My great friend Amber, Brandon’s mom, is my inspiration for today’s post. She has walked this journey with me from the very beginning, and has been a wonderful friend and support for me all these years. I love her attitude and her perspective.

Talking about perspective, below are a few pictures of Nathan’s brain:

From ax t2 gre s
From o-ax t1, flair
From o-ax flair
From 3 pl t2 fgre s

Here are a couple of examples of a healthy brain:

When I look at these pictures it reminds me of just HOW amazing Nathan is. You don’t need to be a neuroscientist to see the abnormalities in his brain. This is a child with not only severe holoprosencephaly, he has suffered damage from hydrocephalus and bacterial meningitis. I can easily name 50 things wrong with his brain. And if I wanted to start labeling all of his diagnoses,well, it would be a long post indeed.

I am just awestruck by just how extraordinary Nathan is! He is so smart, so funny, so sweet and sensitive. He’s so curious and loves to learn. He understands SO MUCH. He eats like a champ (have I mentioned that he’s now 28.5 lbs??!!). He’s starting to say words consistently: more, elmo, agua (water), nalga, orange, mama…today he even said BELLE! He laughs at everything. He only takes 1 prescription medication. Hasn’t been hospitalized in 2.5 years, and has only had shunt surgery. He is passionate about books and loves watching people. He is the biggest love/cuddle bug in the planet!

I know he hasn’t made much progress in motor skills…but when I look at those pictures of his brain and look at the child in front of me, I feel so much gratitude! He has overcome SO MUCH to be the extraordinary little boy he is today. I used to think that I would only feel truly happy when I’d gotten Nathan to some degree of physical functionality. I was so wrong! This child gives me so much happiness, just from being!

Talking about fun, today we went shopping for newborn clothes for Belle! We went with Nathan’s grandma, great-grandma, and greatauntma and they helped us pick out a bunch of outfits. Nathan had such a great time – he looked like a little prince surrounded by his adoring entourage. He is feeling much better – the doctor saw him and said his ear infection is clearing nicely and his chest is fully healed – he’s off all breathing meds. We’re just finishing off the antibiotics. We plan on heading back to Irvine Monday morning to continue our HBOT/suit therapy adventure!


  1. JUDY LOERA says

    hi there!! my name is Judy Loera.. and i identify my self with you sooo much!! what a beautiful mission we have!! hard at times but , i couldn’t have it any other way!! I also have a little boy his name is Antonio and was diagnosed with lobar holoprosencephaly has a shunt and was born with hydrocephalus. Dr.s told me all he wouldn’t be able to do !! oh my god that was so hard! Antonio is 18 months and is starting to sit with support bare weight using a stander and holding his hands rolls around the house! starts to say mama, nana, no, ana, he knows to point to his hair and clap!! if those aren’t blessings from god then i don’t know what they are!! YESS!! faith and prayer cure. i will include nathan in my prayers! he will hold his head up! god bless you and your family!! please feel free you contact me when ever!! i have an excellent pt. with hands of an angel!!

  2. This is all totally true–motor skills are just one facet to our amazing children. They have so much to offer the world.

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