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!
Showing posts with label summer. Show all posts
Showing posts with label summer. Show all posts
Saturday, June 13, 2015
Wednesday, August 6, 2014
Miscellaneous Musings
I kept forgetting to update the blog, because things have been rather busy around here the past few weeks.
Trying to get things regulated for Judith has been... interesting. I know why we have to keep her on the high doses of miralax, and with her bowel as stretched out as it is, we need to make sure she's taking all of it to keep things moving so we don't end up inpatient again anytime soon. However, I also knew that it was going to create some nightmare diaper change situations based on her past reactions to 1+ caps of miralax, and I was spot on. The latest clean out has put a total halt on potty training, even for pee. I want to try the training underwear to see if that will help her realize when she's wet, but with the poop situation I need something that's going to contain that mess. I don't even trust to put her in a pull up because they're not absorbent enough. The good news is we were able to cut her daily amount back to 1 cap a day instead of alternating between 1.5-2 caps a day, so I'm hoping this will help. I'm also feeling guilty because we're going to run another fecal elastice test to get her pancreatic function numbers since that hasn't been done for more than 2 years, and I haven't collected the specimen yet. They want it a certain consistency (gross, I know), and I'm honestly not even sure how I would've collected something in the past few weeks. The good news is that Judith's 2 week follow up x-ray looked good: she's not backed up, and the loops that were really stretched out are showing signs that they're starting to move back to a normal state.
Still no action or news on our house. The market in our area really slowed down in July, which is apparently typical, so we kind of hit at a bad time. Things are showing signs of picking up, and we're getting ready to tweak the price to freshen things up, so I really hope this will help get us an offer soon. John has a little more patience with this than I do right now, which is funny because he's usually the impatient one. I'm starting to get exhausted looking at properties and trying to find one that both John and I like and that will work for our family. We did find 2 houses that we really liked, but 1 already sold and I have a feeling the other will sell before we get a chance to submit an offer on it.
We had some gorgeous weather last week, and I really want that back! For July standards, it was way abnormal: low temperatures and very low humidity. It felt more like fall than the middle of summer, and considering this happened at the end of the month it completely threw me off, making me think that September was finally here. Talk about disappointment when I realized that we still have to get through August! Knock on wood, the entire summer hasn't been crazy hot, and I hope it stays that way. We've certainly had some hot days, and the humidity levels have been high, but compared to last year, this year has been pretty awesome. I like not having to run the air conditioners and saving some money on electricity!
Trying to get things regulated for Judith has been... interesting. I know why we have to keep her on the high doses of miralax, and with her bowel as stretched out as it is, we need to make sure she's taking all of it to keep things moving so we don't end up inpatient again anytime soon. However, I also knew that it was going to create some nightmare diaper change situations based on her past reactions to 1+ caps of miralax, and I was spot on. The latest clean out has put a total halt on potty training, even for pee. I want to try the training underwear to see if that will help her realize when she's wet, but with the poop situation I need something that's going to contain that mess. I don't even trust to put her in a pull up because they're not absorbent enough. The good news is we were able to cut her daily amount back to 1 cap a day instead of alternating between 1.5-2 caps a day, so I'm hoping this will help. I'm also feeling guilty because we're going to run another fecal elastice test to get her pancreatic function numbers since that hasn't been done for more than 2 years, and I haven't collected the specimen yet. They want it a certain consistency (gross, I know), and I'm honestly not even sure how I would've collected something in the past few weeks. The good news is that Judith's 2 week follow up x-ray looked good: she's not backed up, and the loops that were really stretched out are showing signs that they're starting to move back to a normal state.
Still no action or news on our house. The market in our area really slowed down in July, which is apparently typical, so we kind of hit at a bad time. Things are showing signs of picking up, and we're getting ready to tweak the price to freshen things up, so I really hope this will help get us an offer soon. John has a little more patience with this than I do right now, which is funny because he's usually the impatient one. I'm starting to get exhausted looking at properties and trying to find one that both John and I like and that will work for our family. We did find 2 houses that we really liked, but 1 already sold and I have a feeling the other will sell before we get a chance to submit an offer on it.
