Today was CF clinic day. They weighed her at 3.65 kg (approx. 8 lbs) and height of 55 cm (approx 21.5 inches). Little girl is getting a little too long for her weight - they measured her length twice to make sure she had grown that much. Oxygen was at 97.
They do a throat culture every month to see if she is growing any bad bacteria in her lungs. Usually those results are posted within a week to our online link and I'm sure they would call us if it came back abnormal.
Her Creon enzymes have been upped to match the amount of calories she is eating. From 1 pill before each feed to 1.5 pills and we are to fortify the breast milk with 1tsp of formula (was 1/2 tsp) to catch her weight up to her height.
Good news that I don't think I've posted here. She was approved for TennCare. The hope is that whatever our other insurance doesn't cover will be covered by this. We have the card in but the info hasn't been sent yet. I can now go to Child Special Services at the Health Department and finish filling out their paperwork.
Also another good thing -- the CF Care Foward finally got all our info and sent vitamins for her. To explain the need for vitamins - The fat-soluble group has vitamins A, D, E, and K, which are found in fatty foods and oils. After we digest them, these vitamins are stored in fatty tissue inside our bodies, ready for future use. Because people with CF have trouble digesting fatty foods, they also have trouble getting the right amount of
fat-soluble vitamins.
For the next year our visits will be monthly then after that hopefully it will go to quarterly. So right now our next visit should be in January. We have decided at that time to go ahead and have the genetic testing done along with the annual labs (hemoglobin, etc).
