Due to some major hurdles in what is best for Jacob's care, we are now going to take him to the EoE clinic in San Diego. Not sure what is waiting for us there but hopefully it'll be positive and Jacob can continue to get better.
Since going elemental, his personality has changed dramatically. Gone is the moody, grumpy, angry boy who tested my patience to the bitter end. Now we have our little guy who is all his dad's goofy with a splash of my sarcasm. Love hearing him giggle. And secretly love hearing him logically harass his sister. The doubts I had in the beginning of taking him off food are gone. It is obvious that he was in so much pain and his body couldn't handle the bombardment of toxins that it perceived was invading his little body.
My day is now dictated on when his next feed is and how long it will take. There's the 10 minutes of prep, 45-60 minutes of the actual feed, and then the 10 minute unhooking, cleaning, and clearing afterwards. Not an easy task. And try doing it in the car when that stupid pump keeps beeping while your driving. Trying to keep the car going in a straight line while reaching for the backpack, unzipping and looking for the reason why the pump is beeping! Talk about dangerous driving habits. But in the end, it's worth it to see him happy. Missing food but happy.
I realized today that I would more than likely would have started nursing school next month. My year off to take care of Jacob has turned into 2 faster than I can I blink. Sure, I get to play nurse with Jacob and Lili. But it's not the same when it's your own child. When I play the role of nurse but without the income or fellowship. Without the inner satisfaction of it. I'll be 35 soon and my pipe dream (as my brother called it once) of being a nurse and moving to London for a year, I've realized, is just that. A pipe dream. Was this the life I was meant to live? I'm not so sure. But it is the life I have.
I love my kids. I will do anything for them. I just wish I could do anything for myself.
Jacob will have his next scope in mid-September. Lili will be seeing new doctors for her GP. And we will move forward.