoping that the warm but not humid conditions would continue, and we could delay putting the air conditioners in the windows.  That's not going to happen - it's only supposed to get hotter as the weekend approaches, and for Judith's sake and the dogs' sake, the units will be put in tomorrow night and probably operating as well.  Humidity and I don't get along, so it'll feel nice to have a climate controlled house and good sleeping conditions again.

Today has been the worst day so far with the humidity, and I know it's affecting Judith.  After a call to the CF clinic, I received instructions on how to make sure she has enough salt and fluids in her system - she's still getting the additional 1/4 tsp. every day, but we're sweating so much right now that I'm worried even that amount won't help her body catch up to what she's losing.  I have some Gatorade in the house, and we're going to add an extra 1/8 tsp. to the entire bottle (it's not the smallest size, but one of the medium sizes - I'm guessing 32oz?) and trying that with her in addition to the Pediasure.

Since we rescheduled her speech therapy to this morning so she could go visit John at work yesterday afternoon, I decided we would try some Gatorade to get some extra salt into her.  I have 3 flavors: fruit punch, lemonade, and lemon-lime.  I thought, "Well, it's humid and fairly warm, so lemonade would be refreshing."  I opened it, added the salt, and filled a sippy cup for her to try.

She took 1 sip and made the strangest face!  It was rather amusing.  I didn't realize it would be quite that sour, but also thought she would just have to adjust to the flavor since she's used to only drinking Pediasure right now.  She tried it a couple more times with the same results, so I guess she's not a fan of it at this point.  We'll keep trying though, and I'll open one of the other bottles if necessary.

Now That Judith's 1

There are a lot of new and exciting things happening!

First, though, some pictures from Judith's party on Saturday (these are all smash cupcake pics):

Judith's party was good.  She was cranky (a combination of teething, barely napping, and overstimulation), but she did enjoy herself in that way that a 1 year old can.  She got some cute outfits, lots of toys, her own Nativity set, some books, and an Anywhere Chair from Pottery Barn Kids!  The following day (Sunday), she had worship appointments put in at my parents' church in honor of her birthday, and her grandparents, John, & I sponsored the altar flowers at our church - she had 4 beautiful bouquets sitting on the altars, and we got to bring one from our church home.  :)

We're going through some big changes right now.  One of the biggest is she's graduating from formula to Pediasure.  I have 1 can of Neosure left that I just opened this morning, and once that's gone we're done with it!  She needs to be on the Pediasure to keep her calorie consumption up, and thank God that our insurance and her MA will pick up the tab because that stuff's EXPENSIVE (we're talking close to 10 bucks for a 6 pack), and for her it's considered a medical necessity.  I have bad memories of that stuff from when I used to volunteer at S. June Smith center years ago - one of the kids had to drink it, and it smelled so nasty!  It's definitely improved over the years, and now it kind of smells like a McDonald's milkshake.  Anyway, that's going to be her new primary liquid source, and a medical supply company will be delivering it to our door monthly.

I'm still working with her on the sippy cup.  Saturday she took a whole ounce of Pediasure, and I was so excited!  We're making progress, but it's extremely slow progress.  It reminds me a lot of the struggles we went through in the NICU trying to get her to nipple feed, and just like then we'll have to wait for whatever it is to click in her mind before she really takes off with the sippy.

On top of all of these changes, I need to come up with new, possibly creative ways to get Judith's daily salt amount into her.  One thing I'm grateful for is that we don't have to make this transition during the summer months - since it's cooler, she's not going to lose salt as quickly, but we still need to make sure she gets enough to replace what she is losing.

Salt & Calories

One of the quirky things about having a child with CF is the nutritional side, and there are many, many things we'll be learning as Judith gets older.  Right now, I feel weird doing some of the things we need to do, because we would seriously be judged out in public by strangers that have no clue why we're doing it.

Funny/random side note: I have Judith in the Ergo right now, and as I'm typing about nutrition, she's sitting here alternating between licking my shirt, the Ergo strap, and gnawing on said strap.  Either she's telling me she needs more fiber, she's teething, or is orally exploring.  Whatever it is, it's gross.

Back to my original thought.  One thing we need to do is add salt to her formula.  Right now, she gets 1/4 tsp mixed into her pitcher each day.  People with CF shed salt like crazy when they sweat (more than a normal person), and it has to be replaced - this is why when you kiss Judith, especially if she's warm and sweating, she'll taste salty.  Salting down her food or formula helps with this replacement.  It's especially critical for her to get enough salt right now because we're in the hot summer months.  The interesting part is she won't have to worry about hypertension and all of the other things that happen from too much salt - apparently people with CF are immune to this happening because of the amount of salt they lose.  I thought that was interesting.  :)

For some strange reason, I'm a little paranoid about adding salt to Judith's bottles when we're out in public.  I try to remember to add the salt either to the water in the bottle or to the powder in the travel case before leaving the house so I can avoid people seeing me do it.  I don't know - maybe I'm worried about people judging, and maybe it's a defense mechanism against having strangers walk up to me and give me an unsolicited lecture.  I'm hoping that I can get over this paranoia in time, because there will be a day in the near future where we'll be in a restaurant or something and I'm going to have to salt her food or drink for her.

The other thing we need to do is boost her calories in her food.  People with CF need high calorie diets to make sure they're getting all the nutrients their bodies need.  We're keeping her on the NeoSure (22 calorie formula) until we transition her to whole cow's milk.  Our bank account is weeping at this news, because the cost for that stuff is insane, but if it's going to give her what she needs I'll gladly give it to her.

I wish we could give her straight purees, but we have to add some sort of cereal to boost calorie content of those as well.  So I mix rice cereal in with her veggies, and oatmeal in with her fruit.  If you remember, I posted a while ago about the rice cereal being a no-go; well, if it's masked by another food, Judith will eat it with no problems!  And she absolutely loves the oatmeal.  The cereal has a bonus effect: it thickens some of the runnier purees, and Judith likes her purees on the thicker side.

I'm interested to learn how all of this is going to change as Judith gets older. :)