Friday, July 30, 2010
Holy Moly! This post is finally being written. We have been on the verge of writing this every night for the past three of four nights. So sorry. We do have updates and news regarding her appointments, so unless we're interrupted again we will try and get it out.
First of all, the bad news is that Karsie lost weight. Kind of a lot. She weighed in at 16 lbs. 12 oz. That's about a half pound loss. Amazingly she's still on the charts, but barely. We think this is due to a couple of things. She has gotten much more active. She's pulling herself up and crawling all over the place. That probably is keeping her losing weight at a more rapid rate than she is taking in food. Also, we think that Michelle's breast milk is not giving her enough of what she needs for some reason.
The doctor has now prescribed Pediasure, which is a liquid formula that is cow's milk based but gives 50% more calories. We are in the process of weaning her off of the breast milk and onto the formula. We are pretty okay with this as it is milk based and hopefully will give her a boost. We also are getting to wean her off of Prilosec, which means that she will be on no more medicines other than a multivitamin. We also were referred to a feeding therapist to see how she is doing and how to help her improve her desire to eat and drink.
Since the appointment, Karsie has been a really good eater. She has been eating lots of food at one time and lots of different kinds. We're supposed to start getting her onto chunkier puree foods. She loves to put in the real solid foods to her mouth, but she doesn't swallow all of it. So we're back tracking a bit and getting her into eating manageable chunks in food she knows. The food therapist said Karsie is doing great and she has all the tools she needs, but she's just a bit behind, but behind at the same pace. In other words, there's not one element that is worse off than the rest; she's just eating at a 9 month or 10 month level (ish).
Today Karsie has been a bit fussy. We're hoping that it's just a one-day deal, but she acts like she's slightly under the weather. We've come to the conclusion that she's teething. She also has a fairly significant rash on her G-tube site. And to complete the trifecta of issues, we changed her mixture last night to 50% breast milk and 50% Pediasure. This means she could be having some digestion issues and gas buildup with the extra calories introduced. We hope she's feeling better for her party...
Hope we remembered everything. We'll put up another post if we did. Off to bed for us and hooray for finally getting this finished.