We went to clinic on Wednesday to see Ethan's team. Overall, it went very well. Ethan had only gained 1.4 oz in a month, but he still gained and held steady in weight so they were happy. He gained an inch in height! He's a little guy. He's in the 25th percentile for height for his age and 30th percentile for weight. Those are both still considered good since that follows his natural progression on the curve. I guess at some point his pediatrician was worried about the size of his head, but now it's slowed down.
We met with his pulmonologist and discussed how hard it has been to get Ethan's Creon (enzymes) into him at meals and snacks. For those you that don't know he needs the enzymes to help him digest his food. Without them or without enough of them he will lose weight and it will cause his stomach to hurt badly from have digestive problems. Dr. P said that we should work towards getting him to swallow the capsules by the time he's 2. That amazed me, since I can't imagine him doing that until he's closer to 3 or 4. We'll see in a few months if he's capable of it. For now, we continue to struggle with getting the enzymes down and getting him to eat more table food. He's a very picky eater and sometimes he won't even eat what we know he likes. The doctor says it's normal for kids his age to be picky. He basically drinks his calories. We know he's getting enough at this point because of the weight gain.
We went over his bloodwork. Thankfully he wasn't anemic. That came as a shock to me since he won't eat meat. I guess he's eating something that's helping with that. His Vitamin A levels were high so they will monitor that and retest in 6 months. Overall his blood tests looked good. They took a lot of blood for his yearly tests 3 weeks ago.
Dr. P decided to increase his enzymes to 17 Creon 6's instead of 14. The hope is that it will help him gain weight. We will be constantly be changing up his meds as time goes on to see how that helps him. For now, they have been increased and as long as we can get them down him we're hoping for weight gain over the next month. A weight check was ordered for October 12th.
We met with the new social worker for the CF Clinic. She was very nice. We don't have much of a need for a social worker at this time because emotionally, financially and physically we are all doing well. It's nice to know there's one there for us if we need something.
The dietician was out for the day so we didn't get to speak with her but it was okay since we didn't have any questions for her.
We're all set to go back for another CF Clinic in 3 months. Ethan's doing pretty well. He hasn't cultured pseudomonas which is great! We just got his cultures back from clinic. Everything looks good, but one thing that I'm not sure about. I'll update the blog when I know something.
