Tuesday, December 13, 2011

still going strong

Ben is STILL doing good - in fact, he's doing great!  We are seeing more and more of the real Ben everyday.  We just couldn't be happier!

Meal times are still touchy.  He loves breakfast - the macademia nut pancakes are a huge hit.  He also still enjoys the KetoCal pizza.  But dinner is another story.  He'll get excited about his dinner choice, but then when it's time to sit down to eat it he cries.  It's like it overwhelms him.  He eventually eats it, but it's a challenge. 

It's funny how food has taken on a new role in our home.  It used to be that if we had a great day, there was food to celebrate.  If we had a rough day, then we'd order pizza or what not.  Even holidays were filled with sweet treats and goodies.  But now, food is for nourishment.  We try to eat with Ben, but it's still hard.  He wants what we are eating - even if it's something he doesn't like.  His portions are so small that he is almost always done before us and then is upset that he can't have more.  We are learning new ways to eat just as much as he is and learning new ways to celebrate - without food.  :)

We have to test the level of ketones in his urine each day.  (I have a cute little story to share, but I hope it doesn't sound too crude - just bear with me.)  The most accurate way to test his urine is to collect a sample in a small cup.  Then we insert the test strip into the cup and compare the color to determine the level of his ketones.  Ben has wanted to become involved in the process, so we have included him a bit.  Tonight I asked him to use the restroom in the cup and told him that I'd be in there in a minute to help him out.  A minute or two later Leeon asked him if he had dumped it already back into the toilet and he said yes.  I reminded him that he was suppossed to wait for me and he said, "I already measured it!"  We were both shocked, but he did!  The test strip was already discarded as well.  We just thought it was cute how he said it and that he did it by himself! I guess some things are becoming second nature for him too.

Tonight we are thanking God that:
  • he has been seizure free for 7 days now!  woo hoo!!!!!!
  • his sense of humor is returning
  • he seems to have more energy
We are praying that:
  • dinner will go better
  • I will be able to experiment over the Christmas break to find things he'll like
  • his doctor appointment on Monday will give us more insight
  • we will be strengthened

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