Search results

I definitely agree with TreasureGoddess - I would be afraid your daughter would be perceived as the "sick kid." In kindergarten it's not a big deal, but as they get a little older it will be perceived as such. Last year when DS was in 3rd grade other classmates noticed that he had to go to the...

All this advice is truly a blessing. Thank you! I am reading the Parenting Children with Chronic Health Conditions: Love & Logics book and it's very inspiring and informative!

Thanks everyone! Today is injection day so I need to keep all this advice in my head!!

Of course the first thing that pops out of my mouth is well, you are normal to me. Well, that didn't help at all! He said Mom, I am not normal! Then I thought I should say well, God makes us all different. But I don't want him to be mad at God! He is very compliant with all his meds but his...

I use the Avent one as well. It seems like I read somewhere that the Germ Guardian doesn't sanitize as well as the Avent or Nuk because it does not get hot enough. The Avent definitely does since you have to wait a few minutes after the cycle is complete to unload the cups because they are...

My son drinks fruit smoothies with flaxseed oil (13g of fat per tablespoon) - a healthy way to gain weight! You could also add a tablespoon of peanut butter too! He also likes those Pedisure vanilla drinks. The scandishakes would probably be the way to go though because they are loaded in...

My son's hands are always kind of sweaty. He has sweaty feet in the summer but they can get pretty cold in the winter! He's normally lethargic only when he's sick.

The treatments have been taking longer so I definitely need to get with the program again. Thanks everyone!

How does everyone keep up with how old a certain nebulizer cup is? I used to mark my son's cups with a sharpie but the ink fades, and I must admit I have been a little lazy about trying to keep up with the dates! He nebs Xopenex, Saline, Pulmozyme and Tobi when needed so he has a lot of cups...

We never knew the teacher until a few days before Open House so I always called the nurse ahead of time to schedule a meeting. I always met with the teacher a couple of days before school started except last year. Last year the teacher had had a student with CF so she really did have the...

My son has had a train skin it for a couple of years and it still looks great.

Wow, I think I would have lost it with that nurse on a good day, much less with no sleep and stress from having a sick child. Hopefully you have a different nurse by now (ours always worked 12 hr shifts), and can request a different one. I hope your son gets better soon, and that he gets a...

We used to have the Germ Guardian but I read somewhere that it doesn't sterilize them, so I switched to the Avent baby bottle cleaner which is supposed to sterilize them. DS normally uses 5 nebs/day which I wash with soapy water first, let air dry (unless it's the pm ones which go straight into...

We just started the co-pay assistance program as well and they cover up to $50/month. We used to pay $30/month so I am guessing they will pay the whole thing.

We just started the co-pay assistance program as well and they cover up to $50/month. We used to pay $30/month so I am guessing they will pay the whole thing.

My 9 year old son has been taking pulmozyme once/day since he was diagnosed at age 5. The CF Center where we live (go twice/yr) said he tells his patients that they can go off of it in the summer for a break. We also go to a CF Center in Chapel Hill twice a year, and they have not mentioned...

My 9 year old son has been taking pulmozyme once/day since he was diagnosed at age 5. The CF Center where we live (go twice/yr) said he tells his patients that they can go off of it in the summer for a break. We also go to a CF Center in Chapel Hill twice a year, and they have not mentioned...

Is it uplifting? Or will I be really sad at the end?

Is it uplifting? Or will I be really sad at the end?

The last time DS was in the hospital they would not let us use our own meds. Sometimes the nurses would be really busy during meal times so I would give DS enzymes out of our stash. Some nurses were fine with that and some were not. Our hospitals here have Child Life Specialists who try to...