We had some gorgeous weather last week, and I really want that back! For July standards, it was way abnormal: low temperatures and very low humidity. It felt more like fall than the middle of summer, and considering this happened at the end of the month it completely threw me off, making me think that September was finally here. Talk about disappointment when I realized that we still have to get through August! Knock on wood, the entire summer hasn't been crazy hot, and I hope it stays that way. We've certainly had some hot days, and the humidity levels have been high, but compared to last year, this year has been pretty awesome. I like not having to run the air conditioners and saving some money on electricity!
Tuesday, August 21, 2012
Fun at the Park
Judith & I met up with my friend, Amy, and her 3 kids this morning at a local park. The location was gorgeous, and everyone had a blast! It was great to have some in-person adult interactions, too!
The park has a covered bridge and some historic buildings (the buildings were closed, though, so we didn't get to see what they look like inside). There's also a new peace garden with a bunch of different plants that the kids could explore. I didn't get a picture of it (and I regret it now), but we saw a pretty caterpillar that will turn into a monarch butterfly, lots of bumble bees that were busy pollinating, and even some mosquito larvae in the stagnant water of the bird bath. Naturally, Judith saw water and wanted to play in it, and I had a brief moment of panic quickly pushing her away from the gross West Nile virus breeding ground. I have to admit that it was kind of neat to see the larvae in the water, as I never saw that before. Anyway, the garden also had a small corner for vegetables, and they had some nice tomato plants and corn stalks.
We couldn't have asked for a better August day, either. The weather was gorgeous, and the temperatures were nice - warm, but not overly hot. I am so grateful that it's finally cooling down, and we can start doing stuff like this with Judith again!
The park has a covered bridge and some historic buildings (the buildings were closed, though, so we didn't get to see what they look like inside). There's also a new peace garden with a bunch of different plants that the kids could explore. I didn't get a picture of it (and I regret it now), but we saw a pretty caterpillar that will turn into a monarch butterfly, lots of bumble bees that were busy pollinating, and even some mosquito larvae in the stagnant water of the bird bath. Naturally, Judith saw water and wanted to play in it, and I had a brief moment of panic quickly pushing her away from the gross West Nile virus breeding ground. I have to admit that it was kind of neat to see the larvae in the water, as I never saw that before. Anyway, the garden also had a small corner for vegetables, and they had some nice tomato plants and corn stalks.
We couldn't have asked for a better August day, either. The weather was gorgeous, and the temperatures were nice - warm, but not overly hot. I am so grateful that it's finally cooling down, and we can start doing stuff like this with Judith again!
She's unimpressed.
Swings were a hit last year. This year, not so much.
Judith loves dogs, and was infatuated with Amy's Yorkie!
Cheese!
Hugs for the pup!
Friday, August 3, 2012
First Adventure to the Hands-on-House
Originally, we were planning to take a big family day trip to Knoebel's. John's family was going to meet up with us and my parents, and we were going to spend the day taking Judith on some rides for the first time (last year we only took her on the train since she was so little). Thanks to the ridiculously hot and humid summer, our plans did not unfold - since it was so humid today, and the air quality levels were at an orange, we opted for me to stay behind with Judith while John met his parents, brother, and our niece and nephews to have fun on the rides.
Instead of hanging around the house, though, I told my parents that I'd like to bring Judith and the dogs to their place, and thought that maybe we could take her to the Hands-on-House for the first time. I've been holding off on taking her, since I knew she wasn't really ready to handle it and she was still putting everything in her mouth, but I thought that today would be a perfect opportunity to give it a shot since it was an activity we could do inside in the a/c (and she's not putting as much in her mouth right now, so that was an added bonus!).
Hands-on-House is a local children's museum that has many different activities for kids to enjoy. It originally started in an old house, and I went there many times when I was a kid. Since then, the museum moved across the street and is now adjacent to Landis Valley, and is on 1 level. The activities are different (the grocery store is still the same, just updated to mirror what a modern grocery store looks like instead of the '80s version ha ha), but no less entertaining and educational.
