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

Wednesday, April 30, 2008

Susanna's Comment

Hey Everyone,
I wanted to post Susanna's comment(hope you don't mind Susanna:),b/c she gave a WAY better explanation to the cross-contamination than I did. She even taught me something ; ) Thanks Susanna! Plus, I don't know about anyone else out there, but I was always curious about 2 siblings having CF. Thanks for explaining Susanna. It kinda put my mind at ease a little bit, if we were to ever have another CF child ;)
Thanks for also telling me about the beaded necklaces. I wondered if they did something like that. I guess I'll find out in a few days if they do that at the walk that we are going to. I definitely will suggest that for the walk we start here in our town next year(I'll explain later).
I will be praying for Janna and your whole family. Just remember, the Lord is always in control. He will see you through this. He will guide you to make the right decisions for your daughter.
Thanks again,
PS. So happy to hear about Janna's clear throat culture! YEA ;) Hopefully Lil' Chris' will be clear too:)

Hi M, I'm only going to be able to make a few 'scattered' comments tonight, but the discussion has been so good that I don't want to drop my end of it:-)
As for Cross-contamination; Timothy would've been nearly 5 and a half now, and I know that even when he was diagnosed at birth, they had already done away with the CF support groups and mixed activities. Here's the big deal (I think:-)... as CF progresses some CFers can develop bacteria that becomes resistant to the antibiotics that we have to treat them with. That's when the lungs really begin to be scarred and the lung function really begins to drop. These bacteria never settle in a non-cf lung because our secretions are able to effectively move anything out that doesn't belong. On the other hand the thick mucus' in the CF lung make it difficult to get rid of those infections. The problem with mingling with other CFers gets really tough when someone may have one of these antibiotic-resistant forms of bacteria and not even know it yet! Overall, they've decided it just the best rule to keep the 3-5 feet apart (or more).
All that said, I have 2 CF babies in the same home!! Janna's culture grew out psudomonas a week or two before Chloe was born! I was afraid that meant Chloe would get it from day 1. But apparently, different people respond somewhat differently even to the same bacteria, because Chloe (nearly 11 months) has not grown out psudomonas a single time!! Thank God. (And she's had cultures every 4-6 weeks) I do my best to keep Janna and Chloe from cross-contaminating each other. They don't use the same spoons, I don't dump their enzymes into the same bowl of baby food, they don't share bottles, or sippy cups, I try to keep Janna out of Chloe's face especially if either has any kind of cough or runny nose... BUT they are sisters. And we are a family that is very verbal and demonstrative in our affection and love. So when mom and dad are hugging and kissing :) ...the kids are too:) Especially if there are ouchy's involved:) We do encourage Janna to hug Chloe from the side or back and to kiss her forehead or hair instead of lips or nose.

One more thing:) About the Great Strides walk ... at the one here they actually gave out colorful beaded necklaces to anyone who was there with CF. That way it was something pretty to wear, let other people know that here was someone that they are actually walking to help, and yet it also let CFers know who to keep those 3-5 feet from:) I really liked being able to know those things:)

Thanks to Daniel's mom for responding to my questions. The doctors have been talking about a G-tube for Janna that would stay in for YEARS to come! Her weight is still a little low compared to Daniel's (him at 34, her at 28; he'll be 3 in July, she'll be 3 in Oct; but she was also 11 lbs 7 oz at 7 months old!). We are still saying that we are going to wait until she is 3 to 3.5 years old to even seriously consider the G-tube again. I believe she's doing so much better than the first 18-22 months of her life...We'll I've gone on and on again:) Please forgive me I'm sorry if it's a little difficult to follow.Good night and God Bless you, Lil' Chris, and all those that love him.
~ Susanna


daniel's mom said...

The weight thing is hard. I know it is important but I get so tired of hearing about it. Where does she fall on the scale? 28 lbs for a 2-1/2 year old girl sounds pretty good, but I know they have the "charts". Boy the necklace idea is great. M - I don't think they did that at the walk you are going to last year. I'll let you know about the one I am doing on the 18th. It seems like such an easy way to i.d., and what kid doesn't like beads! Before I forget M if you decide to organize a walk in our town, my husband and I would love to help. Well Daniel wants me to come do puzzles while he is doing his vest, so I had better go. Have a great day everybody! Daniel's Mom

Lil' Chris' Mom said...

Great! We would love the help! I was hoping you would be on board!
I'll blog more on the subject later.