While visiting with our "team" at the
CF Center yesterday, I admitted to the social worker that I hadn't read the literature they gave me nor watched the dvd they gave us either. She said, "Good! CF will always be here, you spend your time doting on your newborn. CF won't be going anywhere."
That was a good reminder for me. And frankly, that's the mindset I'll be having for awhile. I know there is SO much to learn. I know there is SO much that we'll be doing. But I also know that Avery is only so little for so long. And I want to enjoy it and not always think about our next doctor's appointment, what treatments she'll be doing, what medications she'll be on, or what her life will look like at 5, 15, 25, etc. We
are learning gradually as we go, and that's enough for me right now. (Thankfully, we've got a few years before we introduce things like her daily nebulizer and vest routines.) We've been introduced to many of the people on our "team" so far, and they've all been wonderful. We'll get to know them well over the years until Avery transitions over to the Adult Center (some do at 18 and some wait until after college). I guess they'll feel a little like family. We'll be seeing them once a month for this first year (or so?), and then we'll be making the regular once-every-three-months visit for the rest of her life. Cultures, PFTs, CPTs... so many things to check and hear about. I'm thankful she's in good hands.
As a run-down for those interested, we've already met our Pulmonologist (who is the Director of the Center and an AMAZING doctor), his Fellow who will also be working with us (also a nice guy), our social worker (very kind, helpful and informative lady!), our nurse specialist (who responds to emails quickly, lucky us), our nutritionist/dietician, our respiratory therapist (who has a 26 year old sister with CF and is very encouraging!), and the research coordinator. I think we still have a few more doctors to meet during our next few appointments (I think they're easing us in since we've spent about 7 hours with them in the past two visits!).
At our visit yesterday, we actually started at the lab to get a sweat test done for both Avery and Benjamin. The sweat test is the "final" test that most kids get to see if they indeed have cystic fibrosis. Our doctor wanted to just make doubly sure that Benjamin doesn't have CF, so he wanted them to get it done together. Since we already had the genetic panel done on Avery, we already knew her results, but the doctor wanted to use some of the information from the test for other reasons. (FYI- People with CF sweat extra salt... so that is what they test for and also why we have to give Avery extra salt each day.)
Benjamin did a great job during the test (even though it was during his naptime!) and we pretended he had robot arms (PS - the test does not hurt at all, just requires patience). Such a sweet kiddo! He also sat patiently as we then went up to the CF Center and met with a slew of folks. Trooper!
{Oh yeah - and we confirmed today that he does
NOT have CF. WOOHOO!}
We learned yesterday that Avery has finally surpassed 7lbs and was gaining weight well at about 1oz per day! The doctor said her pancreatic enzymes (the things that are supposed to digest fats and proteins for you) aren't really detectable, so he is increasing the amount of enzymes we give her before each feeding which will hopefully help her be more satisfied with the food and keep gaining weight! We were also able to ask the doctor more questions about CF (but again, not too many) and learned (for instance) that many CF patients develop diabetes later in life because of pancreas issues. Fun stuff, huh? We also learned how to give Avery "chest physiotherapy", which is essentially us pounding on her lungs twice a day for a certain period of time to clear out mucous. This will be a new norm for her as we'll do this every day, twice a day (or more if she's sick), until she's old enough to get the vest. Then she'll do it about 2-3 times a day for 30 minutes at a time when she's older. More fun stuff, huh?
Other than that, not too much to report. We certainly don't want to make CF a focus in our home, but we also want to be aware of the changing needs of our little girl and how they will affect our family. And we'll also have to make adjustments here and there to our daily lives to make sure we're keeping her as healthy as can be. It's just a new "normal" for us now. I'm thankful that we're getting eased into it though, because it's not easy. But whatever we have to do will be worth it to keep our little girl healthy and living a happy, long life.
