Today, I drove Ben down to Pleasanton to be re-cultured. We are in our second month of three consecutive ones to be official declared “pseudomonas free”. We drove over two hours, each way, for a 5 minute procedure. That’s what you do when you love your CF team! While we were only there for a short time, I had them weigh Ben and listen to his lungs.
Our “little” guy now weighs 31 1/2 lbs, putting him in the 94th percentile!! Music to a CF momma’s ears! He’s also in the 92nd percentile for height! We are so blessed with how well Ben is doing in the height/weight department. That doesn’t go unnoticed by us!
I also had our NP listen to his lungs. He’s developed a slight, dry cough the last couple days. His lungs sound “crystal clear” so we are chalking it up to the change in weather and all the dust flying around as we are packing. Next month we’ll go in for our third culture but it will also be a full CF check-up at UCSF. I also talked to our Nurse Practitioner (NP) about showing me how and what to listen for in Ben’s lungs. Next month, I’ll bring my stethoscope
(the one Ben is wearing in his picture) and she’ll show me where on Ben’s lungs I need to listen and what they should sound like. I hope this will help us become more in tune with Ben’s body and be able to identify when something doesn’t sound right.
In time, I will teach Ben how to listen to his lungs, thus helping him to be proactive in his health. I truly believe that Ben will become more proactive in his health if I give him the tools versus me telling him to do treatments because he has to. In time, and when he has the maturity, I believe that Ben will do treatments because they make him feel better not because Mommy said so.
I also hounded her for any new info she got while at the CF conference in Baltimore last week. Parts of me hoped she’d say, “a cure is only a few years away” ( I can dream!) but our team tends to be cautiously optimistic. In the past there have been drugs in the CF drug pipeline that have fallen through and I think she wants to be cautious and not get my hopes up. However, she reassured me that there are multiple drugs in the works that should have amazing results. Only time will tell!
After we got back to Folsom, B and I jetted over to our new place to see the progress and to meet up with Ryan. I can’t believe how much work has been done and how great it looks! We are so pleased with how everything is turning out. Thursday is the official move in day and we can’t wait!!