I am so glad that my mom and I took Judith today! She had an absolute blast, even though she's still a little young to do everything, but watching her explore the different areas was awesome!
Instead of hanging around the house, though, I told my parents that I'd like to bring Judith and the dogs to their place, and thought that maybe we could take her to the Hands-on-House for the first time. I've been holding off on taking her, since I knew she wasn't really ready to handle it and she was still putting everything in her mouth, but I thought that today would be a perfect opportunity to give it a shot since it was an activity we could do inside in the a/c (and she's not putting as much in her mouth right now, so that was an added bonus!).
Hands-on-House is a local children's museum that has many different activities for kids to enjoy. It originally started in an old house, and I went there many times when I was a kid. Since then, the museum moved across the street and is now adjacent to Landis Valley, and is on 1 level. The activities are different (the grocery store is still the same, just updated to mirror what a modern grocery store looks like instead of the '80s version ha ha), but no less entertaining and educational.
I am so glad that my mom and I took Judith today! She had an absolute blast, even though she's still a little young to do everything, but watching her explore the different areas was awesome!
Checking out the color changing board
Sailboats!
Pinwheels!
Moving the eggs into the refrigeration unit, then waiting for them to pop back out
It's a cow butt!
Driving the New Holland tractor
Picking corn
Petting the pig
Selecting some dog food while holding a mushroom top in the grocery store
Sorting mail - is she going to follow in her great Grandpa's footsteps and be a letter carrier?
Yo ho ho!
Quality control
Germ blaster!
Fishing with Grandma
Tuesday, July 10, 2012
Miscellaneous Musings
We made it through the worst of the heat! The end of last week was absolutely insane. We were near, at, or above 100 most days, with the heat index soaring higher. I knew it was blistering hot when the dogs refused to go outside to do their business, and when they did it was a very quick trip (except for the 1 day when Buster thought it would be awesome to lay in the grass sunning himself - weirdo).
I can't believe how quickly Judith's taking off with so many things. Her little personality is really developing, and she's having a language explosion! Her ST and I figured she has about 10-15 consistent words now, 2 of the newest being "Bickey" (Mickey) and "nishe" (nice). Her babbling has gone to a new level, and it sounds like she's trying to say words instead of just stringing sounds together. A friend recently said that toddlers sound like they're talking "Simlish" - the language from the popular life simulation game The Sims - and I agree with that assessment!
Judith is up to lots of shenanigans, and I can't help but laugh at some of them! This morning, during her CPT, she sounded like she was giving Buster orders, all while pointing her finger at them (she sees me do this when I have to discipline the dogs, so it's no wonder she picked it up - oops!). I have no idea what she was saying to him, but it must've been serious! One of her other favorite activities is to play the piano. She walks up to it, plays an original composition, turns around and waits for us to clap, claps with us, wipes her hands off, then spreads her arms out at her side and declares "All done!" It is so hilariously cute, and I'm desperately trying to get it on video! The little stinker won't do it as soon as she sees the iPod come out, so I have to use some serious stealth if I want to capture this moment.
On the CF front, we've had some interesting moments. I don't get why Judith's bowel habits change so drastically in the few weeks before a clinic visit, and all it does it make me worry about the "what ifs." She has been having a lot of problems with some constipation lately, so we're currently embarked on an adventure with Miralax. Dr. G. and the nutritionist said (over the phone - I called because things have been concerning, and I'm glad I did this) that she's probably having some motility issues caused by the disease, and that she's going to be dealing with this for the rest of her life. I feel bad for her, but it seems like the Miralax is working - Dr. G.'s goal is to get her cleaned out as much as possible before we see him again, then we'll regroup and decide where to go from there. The Miralax has led to some exciting (/sarcasm) diapers lately, but I'd almost rather deal with that over the alternative.
