The kids had their check-ups on Friday all 28 days post treatments (the ones going all the way back to January). Cayden won the gold with a weight gain of one pound and a height gain of one inch! All since late December. Amazing. Trinity didn't even place. Only 4 oz. More "fattening" up for her. More butter, more shake mixes, more whole milk!
Confession: I am a glutton for punishment.
Trinity FINALLY is at baseline and not on antibiotics so she could finally start the hypertonic saline study for infants. See previous blogs for more info on this. Basically its an approved treatment for older kids and adults with CF but has not been tested in infants as of yet. That's where Trinity comes in. The treatment is fairly similar to TOBI, twice a day after therapy. Yes, it means more work but it also means excitement for the CF world. Until 4 years ago, this simple treatment was a best-kept secret for Australia surfers who had CF but couldn't figure out why they were so much more healthy and less frequent hospital stayers. The connection was the salty water they ingested from surfing. Such a simple solution! The study is 48 weeks long, but fairly simple. No hard core diaries like Cayden's enzyme study we did this past summer. We have to keep all the vials though and record any health/medication changes. The study coordinator commented on how cool a kid Trinity is. She totally is. She sits ALL by herself and holds the neb. mask if I need to get the other kids ready in the morning. So precious is our Trinity. The study coordinator is also the person that does the sweat tests with infants to diagnose CF. We made a deal with her: we do the study, you give us a negative test result in May!!! The staff at the Children's hospital is our second family.
We've made it to week 3 of Chris working out of town. This week we're staying over night at his hotel. It's great to be away from home! Thank you for your prayers. They make our days (and nights) much smoother. Baby 4 will be here in t-minus 9 weeks :)
No comments:
Post a Comment