Azer is off of the antibiotics and seems to be doing ok!
I received this from a CF parents messenging group. I thought ya'll might like to read it. Some of it is really funny.
You Know You've Been Dealing With CF Too Long When ....
- You've used puppets, toys, sung, danced, pleaded and generally made a fool out of yourself all in an effort to get your child to eat.
- You've stockpiled enough applesauce to start your own factory
- You find loose enzyme beads literally everywhere, the car, your clothes, -the ceiling (not joking)
- You count more calories than sheep
- You add salt to everything and use butter as a general cooking base even when a recipe doesn't call for it
- You panic when your child sneezes
- Your child coughs and you immediately chant "Xopenex four times a day!"
- You check websites daily for news about a cure
- Your house has more medications than the pharmacy
- You've actually found yourself explaining a medication to the pharmacist instead of the other way around
- You've considered dying all your child's clothes yellow to hide the vitamin stains
- Your medical bills are looking more and more like the national debt
-You've prayed for your child to be fat
-You have a strong urge to smack whiny parents of "normal" kids
-You've actually found yourself exclaiming angrily in the grocery store upon discovering extra-cheesy mac doesn't have more calories than regular (sadly true)
-You know what the poopie dance is, and you've done it
-You've had long involved discussions with other parents about poo
-You've started referring to everything in acronyms (CPT, PA, MRSA...)
-You're seriously considering a medical degree, cause at this point you know more than most doctors
-You've reduced a complete stranger to tears by yelling at them not to touch the baby
-You can describe the hospital's daily menu in exact detail
-Purel and Lysol are your new best friends
-You've considered life-long quarantine for your child
-You've told someone off for coughing near you or your child
-You have multiple doctors on speed dial
-You refer to CPT as your child's nightly beating
-You've bought a fancy baby scale for peace of mind
-The pediatrician sees you more often than their own staff
-You tend to refer to life AD & BD, After Diagnosis and Before Diagnosis
-You've cried over half a pound
-Your child comes with an instruction manual if you leave them with a sitter
-You've forgotten what normal is
-You find empty enzyme capsules in your pockets
-Your child wears a neb mask more easily than they do a hat
-Your child has started trying to do their own CPT
-You own every Baby Einstein video made and are eagerly awaiting more just for something different
-You've forgotten to put meds in the nebulizer and actually let it run several minutes before discovering the problem
-Your after clinic routine at home looks like a hazmat excercise
5 comments:
now being a sufferer i can agree to most of them and can imagin my mum doing other things on that list but whats this about?
"You've stockpiled enough applesauce to start your own factory"
The applesauce ... well I use applesauce to mix in his enzymes. I feel like just pushing the capsules down his throat sometimes though. The dietician says that the applesauce protects it so it makes it down into the intestines. It seems to work just fine if I mix it in with a tiny bit of whatever he's eating and feed it to him quick.
ah, i see
but, i have to open my creon too, and ive never heard of that before, and i've never had any problems.
probably horses for courses and all that.
Oh my word Lydia! I have been dealing with CF too long. :)
I agree with all these things! I have however been putting enzymes on just about anything that isn't dairy. :)
We no longer use applesauce as a staple and that's because Kai was refusing.
How is Azer?
Azer is doing pretty well. He takes his enzymes in pill form now, so I don't have to open them up anymore.
But I used to mix his enzymes with anything at all that happened to be in the form of "mush". I found that he was able to get them down just fine as long as I gave them immediately.
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