Friday, October 4, 2013

The Perils of Preschool (when your child has CF)

Hi there! First off, I wanted to make sure you know I have a giveaway going on! You can win either a spot in my kit OR a brand new Noel Mignon Evening Stroll kit, so make sure you click here to find out all the deets.  Did I just say deets?

Well this isn't scrappy related or really related to anything in particular- maybe it's just a rant.  I just find myself (and my hubby) going in and out of frustration with this preschool situation.  We wanted Charlie to attend preschool in order to get him around other kids, plus we knew that shielding him from every little germ in the world, by having a nanny, would eventually catch up with us so why not expose him now, when his Cystic Fibrosis is being well managed.

These photos have nothing to do with preschool, but they are freaking adorable :)

Of course this isn't something we can just send him off to.  I had to meet with all of his preschool teachers and explain that at snack time Charlie would need to be given enzymes, he would need extra hand sanitizer precautions, and need to drink as much as he needs because he gets dehydrated easily.  These women were all super nice and accommodating.  We decided we would send a special high fat snack into preschool with him and we would also pre portion his enzymes so all they'd need to do is dump it on some applesauce we provide, mix it up, and give him his meds.  Charlie normally doesn't eat a snack midmorning, he takes such high calorie meals 3 times per day that it's almost impossible to get him to eat a snack.  I don't blame the kid, he eats 500 calories for breakfast, would you still be hungry 3 hours later? Probably not.  So we knew this but we didn't want him to sit at the snack table all by himself while all the other kids were eating so we decided to test out a small yet high calorie snack to see how he did.

SO there's the background, but we keep running into some annoying situations.

1. Charlie has been "under the weather" since day one.  Not full blown sick really, but coughing more than usual, a bit more congested, and taking longer naps.  This goes the same for Robb and myself, albeit without the naps, and of course we don't have CF so who cares?

2. The teachers never realized they need to FEED Charlie his enzymes, and acted annoyed that our son couldn't feed it to himself.  Robb and I thought this was ridiculous, but I don't know what the parents of 'normal' children do for medications.  The enzymes are tiny little beads that you mix in applesauce, hundreds of them I would guess.  Mixing up the enzymes and then handing it to Charlie and expecting him to first, eat all of it, and second, scrape along the sides to get any stray enzymes, (all without supervision) seems beyond ridiculous to me.  I don't know how many parents out there would take a very important medication and hand it to a 3 year old, walk away, and just assume that they took it themselves.  I asked one of my friends who is a mom and she said that "yes, if she gave her child a syringe of medicine she would just take it".  To this I call bullshit.  If you had a medication as important as this one is you would NOT let your child administer it to themselves and walk away.  Wouldn't it be great if he learned to dump out his medicine while our backs were turned and then ended up with an intestinal blockage or something?  I was so shocked when the teacher acted annoyed that they had to spoon feed him his medicine, it seems so damn obvious to me.  Not to mention it only takes approximately 30 seconds to do it, 3 small spoonfuls and he almost always eats it willingly.

3. Charlie is always dying of thirst whenever we pick him up.  Constantly asking for gatorade and water as soon as he sees me.  I need to speak with the teachers and remind them he needs drinks available at all times.  Maybe even provide a sippy cup.

4. We've gotten a few 'behavior' phone calls already.  I was expecting this, personally.  Charlie has taken a handful of independent classes but for the most part it's just him and his nanny, grandparents, or mom and dad- so he gets to do whatever he wants most of the time.  He knows he needs to sit for treatments, dinner, and bedtime stories but aside from that he can just play and play.  So he's having a hard time listening to the teachers and sitting for circle time, etc.  That being said, we've been working with him a LOT over the past few weeks and it has gotten much better!

However, Charlie LOVES it!  He has been asking to go to Preschool everyday (it's only 2.5hours Tuesdays and Thursdays), and I can even get some details out of him about his day now.  So of course all those annoyances are totally worth it when I see how much fun he has there :)  Not to mention that the 2.5hours I now have free on Tuesdays has been pretty nice too hehe

Needless to say I will have a lot of issues to discuss at Charlie's CF Clinic appointment next week!  Any other momma's out there have any luck with a CF kid starting preschool?  Share your wisdom please! Am I totally "off" about the enzyme thing?


  1. Gosh, that is so hard. I have had 3 boys, and the answer is NO, there is no way a 3yo boy is going to understand the importance of getting all his medication into his body, period. I think maybe you and your hubby need to invent a squeezable/pre-enzymed (is that possible?) gogurt type snack for CF kids. Maybe that would be understandable for a child. You know, you have to get all this applesauce in this tube into you every snack period, or you will not feel well. Or if the teachers would be more willing to check for an empty tube than helping him get it all down. It's so hard to trust other people to "get it" when it comes to your kids. And I partially understand that, because there are 20+ other kids to look after, but when your child has a critical illness, you would think that there would be more understanding and diligence taken.

    Hang in there!

  2. For what it's worth, I totally agree with you ... since Charlie has to get all of the enzymes, it is imperative that an adult feed him his applesauce. I don't understand why his teachers don't understand that. I'm glad that Charlie loves school though. I hope that you're able to work out these problems. And don't worry about the "behavior problems" ... he's only 3 and he hasn't been in school that long.

  3. I watch my almost 7 year old take medication. I don't just assume my kiddo takes it. I surely wouldn't let a three year old be in charge of his medication.


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