Tuesday, June 30, 2015

Getting Ready For School

No, you read that title right. Yes, it's the middle of summer, so don't check your calendar thinking time flew by faster than you realized! Judith is starting a special class in exactly 1 week for some other things that are going on, and now we're working to gather everything she's going to need.

When we wrote her IEP, we worked on an individualized health plan that acts kind of like a rider (but kind of functions like a 504 plan, just carrying more weight since it's attached to the IEP), and we have a list of accommodations in there that Judith's teachers will need to follow. Since she's only in preschool, and it's only 1 day a week right now, there aren't a ton of things that need to be covered. Next year, though, as we transition to kindergarten, the accommodations are certainly going to increase and some will need to be changed.

But I digress. For those that know me in real life, you know I tend to be a bit of a pack mule when it comes to going anywhere, particularly with Judith in tow. I've certainly worked on that, and have improved with some of the day-to-day stuff, but for other things, I always tend to lean more toward being over-prepared, just in case. Since this is Judith's first formal schooling experience, I'm understandably a bit nervous and anxious about how the day is going to go, and want to make sure I don't forget something that she's going to need.

About a month ago, I got our team to write a prescription for a new spacer so I could leave the spare in her backpack in case she would need it. Getting an extra inhaler wasn't an issue, because I always keep 2 backups in the house in case of an emergency. Since Judith is still pancreatic sufficient, we don't have to worry about sending enzymes with her, nor do we have to worry about the staff being trained to administer them. They're used to and able to administer rescue inhalers for kids with asthma and other respiratory conditions, but the enzymes could have been a potential issue if we were on them. But the point is moot since we're not. Medication-wise, we're set. All I have to do is label everything, then toss it into her backpack so we're ready to go.

I have a bunch of new water bottles for her to carry with her, and they're all leak proof. I remembered that I'm going to have to send a couple cans of pediasure with her every day, and a spare outfit in case of accidents. I'm planning to get another travel toothbrush holder after seeing a pin on Pinterest showing how you can use it as a travel straw caddy (and I must say it works like a charm!) so Miss Picky can have the "bendy" straws that she likes.

The last thing that I realized I need to send is the Teacher's Guide to CF that the CFF publishes. Her health plan does detail certain aspects, and I know a few things are doubled on both documents, but the odds of Judith's teachers having experience with another child with CF are pretty low. I know how overwhelming it can be when you have a child come into your classroom with a complex medical condition, and all of a sudden you have a huge list of accommodations to remember, so I'm hoping the guide will help by giving them a quick document to look at if they are unsure about something.

Judith is really excited to be starting! For over a year, she's made comments about the school bus, saying how she wants to ride it, and now she's going to get her chance. She has some hard work ahead of her, but I'm hoping that this class will help eliminate some of gaps that she has with same age peers, and she'll be better prepared for kindergarten in the fall of 2016.

Saturday, June 13, 2015

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!