Our old CF Commercial that plays on MCTV. Still working on this years.

Wednesday, March 31, 2010

Questions for Clinic Day! White Palms????

I can't sleep...been up since about 3:30am;( I guess I'm just nervous about clinic day. Am I the only CF parent this happens to? I don't think I have much to worry about, but you just never know what could be lurking in his lungs. I pray I never have to hear the words Psuedomonos. It's one of the worst bacterias, and hardest to get rid of.

One thing I am nervous about is his weight. I don't think he has gained much since his last visit 3 months ago. He still doesn't like to eat or try new foods. I have to give him credit though...he WILL drink his 600 calorie scandishakes!! Thank God!! But he won't even finish a hot dog anymore, and that's like the only thing he'll eat!! Please pray he doesn't fall below the 50th percentile. It's only happened once before, but we have come really close lots of times. I think this time it's going to be really close again.

Today is our last visit with Dr. K. He was the one who broke the news to us about Lil' Chris' diagnosis almost 3 years ago. He will truly be missed;( I will try to remember to get a pic of him and Lil' Chris for his baby book:)

I have a few questions for Dr. K today;)
  1. Does Lil' Chris need a bigger Vest? Can he get the new BLUE one that I hear is more comfy??? (Thanks Heather for telling me about the new blue and pink Vests:)
  2. Can he take pill form antibiotics instead of liquid now since he swallows his enzymes with liquid??? (Thanks Adain's mommy for the advice on this one;)
  3. He has lil' bumps on his arm...is this CF related??
  4. The palm of his hands are turning white, is this CF related?? I heard Drysol helps, is it ok for a toddler to use?? (Thanks CysticLife friends;)

I've ask about his hands on CysticLife and got a great response, and it DOES seem to be CF related. Some adult CFers told me that Drysol helps. They say that it can be painful, so Drysol helps a lot!! Lil' Chris never says anything about them hurting, but I don't want them to get to that point. I'd like to get rid of it now if we can. I first started to notice it in the beginning of March when he was taking a bath one day. His hands were really pruny (but that's nothing new since most CFers get pruny way quicker than others), but when I looked closer, they were peeling on his palms pretty bad!! Hours after his shower, some skin was still coming off, but the next day it wasn't peeling that much anymore, but where it did peel...there were white marks or blotches. Now, almost a month later, his hands haven't peeled like that, but the creases of his palms are all white. I tried taking a pic, but you couldn't see it and he wouldn't let me keep trying. I think he is starting to know that something is wrong, b/c I keep asking to look at his hands all the time now. They aren't changing though. How do I get rid of these white lines??? Hopefully the doc will have an answer for us today. I'll let you know.

The last couple of days I have been trying to practice with Lil' Chris to wear his hospital mask so that he will wear it in the hallways at the clinic...we'll see how it goes today;) I have a pic of him wearing it, but I can't add it to this post right now, b/c I am uploading a TON of pics right now for another post;) lol I'll add it to that post;)

Pray for a good, quick visit,


PS. Tonight we have a Great Strides meeting. I'll update you later on how our walk is coming together:) Make sure you register to be a walker...it's coming up in just 4 weeks;)


Aunt D. said...

Hey Girl! I'll be praying for you guys today & that your clinic visit goes well! Lil C is at such a tough age for eating habits. R is still picky & changes his favorite foods weekly - drives me nuts! =) Hang in there!

Alicia said...

Clinic days always make me nervous too, and the big thing with Samantha is we can't get past that 40th percentile weight. So frustrating!!!

You have some wonderful questions ready! I'm not good about checking blogs anymore (how did I ever have time?), so please link your answers to Facebook-that's a great idea! Samantha also started a capsule version of AquaADEKS (it's a serious horse pill, but so much easier than liquid). Oh, I just read that Chris is on Vitamax-I think they may even have a chewable version. Doesn't taste great, but again easier than liquid (if he'll chew it!)

Good luck! Can't wait to hear!

65 Roses for Marcia said...

Hope your clinic visit goes well! I'm curious about the hand thing and what the dr. says.

Josh said...

Do your best to take clinic visits in stride. Challenge your doctor and listen to them. It's an odd mix, but it will work out just fine.

You can call the vest company about sizing as well. They can tell based on the chest measurement whether or not you need a new one.

Peaceful Things.