I don't have any updates on Sebastian yet, but while we're waiting, I thought I'd lighten up the subject and write about someth...

Healthy Desserts

I don't have any updates on Sebastian yet, but while we're waiting, I thought I'd lighten up the subject and write about something completely different, like food.

Now every parent is different when it comes to giving their kids sweets. Sebastian turns into a crazy little brat if he gets a lot of refined sugar, so we try to keep it to a minimum. I have received an amazing amount of criticism for this, with comments like, "your child needs to come to my house so he can have REAL sweets." I am not that mom that is criticizing parents for giving their kids lots of sugar...okay, at least not to their face. If your kid is always running around with a lollipop in their mouth and you're whining to me about the kid being a monster and having cavities, I'm not gonna lie, I'm laughing at you in my head. Still it catches me off guard to get criticism for trying to teach my child healthy habits. But oh well, as we know, parents are just mean to each other. ;-)

So I thought I'd share some of my "fake" sweets that I like to make. I figured if you're going to eat a bunch of sugar, it can at least come with some nutritional value. I just made this one the other night and Sebastian gobbled some up like it was a real brownie. The next night I gave it to him with a scoop of soy ice cream which totally ruined it, he ate all the ice cream and left the brownie. I can't compete with kid crack.

Ohh one more thing, in case you don't know, I had to look it up when I first bought the stuff. There is a difference between cacao powder and cocoa powder. Cacao powder is raw chocolate with nothing added to it, no sugar, no milk, so it's actually quite nutritious for you. You can find it at New Seasons or Whole Foods.

Frosted brownie (from the iPhone app Do Eat Raw)

coconut shredded A handful
dates, pitted 2/3 cup
agave nectar 1 tablespoon
cacao powder 2/3 cup
coconut oil 2 tablespoons
Himalayan salt A pinch
cashews 1 cup

Description :
In a food processor or a blender, process the cashews until finely ground. Add the dates, 1/2 cup of cacao powder, salt and process until the dough starts sticking together. (Mine wasn't very sticky at this point so I added a few more dates and a little bit of coconut oil and processed again.) Press the brownie mixture firmly into a pan and place in the freezer for about an hour. Just before taking it out of the freezer, make the frosting by blending together the coconut oil, the agave and the remaining cacao powder (about 2-3 tbps) until smooth. Release the brownie onto a serving plate and spread on the frosting. Top with coconut flakes and serve. (I keep the leftovers in a covered container in the freezer.)

Another favorite of ours is one we made up. Sebastian named it.

Chocolate Juice

1 cup unsweetened soy milk
2 tbps cacao powder
1 banana
Handful of frozen blueberries

Blend until smooth and enjoy!


Last week we got word that the insurance company approved the genetic testing for Sebastian. Of course I imagine at least some of it will en...

My Tough Little Man

Last week we got word that the insurance company approved the genetic testing for Sebastian. Of course I imagine at least some of it will end up going towards our deductible, so we'll probably have to pay. But at least they approved it which means if he needs further tests done relating to this after we've met the deductible, then they should be covered, so this was good news indeed! The geneticists office called right away and let us know it was approved and that we could bring Sebastian in anytime for the test.

Last time Sebastian got his blood drawn he was about a year old and daddy took him to do it since I was afraid I'd be a nervous wreck. It was for a large blood panel where they were testing him for a variety of things (thyroid, allergies, blood count, etc.) so they needed several vials of blood. Unfortunately it was at a regular LabCorp location where they did not have much experience on babies. It took them a couple of tries and poor Brian had to hold Sebastian down while he screamed and cried. I was very sad for him and thankful I wasn't there since I would not have handled that well.

This time, I offered to go with them but knew I would definitely be a nervous wreck after hearing those stories, and I'd hate for my fears to make Sebastian scared. So nice, calm Brian bravely offered to take him by himself again. But apparently I had nothing to fear. OHSU has phlembotomists with lots of experience with children so they have this down. Granted Sebastian is 2 years older than last time and they were drawing quite a bit less blood, but still it sounds like they knew what they were doing. They did the blood draw super fast, Sebastian flinched but didn't cry, and then they gave him 2 new books to take home. (Distraction is often a magic cure for small children.) Sebastian has talked about the experience several times with Brian and I without any sadness or fear. He says it hurt but referred to it this morning as "the doctor scratched my arm". I asked him if he cried and he says "nooo" with a giggle like that's a funny idea. What a tough little man we have on our hands. I'm so proud of him.

Results can take about a month. So now we wait...


Last Friday we took Sebastian to his first appointment with a geneticist at OHSU (Oregon Health & Science University). First I have to s...

Geneticists Are Smart

Last Friday we took Sebastian to his first appointment with a geneticist at OHSU (Oregon Health & Science University). First I have to say that this place is pretty amazing. My first thought when I heard it was a university was oh great. At UNR if you went to the student health clinic, you had to wait all day to see a doctor who was still in training. They'd awkwardly examine you and then say "yeah I'm not sure what's wrong with you." After looking it up and talking to people in the area, I learned that OHSU is nothing close to that, but is actually a very popular research hospital with many of the areas best doctors. It turned out that our experience matched what we heard. It was a very good appointment and we were dazzled by the geneticist and how much she knew about this particular disorder (without reading off any paper like the neurologist had to). They also had a genetic counselor in the room who's main purpose seemed to be to help translate many of the terms the geneticist said that we did not know. They were both very nice ladies who were of course smitten with Sebastian.

The geneticist confirmed that Sebastian meets the criteria for having Neurofibromatosis. With his symptoms, there's a 90% chance he has it. Thankfully that was the worst of the news. The rest was lots of good news.
  1. They agreed we need to do the DNA test to be sure. This test will not only test for NF-1 (Neurofibromatosis Type 1), but also SPRED-1 (also called Legius syndrome) which is a condition that has many of the same symptoms, minus the tumor growth. They are discovering more and more people with this one all the time, so here's hoping!
  2. They are good at getting insurance companies to cover this test. They are submitting all of the necessary paperwork and we should hear back in about 2 weeks hopefully.
  3. They have phlebotomists (people that draw your blood, a.k.a. vampires ;-)) at OHSU that are very good with children and know how to make the blood draw experience not traumatic.
  4. Even if his test does come back positive for NF-1, the geneticist does NOT recommend or require regular MRIs unless he develops other symptoms. This is the opposite of the Neurologist who wanted to order his MRI right away. We were very pleased to hear this. First she will recommend an eye exam, where they will be able to see if he has any tumors on his optic nerve (one of the symptoms of the disorder). If they do see something, then he will need to get an MRI. But at least the eye exam will be a lot less invasive (and less expensive) than an MRI.
  5. They agreed he is not showing any symptoms of learning disorders or tumors.
  6. Of people with NF-1, only about 15% experience tumor growth, and of those people, only a small percentage actually require surgery. So it sounds very likely that he could go his whole life without ever actually having a problem from this disorder.

The only other piece of bad news was, once they do the DNA test, it takes an entire month to get results back. But still, at least we should know something for sure in the next couple of months. In the meantime, we will stay positive and off of google. :-)