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

Thursday, April 3, 2008

CF Update

Yea!! Using the syringe for the Prevacid SoluTab is getting easier! After I gave it to him the first time and had a really bad time doing it, I read the directions. I know, I know. When did I turn into a guy? Just kidding ; ) The directions explained how to do it much better than the explanation of the doctors and nurses. It's actually almost exactly what Susanna said in her comment.
I knew there had to be a way for it not to spray all over, that's why I looked to see if there were any directions. And then after I tried it yesterday morning the way the directions said, I saw Susanna's comment. Thank you Susanna for explaining it to me how you do it and for telling me that it only turns into those little beads. Who knows when I would've figured that one out, since I have no patience. The only thing different in the directions, was to only fill the syringe with 4 ml of water. Then after giving it to him, put 2 ml of water back in and give it to him. That way nothing is left behind I guess. Even though I did it this better way, it still seems to get all over his face. Those little beads don't come off so easy either!
I'll get the hang of it eventually. I was glad to hear that your kids liked the taste, Susanna. Puts my mind at ease. We've gone through so many of the bad ones that it is nice to have a good one for a change. Although, I still prefer the capsules b/c they were much easier. You just sprinkle them on the applesauce like the enzymes, no clean up involved. With the syringe, it's hard to clean all the little leftover beads out. I almost need a special little brush that I can stick down in there and clean it out. But where do you find one of those? Any advice?



Anonymous said...

Glad it's going better:-) If you give just little bits at a time you can watch the little beads settle down in the point of the syringe. Eventually you'll get to where there aren't any beads left in the syringe to clean out:-) Also as Lil Chris gets used to taking it (in small amounts at a time) he'll keep it in his mouth instead of letting it run back out. One more thing, if a lot of the little beads get on his clothes, you'll want to make sure you wash it soon. I made the mistake of letting some outfits sit for several days in the laundry basket...:-( those little beads turn into little purple spots that stain. I know, I know most moms keep up with the laundry every single day so it would be no problem (Just kidding:-) At least I hope I'm not the only mom that has trouble keeping up with 5 people sometimes:-)

It's so good to hear about Tricia's tx. I also connected to "Living Life Breathlessly" and read about her tx. At first it made me feel badly because these girls are our age and younger. But then I read on "Breathing Deeply" (and she's our age too) that her life expectancy was only 10! That goes so show the extreme advancement in treatment in the last 20 years. If these girls (ladies) are 15-17 years past their life expectancy and are just now having tx's ... will our children be into their 40's and 50's before they need transplants?? I know that each person responds differently to the disease, but it's an encouraging idea to think of it that way:-)

Have a good day, Susanna
PS I'll come back and write about the CD sometime. I haven't forgotten.

Lil' Chris' Mom said...

You know what? I was thinking the same thing Susanna! It's very encouraging. But I guess we won't know until the time comes.
Thanks for the advice about the purple stains. I'd hate to ruin any clothes my sisters gave me ;)
Luckily, they both had boys within the last 3 years. Gotta love hand me downs ;)

Aunt D. said...

Hey Susanna! Actually, I'm glad to hear that I'm not the only Mom that has trouble keeping up with 5 people too!! The laundry feels endless, doesn't it? =P

Thanks for your always encouraging advice for M! I'm so glad she has someone she can relate to & ask advice from.