This little fighter is 8 months old! Every day is a battle for her little body, but she has come so far and is doing so well! She weighs 11 lbs. 12 oz. now and just sprouted her first tooth on the bottom. We didn't have a single E.R. visit this month (yay!), which is so fantastic for her! We were hoping she'd be bumped down to 20 hours of TPN, but she's still not eating quite enough by mouth (still around 35-40 mls per bottle) to have her TPN decreased, so we're still running her on 21 hours of TPN a day. It's hard to know for sure, but based off her weight gain, labs, etc. her doctor estimates her intestines are working at about a 50% efficiency, meaning she is only absorbing about 50% of the calories, vitamins, minerals, etc. that she is eating by mouth, so the TPN really is what is keeping her alive and thriving right now. Hopefully as her oral feeds increase, her intestines will adapt and start absorbing things better so she can be weaned off the TPN, but only time will tell.
She is rolling over both ways--tummy to back and back to tummy--and has started to really enjoy playing on the floor now that she can move around a little better. Recently she has developed restless leg syndrome--I'm sure due to some of her nutritional deficiencies--and is always kicking and rubbing her legs together like crazy, so much so that her ankles have started bleeding from all of the rubbing. She's not quite sitting on her own yet I think because her little tummy muscles are still a little weak from being cut into so much with all of her surgeries, but she's so close and will get there.
Funny story: So this awesome gal was one of Carly's favorite nurses in the NICU. Come to find out her daughter has been in Bryson's 2nd grade class all year and we had no idea until we saw each other at an end of year class awards ceremony. What's even crazier is that she only lives a few doors down from us and we had no idea! She usually worked the night shift while Carly was there, so Mike knew her a lot better than I did, but how crazy is that! Such a small world! She loved hearing about how well Carly is progressing and it was so great to talk to someone who actually "gets" all of Carly's medical issues.
These two awesome people are Carly's dietitian (left) and G.I. doctor (right). They are fabulous and work with us so closely to keep Carly healthy. Her dietitian calls me weekly to check up on Carly and to see what adjustments need to be made to her TPN to keep her growing. My degree is in dietetics, so I've really loved working with her and being able to apply my education to helping Carly. Her doctor spends so much time with us at each monthly appointment and genuinely shows he cares about her development and progress. They have been so great!
Lilly loves to help me prep Carly's TPN kits. I put all of the supplies needed to unhook her and hook her back up in little pre-prepared baggies so that all of her supplies are prepped and ready to go when we need them.
Adding a child to our family with a rare chronic illness and so many special needs has been a pretty overwhelming adjustment for our family. Our lives are VERY different than they were before adopting Carly. We've had to make a lot of sacrifices and have had to give up a lot of things that we love doing. The things stated in this article are SO TRUE about how life changes and the feelings that come with a special needs child. It's the hardest thing we've ever had to do, but at the same time has been the absolute most rewarding experience of our lives. She is teaching us things we could have learned in no other way. She is worth every sacrifice, every messy blow out, every E.R. visit, every hour lost of sleep, every sterile dressing change, every doctor visit, every dose of supplements, every homecare pharmacy phone consult, every laundry load of poop covered clothes & blankets, every exhausting TPN hook-up, every homecare nurse visit, every homecare delivery, etc. This little angel is worth EVERY piece of it! We feel blessed, not burdened by Carly and are so grateful to everyone in our lives who have been there to support us in this journey. Thank you for loving her and supporting us. We couldn't be doing this without you!
Favorite quote this week:
"Difficulties allow us to change for the better."
-Thomas S. Monson
Life rules!
