Life with holoprosencephaly
This is the last you’ll hear from me for the next week!
Ms Belle and I are OFF to Brazil tomorrow morning and we will be incommunicado for 7 days. 7 whole days without email, phone, or any kind of technology. Can you imagine??!!!
So, my dear friends, wish me luck!!! And pray for my little monkey-man who will be hanging out with his daddy and grandma!
(This video was taken after grandma caught Belle as she was jumping out of her crib…check out the adorable hat!!!)
This is the formula we’ve been giving to Nathan that has helped him gain weight:
14 ounces of calcium fortified almond milk
2 ounces of unsweetened coconut milk (in a can)
1 scoop metagenics ultra-care 4 kids
Typically you need a practitioner ID to buy ultra-care from metagenics, but I did a quick search and found several vendors online:
http://www.naturalhealingstore.com/item141.htm
http://www.naturalhealthyconcepts.com/ultracare-for-kids-vanilla-p-vitamins-children.html
* I heard back from Nathan’s doctor, she mentioned that she was defensive because she’d just treated a child whose liver had been shot from over-use of supplements. She said she IS quite knowledgeable of herbal supplements and would like to be informed of what we’re giving Nathan so she can offer us her feedback. I am SO HAPPY that she was willing to listen and that we still have the best doctor ever on Nathan’s team!
* The CCS doctor that I spoke with DID approve Nathan’s hinged DAFO’s. After I explained to him all of the benefits of being upright and moving his own limbs, he felt that was a good enough reason to approve both the DAFOs and the SWASH. He seemed like a decent guy and even though he admitted he wasn’t knowledgeable, he seemed willing to listen and learn.
* We saw Dr. Kenny today and she’s really pleased with how well he’s doing – she commented on how much he’s filled out. Thank you Ultracare for Kids and Kelly Dorfman!