Ughhhhhh...Lil' Chris' annual 2-3 hour CF clinic visit is coming up in June. I got the paperwork in the mail the other day, so I am busy filling out ALL the paperwork...I HATE paperwork!! Does EVERY clinic do this??? We have to fill it all out, send it in, and then they will review it, and then go over it with us at our annual appt. and tell us what we are doing good and what we are doing bad.
I have to fill out a "Parent Questionnaire For Annual Review," and then a "Food Questionnaire." They are a pain to fill out!! The food questionnaire is 6 pages long, asking everything under the sun about what he eats!! Lil' Chris DOESN'T EAT ANYTHING!!! I feel like the worst mother EVER!! I have to check "Never or less than once per month" on just about EVERYTHING!! They must think I'm the worst when they review it :( I can't force him to eat foods or try new things...trust me I've tried! Hopefully the visit will go smooth and they won't recommend him seeing a speech therapist again on how to learn how to eat different foods. He knows how, he's just stubborn like his dad...I mean me;-) LOL
When I'm done, I have to make an appt. to get his chest x-ray done and blood work done before our annual visit so they can review the results before our visit and then go over it with us. I hate it that he has to go through this EVERY year for the rest of his life!! Poor kid. This is nothing though...when he turns 6 he will have to also do a PFT(Pulmonary Function Test) and an Exercise Test, when he is 10 he will have to add a DEXA Scan(bone density test that looks at bone health), and an Oral Glucose Tolerance Test to screen for CF related diabetes. Just crazy what all these CFers have to go through when they get older. It is a progressive disease though! We knew that from the beginning.
I probably sound very grumpy, but I'm not. It's just......all this stuff is a reminder that he has CF. CF moms, do you know what I mean? It's almost like you get into your routine of all the daily meds, Vest treatments, extra calorie foods, and even the quarterly CF clinic visits...that you almost forget about CF, b/c you are so used to it all! But then when you get this packet in the mail once a year....it's like a slap in the face!! It's a reminder that your kid isn't like every other kid. It's like the clinic is saying to you "Hey, don't forget...your kid DOES have Cystic Fibrosis, a DEADLY disease, and we need to keep a close eye on him!!" Wow, I do sound grumpy;) LOL I just hate the reminder, I guess. We try to live as normal as possible, and not let CF control what we do and when we do it.
I have to say, all these tests, paperwork, and annual clinic visits are great though...they help the doctors to stay on top of the disease. I don't want to think about what CF would be like without them!
PS. Lil' Chris is doing GREAT!! No colds or coughs!! Hooray!! Sorry for sounding so grumpy today;)
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