Cool Link About CF and How do I count Calories for Lil' Chris?

Here is a cool link that my good friend Carmen's mom sent me...www.sacfa.org.za


If you are a CF mom or even a CFer, you should check it out. If you click on the "CF Kids" it's pretty cool how they animate and explain CF and enzymes and just everything about CF! You could even watch it with your CF child and they would probably love it just like Lil' Chris did:) It's a lot of fun!


As for an update on Carmen, she is doing well CF wise, but she just got 2 wisdom teeth pulled. OUCH!! She is also doing a CF clinical trial still, which I admire her for:) I pray she continues to do well. I'll keep you updated.


I've been meaning to write Susanna for an update on her 2 girls who have CF, so I will let you know when I find out. Hopefully all is well with them.


To update you on Lil' Chris, he is doing better, his cold is all gone. He still coughs sometimes, but it's not the wet cough anymore so that's GREAT news!! I guess the Augmentin is really kicking in:) He still is not eating as much though and is having some really smelly diapers...if ya know what I mean;-) I keep thinking that maybe we forgot to give him his enzymes one time or something, but we don't think we did! Weird. Maybe it's just the Augmentin finally hitting him..IDK.


So we tried the rest of the supplement drinks that Alma gave us and he still would not drink any of them!!! So frustrating when I know his body needs the extra calories and nutrients!! So what did we do today???? We went food shopping and spent tons of money and time searching for anything with tons of calories for him that we think he might eat! Well, we hope anyways. If not, momma's gonna gain back the 27 lbs she lost!! Nobody wants that, esp me!! ;-)


I'm not really sure if I'm reading the labels right for what's good for CF, I've never really had to look at labels before except to see if it had milk in it or not b/c I'm lactose intolerant. So this is what I look at and if I'm wrong, someone PLEASE let me know! We all know that food is so important for CF!...

1. Cheese crackers with Peanut Butter: Serving Size=1 package(6 crackers), Calories=190 I just noticed now that I am looking at them all, that they all say Calories from Fat. What does this mean? Is this what I should be looking at? Or do I just look at the Calories per serving?? I think this should be something that the CF clinic should teach new CF parents! Luckily I have you all to help me;-) So this one says...Calories from Fat=90.


2. Mini Oreo's: Serving Size=9 cookies, Calories=130, Cal from Fat=50.


3. Betty Crocker Fudge Brownie Mix: Serving Size=1/20 pkg, Cal=Mix is 100 and Prepared is 170. Cal from Fat=Mix is 5 and Prepared is 80. What does Mix mean? I feel so stupid now;-)


4. Chocolate Icing to add extra calories to the fudge brownies above: Serving Size=2 tbsp, Cal=140, Cal from Fat=50.


5. Jell0 Oreo Cookies 'n Cream instant pudding mix: Serving Size=1/4 pkg, Cal=120, Cal from Fat=10.


6. Reese's Peanut Butter Chips(I'm getting desperate here, I don't intend to bake them into anything. I'm just going to see if he'll eat the chips alone for extra calories;) : Serving Size=1 tbsp, Cal=80, Cal from Fat=35.


7. York Peppermint Pattie: Serving Size=1 piece(it's a big one), Cal=140, Cal from Fat=25.
8. Peanut M&M's: Serving Size=1 pack, Cal=250, Cal from Fat=120.
9. Chocolate Instant Pudding Mix: Serving Size=1/4 pkg, Cal=Mix is 110 and with 2% milk reduced fat is 170, Cal from Fat=Mix is zero and with 2% milk reduced fat is 25. Again, not sure. If I use whole milk the Calories will increase right??
10. Heavy Whipping Cream(thanks Alma for the suggestion and where to find it in Wal-Mart;) : Serving Size=1 tbsp, Cal=50, Cal from Fat=50.
    

Hopefully someone can explain the right way how to read the labels for me that will benefit Lil' Chris. It will save me time and money probably...hopefully;)

Ok, now that I just took a pic of it all, I realize that this is all junk food!! What kind of mom am I? lol I got tons of other stuff too to try. He's so picky though! We'll see if he eats any of it.

So which one of the above do you think is the best for Lil' Chris and why??

M

PS. Lil' Chris' latest song that he likes to sing is "We Will, We Will Rock You!!" It's from one of his cousin's toys that he played with weeks ago! What a memory, huh? lol

****UPDATE: I just gave a lil' cup full of the Reeses's Peanut Butter Chips to Lil' Chris and he "drank" them out of the cup and then said "Mmm good!" YEA!!! But... then he wouldn't eat anymore:( Hey, maybe I'll add some to the brownies;-) lol He seems to be liking the mini oreo's, he keeps asking for more of them:) He ate one Cheese and Peanut Butter cracker and then asked for more mini oreo's. lol He took a little taste of the York and then wouldn't touch the rest. lol I'll let you know how the rest goes:)

Ayla is 6 Weeks Old, D's Visit Pics, & Clinical Trial Video

Wow, where did the time go? My lil' girl is 6 weeks old today! It seems like yesterday I was still pregnant! She is doing GREAT!! Thank God!!

In the past 6 weeks, we found out that she doesn't have CF and she is gaining lots of weight and is learning so much! When we went to the dr.'s yesterday, her weight was 10 lbs. 7.5 oz.!!!! She gained 3 lbs. in 6 weeks!! She is now drinking 4 oz. of formula only, since I have to go back to work on Monday 3/16:( and she still only sleeps 2-4 hours:(

I've noticed a lot of differences between her and her brother when he was her age, I guess b/c of the CF. I never realized what a spit up baby Lil' Chris was until I had Ayla. She doesn't hardly spit up at all!! We could never burp Lil' Chris over our should, b/c of the fear of him spitting up(actually, now I realize it was more like throwing up, lots of carpet scrubbing:(. Lil' Chris couldn't take powder formula, b/c it would make him throw up more. We always had to use the concentrated cans which are very expensive!! Thank God for secondary insurance! Ayla takes the powder formula with no problems. I never realized how much easier powder formula is either! Another funny difference, Lil' Chris used to pee all over us all the time, Ayla hasn't peed once while changing her, since we got home from the hospital that is!! It's kinda funny that Ayla got her first cough and cold way younger than Lil' Chris did, and he's the one with CF! Go figure.

They both have a lot of similarities too though. They both had great neck control early on, both love baths, both look a lot alike, and they both love to smile:) I've noticed sometimes when Ayla spits up, she spits up like Lil' Chris used to at that age...arch back, straighten limbs, spit up comes out of mouth and nose, and then the screeching lil' cry afterwards that just breaks your heart. Maybe all babies do this, IDK.

Here are some pics of Ayla and Lil' Chris today. Lil' Chris did a good job keeping Ayla occupied while I watched Y&R. LOL;) She loves attention from him and he loves giving it to her(although sometimes he can be a lil' rough;)

Make an on-line slideshow at www.OneTrueMedia.com

As for an update on how they are feeling, Ayla's eye stopped tearing and getting all goopy at about 10pm last night. So the pressing that the dr. did earlier that day really worked! I'm glad I called and took her in before it got worse and turned all red. Lil' Chris is still coughing. He doesn't cough all the time, but when he does, it's pretty nasty sounding. He didn't have such a good day today. I tried giving him a new high calorie drink today, and about 3 hours later, he started throwing up like he used to when he was little. We have connected all the dots and realized that all those times he used to throw up like this was b/c of trying these kinds of new drinks...and guess what they all have in common.....SOY PROTEIN! Yup, he must be allergic! So now we know to definitely stay away from it, b/c he throws up on and off for about 3 hours after drinking it. Right now he is sleeping, b/c he is so exhausted. It drains the life out of him:(

On a happier note, here is a great video of a CF girl who does clinical trials to help find a cure for CF. Is anybody else doing any trial? I was never sure how I felt about letting Lil' Chris do them, but this girl has such a great attitude about it! Plus Carmen, Charmain's daughter, has been a great inspiration too! I just hope Lil' Chris grows up to be as caring for others as these girls are:) Click here for the video. A BIG THANK YOU TO ALL WHO PARTICIPATE IN CLINICAL TRIALS TO HELP FIND A CURE!! If it weren't for people like you, our CFers would no be where they are today!

