These are 4 words I never thought would have to be in my vocabulary.This weekend, after our '48 hour' wait for test results had turned into 5 days, we got some kind of an answer as to what is going on with Avery. Unfortunately, it isn't the complete answer, but it is a huge step in the right direction, in figuring our girl out.
what do those big words mean? Basically, it means that my sweet girl
will have to be on a special diet for the rest of her life. Her tiny
body is not able to digest or handle Sucrase or Maltase, which are both
very common sugars. It is in bread, seasonings, grains, fruit, table
sugars, starches...so none of those things will be allowed in Avery's
diet. She will be on a very strict, special diet just for her body. I
know what you are thinking...what CAN she eat? Well, not much, to be
honest, and we will figure all of it out as we come to it.
the plan for now is to get a G-tube inserted, to see if her new special
diet will stop her stomach from swelling up. As of right now, she is
unable to digest even 5mls of milk through her NG tube (the tube in her
nose) so the G-tube (the tube that will be surgically placed in her
stomach) is the next step. If she can not tolerate that, she will get a
permanent central line placed in her chest, and she will remain on IV
fluids and TPN, to get the nutrients and calories that she needs to grow
and thrive. If all goes according to plan (which lets face it, it never
does) she could be home in about 3-4 weeks! It will be such a joy to
have all of my babies under one roof.
Her doctor is very intrigued
by her. He said she is such complex, rare case, and he had never seen
anyone like her before. We always knew she was special.