Food - Day 3

My nephew. I have this nephew who's adorable. Well really that could be any of them. But today we're talking about Happy (his internet pseudo-name from his mom).

Happy is three years old and has EE. To really read more about him and find out all of the specifics as well as to see more pictures of the seriously cute and adorable child he is click here. Basically he has multiple food allergies. For him his list of foods he can eat is much shorter than the foods he cannot. I believe we're up to 6... sugar, watermelon, sweet potatoes, grapes, apples, and celery. (really, to see him eat celery is amazing! He eats it like a corn on the cob-straight across length-wise. ADORABLE!!!)

Can you imagine only eating off of that list? And at 3? It blows my mind. Every meal time is a struggle. Because those six foods don't sustain him he has to take a specialized formula. You can drink it directly but from what we hear, it's pretty gross. So he used to drink it through a tube in his nose (an ng tube).

While it made him actually get the nutrients and allowed him to grow it really made things hard for him. People can be rude and seeing this tube coming out of his nose led to many unusual comments. So they chose to get a g-tube for him. The g-tube goes directly from the outside of his abdomen into his stomach. His parents didn't just decide to do this because of the strange (read: rude) comments from people, but now he can also swim and do anything that other kids can.

Still, everything isn't perfect. Getting the tube plugged in just right can be tricky. I know, I've tried it before. We have babysat him a few times and getting him plugged in or unplugged always makes me nervous. What if I pull too hard and it comes out? What if I don't do it correctly and somehow mess it up big time? What if I indirectly hurt him? I hate to be putting him in pain.

And don't even get me started on the pump. Or really I should say don't even get his parents started on talking about the pump. It can be quite finicky. Yuck! Not only are his parents dealing with his allergies and still trying to lead a normal life, they have to deal with coordinating hospitals, doctors, and insurance!

Judging from their experience and my own I can attest to how frustrating it can be to try and deal with the medical profession. There are instances where we really need their help and input and yet it seems like we are talking to the wall for all the good it does us. Often times we feel left out and on our own trying to deal with the issues at hand.

But I have to say that I am so grateful for all the medical knowledge that we have today. Hearing from my sister about all the success cases for children with EE I am just so relieved that we do know what we can do for them. I am grateful for Happy's formula which enables him to thrive, even if a month's worth costs more than most people's monthly mortgage payment.

I love Happy soo much and I just wish the EE would go away. That just seems to be the only answer I've got, which really isn't an answer. But it doesn't work like that and so we just have to keep muddling through.