Today was Lily's hospital follow-up appointment. It went really good! Her oxygen level was at 95 and she weighed 31 lbs! Amazing!!!! She still has 2 more days of PICC Line meds. Our St. Louis trip is still in the works for her lung transplant evaluation. Hoping for the best about that...
Her doctor also gave her the ok about going back to school tomorrow! She is so excited! I am praying that she can keep up and stay healthy! After missing 2 months of her kindergarten year, I am so happy for her that she gets to go back! This means we are making progress to a somewhat normal life. That's all I can ask. I just want Lily to experience getting to be a kid & seeing how simple life can be! I feel like tomorrow will be the first step of just getting to be her mommy again, instead of her "nurse" too.
Kalydeco still seems to be doing its job! She has been so happy, energized, waking up without coughing fits, and just feels good :) It's so amazing to watch her play again & be hyper!
At the doctor today, I asked what her sweat test numbers were when she was a baby. It was 119. A sweat test is taken when blood work shows that the child has CF. It just ensures that it is definite. Back when we took this test, I had no idea what the numbers meant, but now that I know more, I was wondering what they were. I am anxious to redo her sweat test in a few months to see how much lower that Kalydeco makes it. People without CF have low numbers when doing a sweat test and I have heard Kalydeco is bringing some numbers down to where it doesn't even show they have CF. Although her genetics will always say she has CF, it would be amazing to have a sweat test say something different!
It still feels so unreal to be able to say Lily is in Kalydeco! We are so blessed!
Her doctor also gave her the ok about going back to school tomorrow! She is so excited! I am praying that she can keep up and stay healthy! After missing 2 months of her kindergarten year, I am so happy for her that she gets to go back! This means we are making progress to a somewhat normal life. That's all I can ask. I just want Lily to experience getting to be a kid & seeing how simple life can be! I feel like tomorrow will be the first step of just getting to be her mommy again, instead of her "nurse" too.
Kalydeco still seems to be doing its job! She has been so happy, energized, waking up without coughing fits, and just feels good :) It's so amazing to watch her play again & be hyper!
At the doctor today, I asked what her sweat test numbers were when she was a baby. It was 119. A sweat test is taken when blood work shows that the child has CF. It just ensures that it is definite. Back when we took this test, I had no idea what the numbers meant, but now that I know more, I was wondering what they were. I am anxious to redo her sweat test in a few months to see how much lower that Kalydeco makes it. People without CF have low numbers when doing a sweat test and I have heard Kalydeco is bringing some numbers down to where it doesn't even show they have CF. Although her genetics will always say she has CF, it would be amazing to have a sweat test say something different!
It still feels so unreal to be able to say Lily is in Kalydeco! We are so blessed!