Here are the pics from when my sister D visited that I promised. My favorite pic is the one where Lil' Chris wanted to wear the clothes that D brought for Ayla. So I tied one around his neck and then I tied the pants to his one leg and then put a headband on him:) He loved it and kept it on the whole time we were going through the bags of clothes! Good thing I have a little girl now to play dress up, huh Honey?!?

Make an on-line slide show at www.OneTrueMedia.com

E-mail from a reader

Hi all! M sent me this lovely e-mail from one of our favorite readers and I thought it would be nice to share it with all of you. Here is a little background on her story... her daughter (C) is in her 20's & participating in a CF research program in Europe. The hope is that the results will end up benefiting all CF'ers. Charmaine had never heard about the vest before reading this blog & her daughter is now actively trying to see if she can get one. It would certainly make a big difference for her rather than having to continue doing manual CPT.
I hope you will join us in praying for C... that she will be able to get a vest, that the research program will go well, for her continuing health & of course for our friend Charmaine who is far from her daughter during the program. Here is the email she sent to us...

29 June 2008

Hullo again, its Me Charmaine - sorry havent been in touch but my system was down. Had lots to catch up with though.

Congratulations on being Preggies........its a gift as you well know and I just want to tell you that although C has CF, my youngest daughter T doesnt......The Lord will only give you what you can handle (although at times you might not think so....)

Just a quickie about the trial C is on - she had more scans done this week - got to see her lungs in 3D which she said was awesome - but also showed how much muck is still sitting there - these scans were done over a period of 5 hours on Thursday and then Friday morning she was back at the hospital for more scans and they showed her how the mucus is sitting in the stomache - this cannot be helped, its a natural thing to swallow unintentionally. She cannot really say much as they keep the findings for their records and will only let her know when the trial is completed - which by the way is 2 1/2 years to go.....

She is still discussing The Vest with the clinic she attends - she reckons they are a bit slow at times but C is a determined person and once she sets her mind on something it becomes a goal and she wont rest until she has achieved..........which sometimes has taken her a long time but eventually she has got what she wanted. Hows that for determination!!

Please if you hear from Aunt D, wish her well with her packing and moving - and I wish her the very best in settling in.

With fond regards
Charmaine.

Neilcharm's Comment

Neilcharm, I hope you don't mind if I copy and paste your comment onto the blog? I just think that it is amazing what your daughter is doing not only to better herself, but to better ALL CFers! I know not too many people read all the comments, and I think that every CF mom would want to hear this, so they can pray for your daughter and for you, as I know it must be very hard on you as well.

Hi I just want to tell you that I read your blog every single day. I may not always comment but I adore the pictures of Lil Chris and the comments Aunt D and yourself give. About the programme, my daughter tells me at the moment she has had MRI, CT scans, bloods, exercise programmes, physio (which is no longer percussion but breathing from the diaphragm, coughing up the sputum and is on DNASE which is a very expensive drug - in South Africa only the very rich can afford this medication whereas in London she gets this meds on the NHS because she attends the CF clinic at the Royal Bromton Hospital (we jokingly call it the Royal Brompton Hotel). She does all her IV treatments at home and at work - the company she works for have a medical room which she has permission to use at any stage. This programme is a 3 year stint, whereby they measure, scan, bloods, sputum, diary, etc....and she has to go to different hospitals in Britain, mainly in the London CBD area for different sections of the programme. When she becomes ill with infection, the programme gets halted until she is better and then they carry on because the results can differ quite a bit with the antibiotics. Thats all I know for the time being but that she is doing so much better there than here in SA. I do miss her terribly but she is a determined little miss (shouldnt call her that - she's 27yrs old) and has goals set in her life that she is determined to achieve no matter how long it takes. Whenever I do get info from her regarding the progress of the programme I will be sure to let you know. Promise. Afterall, this programme is for the benefit of all CF'ers. So Hold thumbs. God Bless you and your whole family and I hope this is a little bit of hope for you. Till next time....please keep us updated about Lil Chris.....brings back sooooooo many memories when C was growing up......hugs xx x x x x x

I'm so glad to hear from you again! I was hoping you still checked in with us. It is great to hear you check in daily and that it brings back many memories for you. Please feel free to give any advice at any time, Lord knows I need it: )
Hope to hear from you again soon,
M