Sunday, October 11, 2009

Little Update


We are waiting for results to come back from the lab.  Guess it takes a while since they are doing some special ninja genetic work up to further investigate the potential metabolic disorder that is suspect.  

We met with the surgeon.  I really liked him.  He assured me if we don't use the G-tube we can just pull it and let the hole close up (kind of like an earring hole).  Weird!  But love that it's not a permanent fixture unless ABSOLUTELY necessary.  I like when they fool me into thinking I have some say in the whole ordeal.  Do they offer a special class in med school for that? 

I've emailed the brain surgeon in Michigan (Dr Rockstar).  He PROMPTLY emailed me back saying he'd be happy to see Noah and to run some presurgical tests.  He left an email and a name of a woman who will work with us to set everything up.  Hopefully this delay in the keto diet is a God send and will give us time to do the tests before we start (since we can't do them while on the diet).  

I'm trying my best to just let things happen without trying to "force" them.  I have to remind myself that things happen for a reason and happen just like they are supposed to (whether I like it or not!).  

So, that's about all.  We've started Phenobarbital too.  Hopefully it'll help alleviate some of these awful seizures until we can get a more definitive treatment for our little guy.

Go Patriots!  Since Noah will be "Tom Brady-cardia" for Halloween this year.  Love it! 

We do follow some blogs. You can check them out on the left side of our page.  Very strong people and their little ones who are on this IS journey too.  Please keep Trevor and his family in your prayers.  He just had brain surgery to remove his seizure monster.  And poor little Kendall is back in the hospital.  Please pray she gets better soon.  And as always, Noah can always use some "shout-outs" to the Big Guy.  Thanks and God Bless!


  1. You are such an inspiration to those of with 'normal' lives. I love you all! On a more important note - Tom Brady-cardia?!? I LOVE IT! (except for the whole go Patriots thing)


  2. You know I love you Tricia, and I will send lots of love and prayers, but I to draw the line on the Patriots/Broncos. You will not end out winning streak! Love you so. Kiss that big boy for me (both of them)

  3. Haha! I could not care less about the whole football thing!!
    But, I love all of the Sweitzers and if the sports camaraderie gives you a little lift....woohooo! I too think the Bronco's socks were ridiculous. Not that I watched the game of course (I was watching To Kill A Mockingbird ;) but I saw it on the news...and they were hideous. hee hee.

  4. Trisha-

    we think about you all the time, and I love the Go Patriots thing-even though Denver pulled it off. I somewhat understand the horror; Bennett went through many doctors and things were very shakey for awhile. I do know all about infantile spasms and the mytochondira disorder-seizures are maddening! Continue to get your feelings out-sharing the story and the emotions is therapeutic. I just always told myself that this too shall pass-I know it is difficult to be patient with life's plan-but you are right in saying that things do happen for a reason. It has been through the difficult situations in my life that I have learned and grown the most--you all are in my thoughts and prayers everyday. Each sunrise and sunset is a gift to us all!!!

  5. I am so glad to have gotten ahold of this blog... I am glad to be able to keep up with you 3. You three are such an inspiration and i admire your strenth!!
    love you guys!
    love jen
    Go Chargers!