At Kathryn's clinic visit, she was 11.15 pounds (up from 9.39 pounds in April). She has increased her length by 1 inch and the circumference of her head by 1 inch. All in all, she is in the 33rd % for both height and weight, but for height to weight ratio, she is in the 50th %. What that means is that she is still small in both weight and height, but she is perfectly proportionate - just tiny in comparison to other children her age!! I just keep thinking that she will be the perfect size two that women with average builds wish they could be!! They said that average 6 month olds (her adjusted age) gain around 12 grams a day and Kathryn's weight gain over the last two months was 14.5 grams a day. So she is gaining what an average child her adjusted age would gain and then a little "catch up" weight - they just wish she could gain a little more "catch-up" weight, but for now she is still doing wonderful!! The only nutritional change at this time is to move her to a little bit more caloric formula which simply means making her formula a little bit differently, but the same stuff!
Two of her diuretics had to be increased because her CO2 levels were a little elevated in her blood sample. So they increased her Diuril and her Aldactone, but the good news is we are getting rid of one of the medications!!!!!!!!!! Her Lasix has become so minimal in comparison to her weight that we are going to drop it. She had been getting 0.15 ml twice a day, so for the next two weeks she will get it once a day and if she tolerates that, after two weeks, we can stop giving it to her altogether!! So we may be down to only 9 medications by Monday June 16!! And Dr. Lozano said that she is outgrowing some of her other meds too, and they are going to let those do the same thing - gradually get to the point that they are minimal doses compared to her weight and just let her drop them!! So even though we are still giving the same meds and the same doses, she is still weening from them because she is growing!!
She did excellent with getting her blood drawn. My little trooper just watched the nurse draw her blood and she did not even cry. That partly makes me a little sad because it means that she is so used to it, but at least she didn't cry!
Dr. Lozano was very pleased that her oxygen is down to 1 liter per minute and he said to hold there for a while, but he was very impressed with how much progress Kathryn had made since April. He suspects that she should be off of a lot of her meds and possibly her oxygen by Christmas or at least the first part of next year!! That would be amazing!! Of course, it would mean that we have to be super careful with her through next winter so she doesn't go right back on it, but we can certainly do that!!
We go back again for follow up in August!! Thanks so much for your prayers!! My fears can calm a little now!!