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

Thursday, July 9, 2009

CF Clinic Update & CF Question????

I still hadn't gotten a call back this morning from the clinic, so I called them and the nurse said that his weight was actually up a little bit 27.9 from 27.6! I was shocked! Same thing for his height 34.76 from 34.41. Now this is what doesn't make sense to me...his BMI went from 65% to 43 %!! WHAT?!? How is that possible if he went up in both weight and height???? She said that it was b/c he grew so much so it threw it off. Does the difference between 34.76 and 34.41 seem that much to you?? Yeah, I don't get it. I REALLY wish they would have went over this more in our meeting. Can anyone explain this to me, b/c I'm lost???

I tried giving him that new drink and he drank a little at first, but then wouldn't touch it anymore. The same thing he did with the other drink he had at the clinic. I tried the strawberry sample, so hopefully he will like the vanilla sample. I highly doubt it though since he hates vanilla:( So now what??? It seems like we have tried EVERYTHING!! I'm just glad that he didn't get sick from those samples like last time. I was all prepared to be up all night with a throwing up child;-) I gave it to him purposely last night, b/c I have off today;-)

I also asked the nurse today what I should do about the new script the dr. wrote for the Creon 6, since we order over the phone from the CF Services. She said to just mail the script to them. I didn't know you could do that! Does anyone else order from CF Services? Just wondering, b/c a portion goes towards a CURE!

PS. We started the Augmentin yesterday and he HATES it! This should make for an interesting 20 days;(


Katey said...

What kind of drink are you giving him? Have you tried Carnation Instant Breakfast? I know it doesn't have near the calories and fat grams as say, Scandishake, but it's better than nothing. That's what I ended up drinking because my mom had a difficult time getting me to drink the shakes, etc. Anyway...I might have some suggestions for you!

I know that the weight percentile goes down as your height goes up. Even though his height went up too, it just depends on the amount. ALSO...age has a big part in it too. The older you get, the harder it is to maintain that great BMI (amongst other things). So since lil Chris is a little older now...that could have something to do with it. The older you get, the farther the weight and height are from each other.

daniel's mom said...

Hi, Just finished reading your last two blogs. Glad you got thru the annual appointment. I have never been able to figure out the whole BMI thing. Daniel's weight gain has slowed way down which is normal for his age, and his BMI still stays high. Good luck with the supplements. The dietician is a nice person, but I wonder how many feeding problems come from pushing supplements. The harder you push a kid to eat, the less they eat. Don't worry about the creon, BCMH picks up whatever your insurance doesn't, and you can mail the script into CF Services. Congrats on the swing set! It is amazing how many hours kids can spend playing on them. Enjoy your weekend! Daniel's Mom

Lovin Lane said...

Hey read about your shake issue my son would not drink the shakes either so my doctor suggested us to use the carnation and add extras to give even more calories, I dont know much about anything lol but we figured out a good shake, here is a recipe that we( my son and I) kinda altered and came up with.... He LOVES them, our whole family eats them yikes...we put the 1 carnation instant breakfast in blender add about 1/2 a cup of milk, few scoops of vanilla ice cream and frozen fruit of your choice.. Blend at smoothie speed and add more milk or fruit depending on how smooth you want it.... we have done, blueberry, strawberry, banana, triple berry, mixed fruit and more... Yummy Yummy.... you can add a raw egg for extra calories.... We double the recipe for others in the family.. They are good... pretty quick.. Hope you have a great day... Marcy

Auntie Steph said...

WOW...Lovin Lane's Carnation Smoothies sound awesome!!!! Worth a try!

Anonymous said...

Hey Michelle! Glad to hear the clinic visit went well for the most part. It's hard when it comes to the weight. I know for a while it was an issue with Jack and it was frustrating. Do what you can! He drinks Resource for kids in the red box. They have over 300 calories in a box. He calls them his milkboxes. Can lil Chris have any milk-based products? We have a closet full of flavored milkboxes that Jack HATES! I have no clue what to do with them. If Chris can have them and you want to try them, let me know!

The cough medicine thing is hard to. Because they have to cough to get their mucous up it can't be supressed with meds. Again, frustrating!

Little hurdles that's all. The ebb and flow of a CF kid I guess.

The kids are as adorable as ever! You're a super mommy!