A great appointment at the CF Clinic

Well, the appointment on Tuesday at the CF Clinic went very well. We came home with gobs of information in our minds & on paper... always a bit overwhelming. But, the important part is that Lucy's checkup went wonderfully. Dr. Larson saw her this time (Ricker & Larson are both pulmonologists, Larson started the clinic years ago & then Ricker joined him) and we enjoyed getting to know him & his sense of humor. I appreciated the consistency in comments from both Dr. Ricker & Dr. Larson, it's obvious they're on the same page & feel the same way about Lucy's situation. So, the highlights from the 3 1/2 hr appointment ... Lucy's weight was up again! She weighed 8lbs 7oz - they were very pleased. Apparently, the measurement that they would like to see above the 50th percentile is the weight to length ratio - at this point she's 49th for weight, 74th for length, but only 16th for weight to length... I'm still not sure I understand it - not a measurement I'm used to following. We'll be looking to see that the ratio continues to improve, she went from 6th to 16th in 2 weeks, so that's great. One bit of comic relief during the appointment came when Randy asked Dr. Larson about Lucy & her ability later on to exercise & participate in sports... Randy asked if team sports would be okay (answer - definitely) and when we should begin an exercise routine... Dr. Larson's quick reply was great, "Well Randy, I believe we'll start her on the swim team within the next 2 weeks." He had us all laughing but then also said one thing that will be incredibly important is for Randy & I to set the example by maintaining a fitness routine of our own & then involving her in it. One thing we were shown (in probably a bit too much detail) was how to perform CPT (chest percussion therapy) by either "clapping" her back & chest or using a little vibrator to loosen the thick mucous in her chest. She doesn't have any noticeable buildup of mucous, but they feel strongly in preventing it from ever building up by being regular with 5-10 minutes of CPT twice daily. Last but not least... the enzymes that Lucy's on... Randy looked them up & discovered they cost over $1 per pill... she gets one with each breastfeeding & may have 8-10 feedings per day... we started to wonder/worry what our insurance coverage would be on these... So the incredibly miraculous blessing came when they said they had enrolled Lucy in a program where all of her meds will be covered by drug company & the CF Foundation for at least the first 3 years of her life! And, as if just to prove how awesome & on top of things they are, I opened the door this afternoon to find a package stuffed full of her expensive meds sitting on our doorstep! God is good - and so are the people who make the CF Foundation & local clinic function!



Sorry I don't have pictures with this posting, but I'll will get some up tomorrow. Thank you again to everyone for your incredible support. I especially appreciated a call from Matt K. at the Oly-Lacey Church of God today - your prayer over the phone with me really meant a lot.