Tuesday, August 4, 2015

GI follow up and weight gain

I'm having a hard time remembering sleep last night. I'm thinking Reagan didn't sleep much. She was very vocal and active in her bed kicking all of her covers off again. I think she woke me up around 4am and I went in and covered her back up again. She was in a pretty good mood today but still very crunchy and tense in her body. Hands in her mouth a lot. Temperature regulation WAY off. And holding her pees again (her nurse had to use the "water trick" to get her to go). We gave her a bath first thing because the pits were getting pretty stinky (another nice side effect of precocious puberty). She had school this morning and other than getting a little overly excited when her teacher was trying to talk to her nurse, she did very well. Then we headed to her GI appt at Dell with brother in tow! Boy do I miss having Grandpa around to help out with him (he's vacationing in Europe). Thankfully Ryan did way better during the appt today, I think because he was preoccupied by the sea creatures on the wall! We did have to put Reagan's noise canceling earphones on, but they really seemed to help. We found out today that she's gained some weight. She's gone from 48lbs when we first started this formula to 52lbs. So instead of losing weight, which we were afraid she might because it is a lower calorie formula (and we had to increase her rate), she has actually gained! Good news. Her dr wants to increase her rate again (from 70mls/hr to 80mls/hr)...I guess just to make sure she maintains the increase? We're a little confused by that one. We're thinking why increase it, if she's already gained weight? I don't know. We definitely don't want her to continue putting on weight! That's not good for her or us! We're not making any changes just yet and if we do, it will be super slow! As far as commenting on her cycles or the changes we've seen with the pedialyte...he didn't really have any input. We're all hoping maybe the metabolic dr will weigh in on that on Thursday. But all in all, a good appt. And a good girl. Even though her body is not necessarily cooperating, she's been a sweet smiley girl. Hoping she can settle down and finally get some sleep tonight!


Clarissa R. West Writer said...

Oh I know that pitt smell very well! lol
Abigail has been hanging out at 52 pounds for about a year now. She was at 55 pounds right before her GI bleed in May of 2014.
What formula are you using now?

Reagan Leigh said...

She's on PurAmino. It's an infant formula so it's lower calorie (20kcal compared to 30kcal), but for some reason it really agrees with Reagan. Switching to it (both times) has stopped her nausea in its tracks! We did have to increase her rate/intake significantly just to get her enough calories. She went from 45mls/hr 20hrs a day to 70mls/hr 20hrs a day (but we increased it SUPER slowly...1ml/hr a week)! I think she's somehow able to digest it better because it is lower calorie. It's the only thing that's ever helped her nausea.