Katanya huge hugs to you. I can hear the worry in your post and I can sense your amazingly deep love and concern for your little boy. I hope you can find some comfort in the fact that you are doing everything you can to nourish him. You're seeking a broad range of medical opinions and you're making informed decisions as a result. In a nutshell, you are doing a FABULOUS job as a parent... there's most probably not too much else you can do. Self-doubt every now and then is part and parcel of having a child who has an illness or disability. In some ways it's probably a built-in reality check-er so we can stop and take stock of what we're actually doing and affirm the decisions we've made concerning various treatments. It's only when we let it entangle us and paralyse us that it becomes damaging to us and those we love most.

And if you do take Felix down to the beach to let him enjoy the sand and ocean, don't feel guilty about his physique. People should just butt out. My son has a slightly flared rib cage from his lungs fighting to work when he was a baby, and he sports several very visible ribs and two very large scars. Some people do stare at him... those who notice and ask about his scars I tell them about his amazing story. Those who notice and just stare... well that's their problem.

Why should my son miss out on some of life's best experiences like the beach just because some people are quick to judge?

Sorry for rambling on (and on and on) but I just wanted to encourage you Katanya, and you other ladies who may be facing lower weight issues.