When Bella goes to her Clinic appointments she is always looking for a "green sheet". The sheet is given when all her vitals and levels are taken. If she is growing and gaining weight, oxygen levels are good, and her BMI falls into the higher percentages, etc., she receives a green sheet! Yesterday was clinic day...she was very excited about going to the hospital..she wanted to show the nurses how she could stick out her tongue and say "awwwww" when they stick culture swabs down her throat...she wanted to tell them she was 3 now...she wanted them to wrap her big toe (and informed them "pwease don't mess up my polish!") to test her oxygen levels, she wanted the doctor to listen to her heart and lungs and look in her ears! (She had to remind the doctor to look in her ears when he had forgotten. She wanted the full treatment!! LOL) But most of all she wanted a "green sheet"! When the dietitian walked in holding a green sheet she smiled and said "That's MY green paper!!" She definitely deserved her green sheet...weight up from 33.2 lbs to 34.4 lbs, height is now 37.6 inches tall, oxygen level 99%, lungs clear, heart good, tummy soft. (And ears were great, too!) . Her BMI is 87%...We were all excited and happy! We don't have to increase her treatments (still twice a day).
Enzymes are still a confusing and complicated thing..too much and her digestive tract clogs up or stops up totally and we have to double up on Miralax..too little and her digestive tract clogs up or stops up totally and we have to double up on Miralax....it's a razor's edge we walk...so we try to keep a balance going but sometimes it is so hard to judge how much or how many to give her. She must take them to be able to absorb fats and nutrients but it's very difficult to determine the best amount. There doesn't seem to be a "standard" answer or chart...basically we are told "every child is different and what is true for her is what we must go by" and we have to go with that! She is on a very, very low dose...But as long as she continues to gain weight and we monitor her digestive tract they feel like she is doing okay but when the doctor's add a couple more comments regarding her pancreatic-insufficiency and other things, we are left with that "okay...should we do that stuff instead....do we try things another way" sort of feeling.
I know this is frustrating and worrisome for Mommy and Daddy..they want only the best for her and for her to continue to be healthy and will do whatever it takes to keep her that way and it would sure be nice if a standard enzyme-to-fat/protein/carbohydrate ratio was available.
I always feel like shouting out loud from a roof top and dancing in the streets when she is doing great...we take every bit of good news and celebrate it (and keep our fingers crossed and positive thoughts that she continues to do well). She is truly our Precious.
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| What do you do when the power goes off?? Hand your phone to a 3 yr old and let her take selfies! |
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| "Say cheese Grammy!!" |
Bella and I had a great make-up day!! Didn't find out until after-the-fact that she wasn't supposed to put on vampire make-up...but sometimes ignorance is bliss! LOL. We had a blast...hiding out...trying to scare poor PaPa! She just cracks me up sometimes...she'd find a tight little space to hide in and would tell me to hide with her...that she "saved me space ". Let's just say Grammy's bobo doesn't always fit into the spots she picks!
Her conversations are just hilarious sometimes. Right now she is a "because why??" person. So you better have the reason behind what is going on because you WILL be asked...."because why"???
