Wow...I had hoped to type out this post Tuesday night, but we were so incredibly tired from our journey to Atlanta (mostly because we had to leave Warner Robins at 6 AM for her 9:30 appt) that I couldn't force my fingers to type.
Here's the gist of the day:
1. We met with the Respriatory Therapist who did the culture and checked out Abby's lungs. Easy and painless.
2. We met with the nurse who just asked us a few questions, got a couple of vitals (length, weight, etc.) and moved on. Again, painless.
3. We met with the nutritionist who was concerned that Abby's height and weight percentile average puts her in the "red zone" which is below average. Abby's weight at 7lbs 13oz is in the 10th percentile while her length at 22" is in the 90th percentile. Since I am breastfeeding, she suggested that I put Abby on infant multivitims which contain vitamin D to help round out her vitamin needs since breastmilk usually creates a vitamin D deficiency in infants. She suggested we avoid vitamins with iron. She also requested another stool sample before we left for enzyme retesting. She felt that Abby (looking at me ... thin I am NOT, but I am tall...and Dave... 6'8" tall) is probably just going to be tall and thin, but she didn't want to chance that there was an error in the original enzyme test.
4. We waited on Dr. Caplan for about 45 minutes and because of a flat tire, he was going to be late...so we were told to go to lunch and come back...straight to room #2.
5. Met with Dr. Caplan. Explained using diagrams what CF affects and how it may possibly affect Abby. He did his check over of her and said she looked to be in good shape. I asked about CPT and he said that until she sounded like she needed it or there was cause to do so, that he wasn't going to prescribe it. Very postive outlook about her ultimate prognosis.
I asked him about having her retested. He has had no experience with Genzyme (the company that did our prenatal testing) having a false positive prenatal screen through amnio because they are looking for two specific mutations. They take great care to remove the mother's DNA from the baby's. He said that there is a higher risk of a false negative, especially if the mutations are hard to locate (as in very rare or new mutations). He was not interested in retesting her. After that conversation, I felt ok about not retesting her, but I am going to continue to ask at each appointment about it as a curiosity measure. Dr. Caplan just doesn't want to do anything invasive since she is so small and in his experience with her gene combination, a sweat test isn't going to show anything conclusive. I'm not in a rush any more about that issue.
6. All in all, Abby checked out fine and we are to report back every 6 weeks until 1 year and then depending on how she is doing, we'll go every 3-6 months after that.
Talked to her Pedi on the way home and he is delighted with how things are going. We all feel a sense of relief that things are plugging along with Abby and that she continues to be asymptomatic. Her next appointment is on Halloween, so that should be fun. Dave is taking the day off again, so we will probably make a day of it. I'm sure that if/when (Heaven Forbid) Abby becomes sick, the appointments won't be as easy, however, I'm just glad that we are providing the best up-front and preventative care for her possible!!!
Thank you to you all who have provided guidance and support. Dave and I appreciate it more than you know.
Em
Here's the gist of the day:
1. We met with the Respriatory Therapist who did the culture and checked out Abby's lungs. Easy and painless.
2. We met with the nurse who just asked us a few questions, got a couple of vitals (length, weight, etc.) and moved on. Again, painless.
3. We met with the nutritionist who was concerned that Abby's height and weight percentile average puts her in the "red zone" which is below average. Abby's weight at 7lbs 13oz is in the 10th percentile while her length at 22" is in the 90th percentile. Since I am breastfeeding, she suggested that I put Abby on infant multivitims which contain vitamin D to help round out her vitamin needs since breastmilk usually creates a vitamin D deficiency in infants. She suggested we avoid vitamins with iron. She also requested another stool sample before we left for enzyme retesting. She felt that Abby (looking at me ... thin I am NOT, but I am tall...and Dave... 6'8" tall) is probably just going to be tall and thin, but she didn't want to chance that there was an error in the original enzyme test.
4. We waited on Dr. Caplan for about 45 minutes and because of a flat tire, he was going to be late...so we were told to go to lunch and come back...straight to room #2.
5. Met with Dr. Caplan. Explained using diagrams what CF affects and how it may possibly affect Abby. He did his check over of her and said she looked to be in good shape. I asked about CPT and he said that until she sounded like she needed it or there was cause to do so, that he wasn't going to prescribe it. Very postive outlook about her ultimate prognosis.
I asked him about having her retested. He has had no experience with Genzyme (the company that did our prenatal testing) having a false positive prenatal screen through amnio because they are looking for two specific mutations. They take great care to remove the mother's DNA from the baby's. He said that there is a higher risk of a false negative, especially if the mutations are hard to locate (as in very rare or new mutations). He was not interested in retesting her. After that conversation, I felt ok about not retesting her, but I am going to continue to ask at each appointment about it as a curiosity measure. Dr. Caplan just doesn't want to do anything invasive since she is so small and in his experience with her gene combination, a sweat test isn't going to show anything conclusive. I'm not in a rush any more about that issue.
6. All in all, Abby checked out fine and we are to report back every 6 weeks until 1 year and then depending on how she is doing, we'll go every 3-6 months after that.
Talked to her Pedi on the way home and he is delighted with how things are going. We all feel a sense of relief that things are plugging along with Abby and that she continues to be asymptomatic. Her next appointment is on Halloween, so that should be fun. Dave is taking the day off again, so we will probably make a day of it. I'm sure that if/when (Heaven Forbid) Abby becomes sick, the appointments won't be as easy, however, I'm just glad that we are providing the best up-front and preventative care for her possible!!!
Thank you to you all who have provided guidance and support. Dave and I appreciate it more than you know.
Em