Yesterday Liz the dietitian from the Cystic Fibrosis Center called to give us a report on Lainey's stool sample from last week.....Results: Not Good! She has a lot of fat in her stool, thus the reason she is not gaining adequate weight...not to mention the reason for the stench that lingers in our house! I am going to begin working on an invention that successfully contains a CF baby diaper (meaning the diapers can't be smelled from our house to the neighbors)!! It is really important that Lainey absorbs as much fat as possible so that she gains weight. It is also assumed that if the amount of fat in the stool is elevated that she must also be losing important vitamins, minerals, and other things from her food. This news was a bummer, since last month's stool sample was very close to normal!
With this news, Liz recommend adding another enzyme to the three she already takes before each meal! Now Lainey is taking 4 Ultrase enzymes before she eats a meal! Although this is on the high end for a child of her age and weight, we are hoping this does the trick! If this is not the solution, we will try another brand of enzyme! In case you are unsure of what the enzymes are designed to do, if they are working properly they should help take the place of natural pancreatic enzymes. They help breakdown food and assist in absorption of fat, vitamins, minerals, and other important things found in food. Since the mucus within Lainey's body is very thick as a result of Cystic Fibrosis, her pancreas is plugged. As a result of a plugged pancreas, Lainey's natural pancreatic enzymes are not able to be released into the stomach to aid in breaking down her food. Now we are working on finding out exactly how many enzymes she needs to correctly and effectively breakdown her food! What a chore this has proven to be! We have been working on this since she first ate when she was in the NICU at Egleston! I am pretty sure it will be something we will always have to work on....until there is a cure for Cystic Fibrosis! BLAH....but we will do ANYTHING it takes to make sure Lainey is healthy, happy, comfortable, and everything else she needs to fulfill her dreams!
Thank you for keeping us in your prayers! We are blessed to have so many people keeping us in their thoughts and prayers! Have a Merry Christmas! Look back tomorrow for pictures of the Smithson Family Christmas morning!
nine years of letting go
3 weeks ago