It has been awhile since I have written an update. I suppose in my mind no news is good news. However, we got some good news yesterday so I thought I would share. Faith had her CF Clinic Visit yesterday. It felt weird driving to the Children's Hospital as it had been 2 months since her last visit. When we first started this journey we were going once a week so it is nice that the visits are spread out. Not to mention it means our little girl is doing great.
Faith met with her team of doctors and they were all so pleased with how much she is grown. She is a little monkey. She now weighs 16 pounds 8 ounces and is above the 75% for her age. That is amazing news and the doctors are so happy with her progress considering when she started she was in the 5th percentile for weight. We like to call her our little porker. When she met with her nutritionist Sarah, she could not believe how much food Faith was eating. While she was in the room Faith devoured two things of sweet potatoes in less than 5 minutes. We did have to up her enzymes she takes with every meal as she is not absorbing all of the nutrients and not staying satisfied. She was taking 1/2 enzyme with every feed and is now onto 1 enzyme per feed. We are hoping this will help keep her fuller longer instead of eating every hour!
In the middle of the visit we also had her RSV shots done. This was her second round of 5 shots total. Respiratory syncytial virus (RSV), which causes infection of the lungs and breathing passages, is a major cause of respiratory illness in young children. She was given the two shots at the same time in her leg. She did really well with these. Her sister Kaylee has them done as well so at least she doesn't go through it alone. After her shots were done the Doctor came in and listened to her lungs. She said they sounded wonderful and Faith looks amazing. She is very pleased with how she is doing.
While at clinic Faith gave a poop sample to test her pancreas. A stool analysis is done to see how well the pancreas is working and if pancreatic enzymes are reaching the intestine. Increased fat in the stool or low enzyme levels can mean that a person has digestive or pancreatic problems. As I understand anything under 100 is not functioning and Faith was at 104 a few months ago so it will be interesting to see the results. We also started bloodwork to get a baseline. The blood drawn tests for her CBC (complete blood cell count), red blood cells, white blood cells, liver enzymes, vitamin D, blood clotting ratio, platelets, electrolytes (sodium, potassium, chloride, etc), and antibodies. This was the first time she had blood drawn. I went back in the lab with her and not sure if I can do it again. I have never felt so helpless watching my child scream and kick and not being able to do a thing about it. After what seemed like an eternity the needle was out and I picked her up to comfort her. I asked if we were done, but the nurse said we need to make sure we have enough. As they were filling the vials I noticed they were running out of blood and then the words came we have to poke her again. I could have killed the nurse at that moment. So they poked Faith in the other arm and she was so hysterical she was hyperventilating. Both of her arms bruised instantly. They ended up taking 5 vials and as soon as this one was done I was out of there. It took awhile to calm Faith down, but eventually she did and then fell asleep. It was a rather long day, but all things considered we got wonderful news that Faith is doing great. It might not be much for some people, but to us it means the world. Until there is a cure we will strive to keep our little girl as healthy as possible. She does not go back for a few months so now she gets to just focus on being a child.
