Even though we had a rocky winter with antibiotics and steroids on and off and many trips to the pediatrician, we STILL managed to make it the full 12 weeks in between Hopkins clinic appointments. I love the 12 weeks between because by the time the appointment is here we feel like we’ve had a small break and I’m usually ready to check in on her weight and get a culture so I can know what’s going on in that little body.
We had our clinic appointment last Monday and overall it was good. She didn’t gain as much weight as they would have liked to see her gain, but she is still at a healthy weight and they’re happy with that. She is increasing her enzymes and taking 4 pills with everything she eats and we will see if that helps her put on more weight and if she is still having issues in the next few weeks we might switch her from the enzyme she is using, Zenpep, to a different kind. We were surprised to hear that it was time for her annual blood work. I think there are some kids that you can try to distract and hope for the best when it comes to tests and that kind of thing but Anna definitely isn’t one of them. She is so fully aware and listening to everything that there is no getting anything past her! I decided the best course of action was to explain to all to her before it happened and hoped she understood. I had already done the same about getting her throat culture and she wasn’t happy about it but she didn’t cry which is the first time she hasn’t while getting it. Surprise seems to have a very negative affect on her. I explained that we were going to go into a room and they were going to give her a shot in her arm and take some blood out to test it and then she would be all done. I made sure to tell her how proud we are of her and how brave she is, and there may have been a mention of Mimi taking her to Target if she was big and brave She surprised all of us with how amazing she did! We went into the room, I held her on my lap and she was totally calm the whole time. We didn’t have to hold her down in any way, she just sat there. I asked her if she wanted to look away and look at me but she said no and just watched the entire process. She didn’t shed a single tear! Needless to say, we were amazed and SO proud! She picked out Cinderella high heels at Target later that night
Her culture came back normal (hooray for no bad bugs!) and her blood work was a little low in Vitamin D. It’s common with CFers to have vitamin deficiencies which is why they test them annually to make sure their levels are good, but after this winter I’m pretty sure nearly everyone on the East coast is vitamin D deficient. Her vitamin D was around 24 and they want it to be around 33 so she is taking a gummy vitamin with her meds now everyday. She thinks it’s a fruit snack so it’s our easiest med by far. Our next appointment will be the week of Anna’s 3rd birthday in June. If we make it until then it will mark a full year of 12 weeks between appointments. So exciting! Anna is a princess and a ballerina, but most of all one tough little lady who is fighting CF (and her parents ) with everything she’s got.
Now we’re looking forward to SPRING and Anna’s Amazing Race! Don’t forget to sign your teams up!!! We can’t wait see everyone on May 17th.
Here’s the link to sign up and donate: