Carter and Emma had clinic appointments today. Both are doing - TopicsExpress

Carter and Emma had clinic appointments today. Both are doing great. Both have gained a little over a lb since August visits. Carter did his PFT, pulmonary function test, and scored a 119%. Thats fantastic!! He also let the doctor perform his sputum culture with no fight, no crying. This is a HUGE improvement for Carter, as he is not a fan of having a swab stuck down his throat to gag him and make him cough... ;) Emma did well too, but thats a given. She is a feisty little lady and doesnt let much bother her. The only big change for the kiddos was vest settings. We are increasing pressure and pulse frequency, quite significantly, for both kids. Tonight, we tested the new settings and it went off without a hitch. Neither seemed to notice the change and that makes me so proud. They adjust so well! After speaking with the researcher at clinic, we have been able to put the drug pipeline in perspective, according to how it relates to Carter and Emma. Currently, the CF Foundation is submitting a drug combination for FDA approval which will affect 50% of the CF community; those with duplicate copies of the F508Del mutation. This drug combo should be available for ages 12+ by next summer. AMAZING! It will treat the underlying cause of CF, rather than just treating symptoms. Carter and Emma have a single copy of F508Del and another less common mutation. Though the drug pipeline is soooo promising for Carter and Emma, and all those with cystic fibrosis, it looks like another 10+ years before a drug could be available to treat the underlying cause of CF in Carter and Emma...and the other 40% of the cystic fibrosis community. So, though we are close...so close to substantial life changing medications for all CFers...and someday a cure, dont forget that we are not there yet. We need your continued support - love, friendship, volunteering, donations! It all makes a difference and is crucial to the consistent progress being made towards a cure!! Thankful for today - that Carter and Emma are doing so well! I couldnt ask for more!!

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