He is sooo fun. He is smiling, laughing, squealing with delight.
I can't remember life before him and I don't really want to! He is just so fun and is the best companion. :)
Today we had his monthly clinic visit. He is such a rockstar.
He is up to 12 lbs 8.8 oz, which is a pretty big feat for someone battling malabsorption! The dietitian was pleased and asked me to start thinking about solids. We're thinking about it but that's about it. He is starting to actually eat his applesauce rather than push it back out with his tongue, but we'll just keep looking for the day when he's ready. I actually think my life will get a little easier then. Won't have to pump because we'll be able to just add fats to his food and he won't have to eat nasty salty applesauce, we'll put the salt in his foods. But, I'm not wishing anything away or trying to rush it along. All when he's ready!
We did start a new treatment for him today. Yes, a new one. I thought we were maxed out on treatments (at least now that we're not on any antibiotics) but I was wrong! We have now started Hyper tonic Saline through the nebulizer too. This will happen twice a day, before his percussion therapy. I thought I might burst into tears when they told me they wanted to start it. Basically, he sounds like he's on the verge of getting a cold and so they just thought they'd do a trial dose in the clinic to see how he tolerated it. I have never heard him cough the way he did during the treatment. He was seriously moving some icky mucus up and actually coughing it OUT. This is new. He sounded totally clear after the treatment and his O2 levels and lung retractions were better after they did it! I was shocked. I could actually see an improvement in 15 minutes. So, although this tacks on an extra 15 minutes twice a day, I think this will really help him! It sounds like we'll use it on an "as-needed" basis when he is getting gunky or starting to cough more. But, lots of people who participated in the recent HS study chose to continue it even though they weren't symptomatic anymore. Pretty amazing what is available to us through medicine. I keep thanking God that we have all of this at our fingertips. I can't imagine if we still didn't know what was wrong with him (lots of kids still don't get diagnosed until they're 2 or 3) or if we knew what was wrong but just didn't have access to the care we do. So until the day that there's a cure for CF, we'll just keep plugging along and keeping him as healthy as we can!
(By the way, if you're in the Salt Lake area, we're starting a team for the CF Foundation local fundraiser walk which is on May 21st! Keep your calendars open... we'll be posting/sending out sign-up info soon. :)
God has been good to be giving me extra doses of grace, strength and lots of perspective. I made the mistake this weekend of blog-hopping to different CF mom blogs and got completely overwhelmed. Read stories about women losing their young children to CF and I just lost it. Not choosing fear or anxiety or any "what-ifs!" Choosing joy, optimism, and trust in the God who is the same yesterday, today and forever!
Here are a few new pics of the J man. We just fall more in love with him everyday! God is so good to give us this experience!
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