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Thursday, October 7, 2010

Growing up

Other CF mom’s said things (CF-wise) would get easier as Ben gets older and I can see that.

Ben can now take his vitamins (CF source) straight from the dropper versus me putting them in his milk. I no longer have to convince him to drink every last drop from his sippy cup to ensure he gets them all in.

He is starting to take his enzymes whole in a Starbucks straw. Starbucks straws are nice and big (McDonald’s is another great one!) and I can pop one it and he’ll suck it right up. However, it’s hard to get him to take 6 full strength sips of his drink. Yesterday he successfully took two enzymes at once but I am treading carefully. I don’t want to push him so we taking things slow.

He takes his Xopenex from his spacer like a pro. He hated it at first but now takes it easily. He takes a deep breathe when he senses the medicine. He even tries to push the inhaler down himself. However, he hasn’t quite mastered it!

We have never had a problem with Ben doing his vest. He even went up a vest size and received a brand spanking new jacket. Of course, we try to make it as fun as possible for him. We are always looking out for DVD’s or games we’d think he’d like. We want to make his treatment time as easy as possible. Sidenote: RespirTech now makes plugs to go into the tubes on the vest so it’s washable. If you have the RespirTech vest, call and request that they send you some!

The only thing he’s been having trouble with is his nebs. I’m not sure if it’s just doing a neb in general or inhaling the Hypertonic Saline. I’ve tried it myself and it makes your throat and nose itch. It tastes awful and I don’t blame him for hating it. Lately, I’ve had to sit next to him and hold the neb over his face. He often fights it with his whole body but we’ve tried to use positive reinforcement with him. I’ll sit with him and whisper in his ear how much I love him, how he’s my hero for all he goes through, how proud I am of him and how well he’s doing. Ryan and I make a huge deal when he’s done, giving him high fives and hugs. I’m going to try and give the HTS another couple weeks and if we’re still having problems, will talk to our clinic about the possibility of switching inhaled meds. 

Before we know it, Ben will be putting his vest on by himself!


I have not started packing but am going through Ben’s clothes and toys, packing up his old clothes and putting away the baby toys. Ben is so lucky to be surrounded by so many people that love, adore and spoil him. The five, filled-to-the-brim, plastic storage bins prove it!


  1. Ohh...good to know about the plugs for the RespirTech vest. I'll def request some of those. Thanks for the tip!

  2. The only advice I can give with the neb problem is to persevere. Sophie was horrendous having her colomycin but now she loves it. Her DNAse is another story but she will at least sit and have it now without too much protest.

    It's so hard but worth it in the long run. Good luck xx


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