need advice

[anonymous]

Hi, on giving the cpt treatment, I do it while my grandson is sleeping. I pick him up while he is sleeping in the morning, sit in my recliner and put his mask on and give him a breathing treatment, and do his back, and sholder cpt. while sitting up at the same time. His cf nurse told me that I could do this to save time. Then I lay him down, on a pillow (head down) and finish is cpt treatment. He sleeps through the whole thing. He is 18 months old.

On the emzymes, I was told not to use banana's because they break down the enzymes in the intestines. I sometimes also have a problem with Landon spitting his out. But most of the time we do ok.

My biggest problem is that he is allergic to milk, chocolate, peanuts, and eggs. This really cuts down on what I can fix for him. I did finally find some soy yogert and I make a smoothy with his soy milk.

 

[jonandlindsay]

Amber -

I'm glad to hear things are going a little better for you. When Ella was a little younger and having a tough time with the enzymes I started letter her choose what food she wanted to take it in. We've also spent a lot of time explaining to her why her enzymes are important. Of course, she didn't quite get what we were saying at the time, but after hearing it over and over she now tells us that her enzymes help with her "gigestion". Kids are crazy sometimes. Oh, I also sometimes gave her a bit of enzymes and then let her take a bit of whatever she wanted and went back and forth like that until all the enzymes were gone. She loves ranch dressing, so we even stole a song from Mary Poppins.... "Just a spoonful of ranch dressing makes anything go down".

I agree that CF sucks. I was just thinking today that for the most part I go along with our day taking it one thing at a time, doing what I need to do for Ella... kind of like with blinders on.. and then, for whatever reason, every once-in-a-while I stop and look at the big picture and it hits me. How much time we spend on treatments, meds, dr. visits... and I think about the childhood Ella is missing out on and it's just not fair and it's awful. I was having one of those bad days a few days ago and was talking to my mom and she asked why I seemed mad at everyone and I said "We just got dealt a really crappy hand in life and usually I'm pretty good at dealing with it.. but today is just not one of those days." So be it.

Our life is different. We look like we lead normal lives, but we're really in our own little realm of existence. But recently I've been doing a lot of work with the CF Foundation and have met a good number of adults with CF and pretty much across the board they're amazing people. So there's got to be something said for adversity and rising above, moving past, developing character. And if you're taking the time to be a part of this forum, it means you care and you're working, and learning, and being the best possible parent you can be.

Good luck... keep us posted.

~ Lindsay
Mom to Ella, 2-3/4 w/CF

 

[amber682]

Thanks to everyone for all the suggestions, very helpful.<br>
<br>
Lindsay, that second paragraph describes it exactly! Also, I hadn't
tried ranch dressing, but think I will. Vinny loves ranch!

 

[Ratatosk]

<img src="i/expressions/face-icon-small-sad.gif" border="0"> I'm so jealous! Max is a food purist and HATES having anything on his food -- no whipped cream, no ranch dressing -- once threw a fit 'cuz we were at a brunch and there was chocolate on his strawberries. Argh!

 

[amber682]

Oh don't be jealous! Although he does love ranch dressing on
lettuce, he wants everything plain! No ketchup on fries, no syrup
on waffles, no mustard or mayo on a sandwhich, no jelly on toast.
He won't even eat crackers that have peanut butter on them, which I
wish he would because it would be a good snack.<br>
This is funny but he doesn't like foods that feel slimy or gooey or
sticky in his hands. I thought toddlers loved that kind of thing,
but not mine. He literally won't even touch sliced oranges or
peaches because he doesn't like how how they feel. <br>
Toddlers are so funny<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[izemmom]

Amber - My 3 1/2 year old (no cf) is like that about how foods feel, too. She will only eat bananas and most fruit with a fork. Actually, she rarely eats anything with her fingers and has been like that since she was about 18 months old. I ust make sure we always have a fork hand if we are eating on the go, and she does pretty well! It's wierd, though, isn't it?????

 

[mare]

I was diagnosed with CF when I was 3 years old. I am now 52!!
I can remember my Mom breaking open the enzyme capsules and sprinkling them on grape jelly sandwiches. It worked for me until I was old enough to swallow pills acceptably.. Hang in there Mom.

 

[charl72]

Amber<br>
<br>
Just to say you sound like a fantastic mum and keep up the good
work.<br>
<br>
Charlotte<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[my65roses4me]

I just wanted to thank you all for sharing your thoughts and
concerns. I do not have a child at all. But I have cf myself and am
now 31. Reading you rpost has reminded me how much I really
apreciate my mom and all she went thru with my brother and I. We
both were born with cf and we were only 2 1/2 years apart. My mom
was also a very young mom. She did her best and did it well. She is
a survivor. She taught me well. She never treated me like a
"sick" child. But at the same time made sure I knew I was
so I would take care of myself. She tells me stories of when I was
young and she tried to get me to take my meds. I guess she was
lucky in that sense because we both took our pancreas pretty easy.
But when we would get in coughing fits, I remember she would tell
us to put our arms in the air. It would stop us from coughing and I
always thought mom was a miracle cure, she knew how to make us
better. I recently asked her why she did that. I thought it was
some kind of science or advice from the Dr's. She I dont know what
made me start it but everytime she would tells us to do that we
would stop coughing. We just laughed together for a long time about
it. Its funny how mommies just come up with these ideas and us as
children thin they are amazing. My whole point is keep up the good
work and coming up with different ideas to make things easier for
you and your child. Thanks for reminding me how special my mom
really is!!!<br>
Khristina 31 yr cfer<br>

 

[anonymous]

Thak you so much Khristina! It made me teary-eyed to read that! My eyes are a little blurry now, kinda hard to see the keys. I hope my son feels that way about me some day!

Amber

 

[anonymous]

Hi, Well my son is now 5 but when he was around 19 months we had a custom vest made. Our insurance covered it. I actually still have the vest I beleive it was cut and altered. He threw such huge fits and with two children with cf I could not keep up with his fighting so my doc said even if the vest is a little big its better than nothing. He also spit out his enzymes somethimes but we used fat free pudding sometimes til at 3 he started to swallow them. Talk with the cf doc and let them know our docs have been wonderful with helping us make it as easy as possible on the kids. I hope everything gets better for ya it has for us it took some time. You'll be in my prayers
Jeanine mom to sydney9 w/cf , Trey 5 w/cf and Abbey 2 w/out cf