Thursday, October 1, 2009

Has anyone seen my umbrella?

When it rains, it pours.  

Maybe it wasn't a coincidence Noah was born on Hurricane Katrina's anniversary.

Well, I don't want to post but I will.  

I'm sad.  I'm angry.  I'm confused.  I'm furious.

Noah had some blood work done about two weeks ago.  Just routine to make sure there wasn't anything weird going on with him before we start the ketogenic diet.  No biggie, right?  Well, there were a couple of things that raised some questions.  Mainly he had a "high carnitine" result.  This could be indicative of a metabolic disorder.  They don't think that's the case but it seems if he does have a metabolic disorder, the ketogenic diet would be a BIG no-no. 

So we have to go back and do some more "digging".  Mainly retesting to see if it was a false positive and there will be a genetic work-up to check genetics.  

BIG HITCH in our seemingly simple diet plans! 

Now Metabolism is involved and they have to clear us for the diet (which is supposed to start Oct 12th).

While all of that is seriously bugging me and I'm freaked and worried about it, there is another thing.... a BIG thing for me.  

Noah came home from the hospital with a feeding tube.  I HATED it.  Something so very very unnatural about not being able to feed your baby.  We busted our tails to get rid of that thing. Seriously, MANY MANY tears over that freaking thing.  Hated it!  We did get rid of it.  In January.  It was a tough road but we've managed to keep it gone and as hard as it is to feed Noah, I wouldn't trade it for the world.

Noah has really bad reflux.  He's on two meds for it and it really doesn't help but we deal.  He spits up and I start the feed over.  Our doc wants us to have a surgery to "fix" his reflux before we start the diet.  It would keep him from ever spitting up but at the same time requires a feeding tube which goes directly in his stomach.  It's called a G-tube.  We have done everything in our power to avoid this procedure.   Now it is directly in our faces.  It stands between us and the keto diet (if we are cleared by Metabolism).  

So, do we have the surgery or not?  This is a question Todd and I don't have an answer to.  We are struggling so hard with this.  Another surgery?  Argh!  A G-tube? Over my dead body! Feeding Noah is the only "normal" thing we get to do with him.  To lose that would just break my heart?  Are the risks outweighing the benefits?  Will Noah EVER get to be just a typical kid?

We don't know.

We have a surgical consult tomorrow morning and we are having the blood work done as well.

Wish us luck!


  1. God my heart is breaking every second for you guys. I can't even say anything to make you feel better. Sooo many things thrown at you guys--I wish wish I could do something to ease your pain. I know how hard you have fought this Tricia--you can only do what is best for you and sweet Noah "Balboa". You will do what you have to and what will keep him comfortable. Many hugs and kisses (and shots-HaHaJK) to you guys Love bunches, Stacy

  2. found your left in the hill country. go figure. you want me to send it? we love ya'll and keep you in our prayers.

  3. Oh my gosh. T - I'm so sorry. It seems to just be one thing after another. If I had the bucks I could buy you break today? I agree w/ Stacy - you'll figure out what will best keep Noah as comfortable as possible.
    Love you guys,