One year ago we were in the throes of the beginning of feeding tubes and an elemental diet.
One year ago I was out of my mind with the crazy new schedules, getting our supplies delivered, new medications, etc.
One year ago an elemental diet seemed big and scary. A feeding tube? No way.
I wondered if Maya was ever going to be able to eat real food again.
The beginning of our elemental journal was difficult, not because it’s difficult in and of itself but because I didn’t know what on earth we were getting into or how to keep up with it all.
Now, with a year behind us my hindsight is kicking into gear.
Now, we’re happily getting used to a g-tube whose button we got to see for the first time today. The g-tube, though it required surgery, was no big thing. Maya was fabulous and totally excited to get the ng-tube off her sweet face. The stares were getting to her and I think she was very ready to have me stop sticking the tube down her nose at least once a month.
Today Maya is happy and healthy. Her weight is great, she’s actually a normal size for a seven-year old girl though she’s eaten very little regular food over the last year.
What I wish I could have seen at the beginning
The elemental was the very best choice for Maya. With it, her reflux stopped, she didn’t get sick, she had plenty of energy to keep up with her brothers (much of the time even more energy) and she was able to get truly full for the first time in her life. The nutrition she was putting in her body was no longer hurting her. That right there is an amazing gift.
Another amazing gift has been non food celebrations. Initially that feels like a no-no and like a crazy prospect but I’m here to tell you it’s fantastic. We’ve celebrated all the holidays within a year without food being the main focus. It’s been freeing and wonderful.
If you are looking down the barrel of an elemental diet or know someone who is please share this post with them.
Coming from the mom of an elemental, ng-tube, and now g-tube rock star of a girlie, it’s not the end of the world. It’s an exciting beginning to a world of health you more than likely didn’t know existed for your kiddo.