Friday, May 17, 2013


Just thought this was cute- both passed out. Rowan with a bottle tucked in has arm.

Steve and Rowan will run the Fargo Half Marathon tomorrow... here's hoping for great weather and a good race for them both!

Wednesday, May 15, 2013

Latest trip to Gillette Children's

I haven't really updated this properly since Rowan's last visit to Gillette Children's Hospital in St. Paul.

Here's where we're at with things:
  1. They conducted an EEG that lasted around two and a half hours to get a baseline... They wanted to see where Row is at currently with seizures. Results showed a definite decrease in amps overall from where he previously was (700) down to 200. So that is good. He's having spikes, which show his brain wants to seizure, but they didn't record any active seizure activity. He showed definite loss in brain activity from his Infantile Spasms, and brain activity is assuredly not normal, but all in all, good results.

  2. We are lowering his phenobarbital slowly. Dr. isn't certain it was ever really doing anything, so we're beginning the wean on his morning doses.
  3. Rowan is actively being cared for by their Keto team and is now eating about 4 meals per day, including Greek yogurt meals, cheesecake, more avocado, peanut butter, and bratwursts. I'm happy he gets to experience new and exciting meals.  We've also adjusted his KetoCal mixes down from 67 grams per day to 41 with no added Carbs. Not adding carbs into his formula enables us to add more into his meals.
  4. VNS is still not turned on. 
  5. It appears we will transfer his care to Gillette until Fargo gets a new neuro in July... 

 On another note, and not sure if you've heard, but Lily is growing up.  She tells us this often and stretches her body 'taller' while she lets us know she's a big girl.

Because of her new status, she's gotten a big girl bicycle!  Here she is, but I'll post video soon. She's getting the hang quite nicely!

Monday, May 6, 2013

Turns out going green is difficult.

The past couple of weeks have proven challenging to my Green mission. I can now see that these lifestyle changes will take much time to adapt to and that we'll all have to create new habits.

  1. I failed miserably at traveling in any green way at all. I didn't plan well and we ended up buying lots of items at gas stations. My car looked like a garbage pit; plastic bottles, wrappers, etc. I was disappointed about that.
  2. I did average last week during a 'test' shopping trip where I took some linen bags along with my Envirosax to use for produce. I did not have any jars with for deli meats and cheeses- but I did ask the worker to place two different kinds of meats in the same bag. The request did not go over well. I eventually convinced  her, but she quit making eye-contact after that, so I suspect she was irritated.  I stuck to the outer areas of the store and also picked up some bulk spices, oatmeal, and trail mix. All in bags, so I need to do better. 
  3. I am packing actual silverware and cloth napkins for myself and Lily- She likes having her 'mat' for lunches at school.
  4. I've done pretty darned good job at using up left-over foods and foods that will go to waste. I roasted some tomatoes in the oven with some olive oil and sea salt, and they were delicious! I put them in a salad and ate them strait from a bowl.
  5. I'm doing well at refusing items we don't need in the house but need to be better at ridding the house of things we do not use or need. Our local thrift stores have gotten quite a bit, but will surely get more!
     I decided to do worm composting rather than purchasing the unit I really wanted. After researching, it seems like a better plan for our house. And Steve is working up this whole Aeroponic growing system, so perhaps some of my compost can be used in the plants we grow with soil in the tent.

Oh! I did end up making some body butter I am really excited about- I used this recipe. I added in some Eucalyptus to the mix at the very end and it's really a lovely smell. I use it on the kids and Steve and I love it. It's super great for Rowan, too, because we have to watch that he doesn't get any carbohydrates through shampoos and lotions.

 This recipe made one large LeParfait container and one small one, (the one pictured) which I've brought to work.

It is thick and creamy and is just wonderful. I would be surprised if I ever bought lotion again!