Nora’s weight has been on quite the roller coaster ride the past couple of weeks. She’s come very close to going back on TPN but then improves at the last minute giving us hope that she’ll keep going up on her own. Her loose stools have continued to be a problem off and on ever since she had a tummy bug a few weeks ago. They were really loose and frequent this week and she dropped down below 15lbs for a couple of days. Not good. 🙁 Thankfully she’s been hanging around 15 and 1/2 pounds for the past few days since her poopies have miraculously gotten better than they’ve been in a long time. Her progress this weekend and Monday’s labs will determine if she’ll go back on TPN this coming week. We are very hopeful that she can pull it off now that she’s not pooping everything out and we are taking a new approach to her diet.
We’ve been looking back at her daily logs and realized that we started adding oil to her diet shortly after her stomach episode and then added digestive enzymes to her diet soon after that. Her stools thickened at first but only for a few days. So on Thursday we cut everything out of her diet again and had her on Elecare and Pedialyte only. Her poops calmed down and now we’re starting back with the basics. She’s eating her rice again and had some avocado today and didn’t poop it out like she had been last week so that’s a very good sign that her system is back on track, now if we can just keep it that way. We wont be adding the oil or enzymes back into her diet but instead are going to try a fat free diet of mostly vegetables. Thanks to a new short bowel parent we have recently been talking to we are feeling hopeful that a fat free diet will help with her stools. And better stools will hopefully lead to better weight gain. This child is now almost 3 years old and he was in the same spot where Nora is at the age of 1. He wasn’t absorbing fats so they were trying the same as we’ve been doing, adding easily digestible oils and fats with the same results, more loose stools and losing weight. So their doctor suggested to go with what can be absorbed instead of fighting against what his body doesn’t want to do. This was very successful for him so we are hoping that Nora will have the same response.
On the non-medical front Nora’s grandmother NeeNee, my mom (Sarah), got married last weekend. CONGRATULATIONS NeeNee and Papaw Don!! My sister and her family came down from Kentucky for the wedding and Nora finally got to meet her only first cousin Marin. We had been very anxious to get them together and of course they were as cute as we could have ever imagined. 🙂 Nora also got to meet her cousin Sophia who we were super excited to meet. Nora and Marin were both flower girls in NeeNee’s wedding. I don’t have any wedding pictures yet, since I was in the wedding myself I didn’t have the camera to paparazzi the girls with but here are some of them playing very sweetly together.
Marin was a very good teacher at showing Nora how to be a good mommy to her baby doll. 🙂
What sweet sharing artists!
WE LOVE YOU COUSIN MARIN AND CAN’T WAIT TO SEE YOU AGAIN!
It’s good to hear Nora’s tummy is calming back down and I hope the fat free diet works for her!
It was so good to see you guys again and it was wonderful to finally get our sweet girls together. We’ve been looking at the pictures of the two little mama’s and budding artists a lot since we’ve been home. Marin still talks about Nora constantly and how she misses her and wishes she could see Nora everyday! I’m glad they bonded so well on their initial meeting and we can’t wait to do it agian soon!
We love you!
Awesome. Good call on the diet. I keep saying you guys don’t give yourself enough credit.