I can't believe how quickly Judith's taking off with so many things. Her little personality is really developing, and she's having a language explosion! Her ST and I figured she has about 10-15 consistent words now, 2 of the newest being "Bickey" (Mickey) and "nishe" (nice). Her babbling has gone to a new level, and it sounds like she's trying to say words instead of just stringing sounds together. A friend recently said that toddlers sound like they're talking "Simlish" - the language from the popular life simulation game The Sims - and I agree with that assessment!
Judith is up to lots of shenanigans, and I can't help but laugh at some of them! This morning, during her CPT, she sounded like she was giving Buster orders, all while pointing her finger at them (she sees me do this when I have to discipline the dogs, so it's no wonder she picked it up - oops!). I have no idea what she was saying to him, but it must've been serious! One of her other favorite activities is to play the piano. She walks up to it, plays an original composition, turns around and waits for us to clap, claps with us, wipes her hands off, then spreads her arms out at her side and declares "All done!" It is so hilariously cute, and I'm desperately trying to get it on video! The little stinker won't do it as soon as she sees the iPod come out, so I have to use some serious stealth if I want to capture this moment.
On the CF front, we've had some interesting moments. I don't get why Judith's bowel habits change so drastically in the few weeks before a clinic visit, and all it does it make me worry about the "what ifs." She has been having a lot of problems with some constipation lately, so we're currently embarked on an adventure with Miralax. Dr. G. and the nutritionist said (over the phone - I called because things have been concerning, and I'm glad I did this) that she's probably having some motility issues caused by the disease, and that she's going to be dealing with this for the rest of her life. I feel bad for her, but it seems like the Miralax is working - Dr. G.'s goal is to get her cleaned out as much as possible before we see him again, then we'll regroup and decide where to go from there. The Miralax has led to some exciting (/sarcasm) diapers lately, but I'd almost rather deal with that over the alternative.
Wednesday, June 20, 2012
It's Like A Furnace Outside
This is seriously the worst part of Pennsylvania summers. Granted it's nothing compared to what many people deal with in the southern states, but when it gets this hot and humid here, it's bad. Humidity and I don't get along, period. Apparently Judith is not a fan either.
Because the air quality is crappy as a result of the very high temps and the humidity, we have to stay inside in the a/c. You know when they issue the alerts and say it's "unhealthy for the sensitive?" Well, Judith qualifies as one of the sensitive because of the CF, and her docs want her safely ensconced in an air conditioned abode. Last year, the temperatures were much higher for much longer, but it wasn't as bad staying in because Judith wasn't nearly as mobile as she is now. This is only supposed to last 2-3 days, but it might be enough to drive me crazy!
I've also been implementing our hot weather backup plan that I got from our nutritionist, and have been offering gatorade with some extra salt added in so we're sure Judith's replacing what she's losing. I keep hoping that Judith will take a liking to the gatorade, but so far no luck. Maybe that will change as she gets used to it (cross your fingers!).
A friend of mine who is a fellow preemie mama described it best: thanks to this heat and humidity, it's like we're stuck under lockdown all over again. Blah.
Because the air quality is crappy as a result of the very high temps and the humidity, we have to stay inside in the a/c. You know when they issue the alerts and say it's "unhealthy for the sensitive?" Well, Judith qualifies as one of the sensitive because of the CF, and her docs want her safely ensconced in an air conditioned abode. Last year, the temperatures were much higher for much longer, but it wasn't as bad staying in because Judith wasn't nearly as mobile as she is now. This is only supposed to last 2-3 days, but it might be enough to drive me crazy!
I've also been implementing our hot weather backup plan that I got from our nutritionist, and have been offering gatorade with some extra salt added in so we're sure Judith's replacing what she's losing. I keep hoping that Judith will take a liking to the gatorade, but so far no luck. Maybe that will change as she gets used to it (cross your fingers!).
A friend of mine who is a fellow preemie mama described it best: thanks to this heat and humidity, it's like we're stuck under lockdown all over again. Blah.
Wednesday, May 23, 2012
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.
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.
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