CF Clinic

Here's a quick recap of my appointment yesterday.

I started feeling a cold, extra tingly cough coming on Monday that slowly increased throughout the week. I was worried about what that might show for my lung function because my lungs were getting tight. And now this morning I'm feeling worse than I did yesterday, and I'm really looking forward to the weekend to relax, shake extra, and maybe even get in a nap.

I got to my appointment about ten minutes early, but didn't get called back to a room until about half an hour after my appointment time. Oh well, I had time to scroll through FB and relax after the long drive. The took me back to get my weight (134.9lbs) and then to the room. The people who cleaned it were just walking out and the cleaner smell was SO strong. They asked if I wanted to wait in the waiting room for 5 more minutes while it aired out and I definitely said yes. So, five minutes later she brought me back to the room and it was much better. Someone came in to do my vitals (100% O2 level and blood pressure was fine). Then came the PFTs...

I always get a little bit nervous before doing them because it's basically the whole reason I'm there. It guides the rest of my appointment and tells how my lungs are holding up. My last visit was very disappointing when I had a huge drop and was down to 81%. I was hoping to be a few points higher than that today because I had been feeling excellent until this week, so I was worried that my tight lungs would skew the results. My first blow was pretty good, and when I looked at the screen I saw 86%! I said, "Yes!" and then coughed my brains out for a little bit. Once I got everything out, I did the test again and got an 83...not too bad, but I was getting tired and tight. I coughed a bit more until I felt clear again, then went for a third test. Same result - 83. I could tell the last two were lower because of the way I was feeling, so thankfully they took the first test as my best one. :)

So even with this cold beginning, my lung function has gone up at least 5% over the last couple months. I am very happy with that. I think the combination of being healthier, doing all of my treatments, and joining my running group has definitely contributed to that increase. I'm a little worried I'm going to lose a bit of it by the way I'm feeling this morning, but hopefully I'll fight this nasty bug off soon.

Thankfully, I'm at a very healthy weight so I have some back up pounds to help me get over this cold. As a person with CF, it's always been very hard for me to gain weight, and it's always come off very easily, which was not fun! My body is going to be working extra hard over the next few days to fight this cold, which burns more energy and calories. So I'm glad and lucky to have that extra weight, so that if I did lose a few pounds, I'm still within a healthy range. The unfortunate part of being at the heaviest weight I've ever been is my belly. Oh the dreaded CF belly.....I posted about it several years ago when I thought I was at my highest weight (about ten pounds lighter than I am today - thanks Kalydeco). It's very common in the CF community to have a belly. It's the way our bodies are built and I don't think people who are not familiar with CF understand it. Yes, I look pregnant, but it's all CF belly. That's where I gain my weight (and in my face) and I also have a distended belly because of my digestion issues. CF patients frequently have bowel/digestion issues, extra gas and bloating which all shows in that area....just an extra lovely perk of the disease. So for those of you who keep looking at me funny...please stop. :)

Overall, I had a great appointment. The doctor was very please with my increase in weight and lung function. She wants me to up my treatments to help kick this cold or whatever is developing. Hopefully it'll disappear by next weekend when I'm running in the Turkey Trot! I'll go back in January for a follow-up (she said unless the weather is bad, then we can wait til February).

Anna - 2 1/4

Anna, Anna, Anna....

You've been keeping me on my toes lately, little one! I know a lot of people don't like the age two, but so far I'm really enjoying it...most days.

• You're a negotiator! Everything that we say, either you say the opposite, or some different version to try to get your way. If I say that we can read two books before bed, you'll say we can read three. If I say, first we read, then we go to bed - then you'll throw an extra step in there like "read, THEN snack, then bed" or anything to add your little twist onto it...
• Going along with the above trend - you don't like going to bed! Naps on the weekends are usually fights, and you're getting excellent at coming up with stalling tactics at night. For a while you'd scream that you had to poop. So, I'd bring you to the bathroom where you'd strike up a conversation with me while sitting on the toilet. When I'd tell you it was time to go back to bed, you'd say, "No I pooping." When I'd remind you that we've sat there for five minutes and nothing's come out, you probably don't have to go, you'd try to force yourself while saying, "It too hard! Help me, Mommy!" I hope those days are over, because they sure were frustrating!
• Along with some challenges though, you sure have some adorable qualities about yourself! You love to be silly! You even said one day in the car, unprovoked, "Hahaha, I so funny!" You really are!
• You're learning how to play pretend which is so fun. You're getting more interactive and actually playing with your toys the way they're intended to be used. You make play food, have a picnic with your babies, change their diapers, pretend that they're crying or hungry, you "make" things out of your blocks, make a zoo with your animals, etc. It's so fun listening to you play and the things you come up with. Just last night you put a blanket across your shoulders and started running saying "I a superhero! I super Anna!" 
• Potty training is going....some days you have no accidents at all, and other days you'll have up to three. One day at Grandma's you told Daddy, "I not poop in my undies anymore!" and I don't think you have. Your problem is not wanting to stop what you're doing to go pee...which I'm sure is common for this age. Or you have to take everything off before you go, and you can't hold it that long. You also had a week when you wet the bed 3-4 times, so that was a bit frustrating. We're trying to reward you with your Halloween candy and remind you more often, eventually you'll get it.
• You're so smart :) I know every mom probably thinks their child is so smart, but I really am impressed with how quickly you absorb things. You love the show Super Why and I'm totally okay with you watching it because you're learning your letters faster from it than me! I think you're up to about ten capital letters and it makes me so proud :)
• We have preschool orientation in January to get you on the list for school in the fall. I'm so excited for you to go to school because I think you'll do wonderful and I'm excited to see how much you grow up!
• You're becoming a better eater, you love to be outside, you like to read, you still want me to do everything for you instead of Daddy, you love to color, and of course, be silly! :-)