Saturday, April 7, 2012
Max's energy levels have come back up. Today he woke up at 6:30 AM, fun times! He has not napped in the last two days, and today he was really tested by a long drive after a hike. Not only was he awake, but he played with Caroline the whole way home in the car. We will know for sure in a week and a half, when he gets his levels tested again, but I am pretty confident that he is back to his old high ketone self!
Today we had a fun family day. We were invited to a very unique birthday party in Boulder. We got to see a duo of environmental singer/performers, named Jeff and Page. The kids loved it and the grownups were cracking up with songs like, The Opera of Giardia. The party was held at the Colorado Chautauqua Landmark. More specifically, it was held right out side the very performance hall where I heard Ray sing almost 11 years ago....and we were married less than a year after that. He was a good singer :)
After the party we headed out on a family hike. The trails in that area are wide and great for kids, even if at times they are a bit steep, the width of the trail makes it easier on them.
I was not sure how hiking would go with out my sister's dog, Spicy, along with us. Max is a creature of habit and we have found that just one time can make a habit! We bought him a trekking pole to help stabilize him, of course he felt like Yoda, and he often would stop and use it as a pretend gun. The poles came in a set of two, so we gave one to Caroline to see how they each managed with just one. If Max needs two poles on more difficult terrain, we will look into getting another one for Caroline and letting him use both poles. Although the poles were novel and fun for the kids, I REALLY missed Spicy. Max had a lot of trouble focusing with out her and he also was very slow. Spicy was a great pace setter on out last hike. I think I will see if my sister is available to join us on most future hikes, Spicy really made that much of a difference.
My father wanted to the encourage the kids with a gift of hiking backpacks. They got to use them today for the first time. To say that they were thrilled is an understatement! There is something about having your own gear that makes a child feel so included. They are also like their mother, accessories, especially in bag form, just make life a little brighter. I really loved watching them use the packs, I also enjoyed not having to carry their water and jackets. I have a feeling these packs will be used on many an adventure in both natural and urban settings.
As the kids sat on the rock pictured above, I asked them their thoughts on their second hike. Caroline went on and on about the benefits of water and how cool her pack was. Max simply stated he enjoyed seeing all the buildings. (Maybe he was talking about were the party was?) Sigh...really!? Buddy, we are hiking, hiking! After my response he added, well there was a neat house too. I promise to continue my mission of introducing Max to the great wide world of the outdoors. It is baby steps right now, but hopefully something will click soon. Never the less he now has the energy again to get out there and see it, and see it we will!
Wednesday, April 4, 2012
|Off topic, but we have the best luck at yard sales! Check out Storm Trooper Max!|
|My mom took this picture because we thought he was so cute...none of us thought about his low energy.|
Ray and I learned a big lesson this week, we can never be too careful about the fuel for Max's brain. The Modified Atkins diet has become so second nature to us, that we became lazy with it. Max's meal choices have little variety, meaning he basically eats the same thing every single day. With out realizing it or talking about it, we stopped counting Max's carbs each day. It sounds crazy as I write this out, how could we have done this?! What kind of parents are we? How did we go from a dedicated note book, weighing most of his food and reading the back of every label, to just winging it?
I guess we just got too familiar with it and took Max's recent gains in health and energy for granted. I had noticed he was napping more (like his ability to fall asleep despite being a head to toe Storm Trooper), but I had not really thought much of it since we are doing so many activities that could indeed tire him. Thankfully, when on a diet like this, you have to be seen by doctors every three months for the first two years, then twice a year after that....my guess is it is for this very reason. Mistakes can be made!
Yesterday we got up bright and early, well not so bright, we had to drive through a snow storm, but we arrived at Children's hospital more or less on time. Max had his normal labs on order. However, my usually stoic boy had to be chased down and held down screaming for the blood draw. I made a mental note of it, but figured his behavior was due to fasting for the blood draw. However, he has had to fast before and he has never acted this way. Max is the king of blood draws. Next we headed up to meet with the neurology nurse and dietitian. The nurse had the lab results show up on her computer half way through our visit and her face fell. His blood ketone levels had dropped, a lot. This is a very big deal. Max's ketone levels = the amount of fuel his brain has to use. My stomach knotted up, I knew right away. It all made sense, the napping and the reaction to the blood draw. My sweet boy was low on fuel...and it was my fault. Mother guilt takes on a whole new level when your child has a medical condition of which you are in charge.
The nurse and dietitian were very kind about it, but they requested a blood draw in two weeks to check the blood ketone level again. I called Ray and told him about it before I was even out of the hospital. Then later at home, I watched Max take a two hour nap, that I had to wake him up from finally.
Ray and I went over all the food when he came home. Our negligence in recording his carbs was not the primary problem. The culprit, we believe, was changing food brands. The nuts from Costco have a different carb count than the Sam's club ones. The ham we realized, differed quite a bit as well. One package even said zero grams, which we know is not possible, zero can mean less than 1 gram, and less than 1 can easily add up in a hurry. So I reweighed all the food and broke out a Sharpie marker and wrote on every package. I got out a new notebook and we committed ourselves to turning this ketone dip around.
Today has been all about the three Bs, Brie, Bacon and Butter. Hopefully we will have his ketones up in no time and we will have an energetic and mood stable Storm Trooper.
I really, really, really hate having to learn things the hard way! This will be a lesson not soon forgotten.