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!
M
PS. Lil' Chris is doing GREAT!! No colds or coughs!! Hooray!! Sorry for sounding so grumpy today;)
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7 comments:
Don't forget us grumpy CF dads. I had a sudden "oh my God, she has to do this the rest of her life" moment when I took my daughter out to breakfast. As I was giving her enzymes (as I do with every meal and snack) it just hit me again why we had that routine. We care about our children so much that this disease does make us grumpy from time to time.
I have those times when it just seems like a slap in the face. I love Phoenix, I love who he is, I love what makes him him! But then something happens and it reminds us that CF is part of him.
Glad to hear Lil'Chris is doing so good! Summer is almost here, time for nice weather!
I hate those moments too, but we definitely don't have that paperwork to fill out! Yuck!
But this time of year, when the fundraising begins, it gets me grumpy when I realize it's MY kid we have to raise money for...sigh...
We do not have to fill out paperwork at our clinic, and I am thankful that we don't have too! However, our quarterly clinics are usually 3 hours so we cover a lot and it's pretty detailed every time, so maybe that's why. I feel like our clinic does a good job staying on top of things, as I'm sure your's does too if they are having you fill out info to talk to you about. Do they do a chest x-ray every year around his annual appointment? Ashley has her labs but not x-rays. Hang in there! Lil' Chris is lucky to have you as his mommy!!
Mine is in June too and I'm filling out the same paperwork!! It IS a ton of stuff!!
We do not fill any paper work out for our clinic visits. The visit is typically 3 hours...revolving door type deal with the CF team so lots of questions, but no paper work to fill out!
Glad to hear things are going so well. Doing a great job mom!
You are a GREAT Mommy so don't ever think otherwise! Almost all toddlers go through this stage of not wanting to eat. Ask Stephanie. Sometimes when I am reading the blog or watching a video, the same thing happens to me even as his grandparent. I think it's easier for us being so far away to forget about the CF until these moments. Not that we forget but it's...I'm not sure what to write but I think you all understand what I mean. I cry too, I get grumpy too, and at times I get angry. I think it is just a natural reaction.
I love you all very much.
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