Decisions ... Decisions

One of the hardest things about being a parent of a child who isn't ..... shoot.. who has special needs is the decision making process.  You see - with a "normal" child, you make a misstep and you end up with a kid who doesn't sleep through the night until they are 3 or you end up with a kid who has bad manners, etc.  In the grand scheme of things - not really that big of a deal. With Alexander - decisions take on a life of their own. Now... I know many of the people reading this have children with WHS also - so don't be too upset at me for sharing these possible outcomes.  Really, my decisions now all come down to Alexander's nutritional needs. Ok... here are my dilemmas
We already have a feeding tube.  It was not our informed decision - it was made at the time of the diagnosis because we were told Alexander would never eat.  So.... do we use it?

**The benefits of using it are - we can definitely give Alexander more food through the tube than we can orally. It is definitely easier to tube a bottle than it is to coax him to eat 2-3 oz... sometimes only 1 oz.  He might gain weight faster if we use the tube.  He might develop faster if we use the tube.  He might not be getting enough nutrition without the tube.  He might begin to walk if he had more muscle strength and brain development from more food.

** The downfalls of using the tube - he might need the tube forever.  He might realize how easy it is to get calories without having to work for it.  He might not gain any more weight any faster.  We will probably loose all the oral skills we spent the entire summer working on. Oral skills are the building blocks of talking.  What if he never talks because we chose to give up orally? What if we deprive him of the joy of eating because we give up orally?  What if we have to carry pureed food, a pump, etc... for the rest of his life because we allowed him to become attached to the pump?

**The benefits of eating orally - he can eat 3 oz at one time through the bottle.  He knows and cries for hunger.  He eats food - stage 2/3 consistency.  In fact, if I give him pudding - he will only eat it if I make it thicker with rice.  He has eaten small small bites of bread (the size of a rice crispy treat) ... but still - eaten them.  He will eat  puffs/ yogurt puffs, etc.  He is progressing with his skills.  He has rolled from front to back, smiles, coos, moves all around, is gaining neck control and trunk control like you wouldn't believe. So.... maybe he is getting the nutrition he needs.  Loads of other WHS moms don't have a tube and would probably not give Alexander one if he was displaying all these things. He has sat unassisted for 2 seconds while during OT.  I did not see this - but heard about it.  Is it possible for an 8lb baby to have enough muscle strength to sit unassisted?  Plus... seriously - how many 7lb 9oz babies do you know that drink more than 2-3 oz at a time? How big can his stomach be?

** Downfalls of ignoring the tube - he already has it. Are we slowing his process by not using it?  I know of 2 moms who started feeding their kid with the tube regularly and their kids are now doing all sorts of new stuff (including walking) and gaining weight like a normal kid.  Also, as we progress into baby foods - it has less calories than milk.  So - when I give him a jar of baby food - it might only have the calories of 2 oz of milk (and that is a pretty high calorie jar)

But how do I take the risk? It is all or nothing.... when I tube Alexander, he doesn't experience hunger.  He doesn't cry for the next bottle or food.  Then I have to tube him again. I tubed him last night - just the rest of his bottle so he would get enough calories and when I called home at 9:15 - he still was not awake and hungry. *sigh* 

I feel like I am choosing between a wheel chair and a feeding pump.  I know - it is not that black and white.  That lots of kids without feeding pumps end up walking eventually - but I also know a lot of kids who I can't help wonder if they would have developed faster / more if they were getting better nutrition.  I also know kids who have been on a feeding pump and learned to eat orally later in life.  Every time I speak to someone who uses the tube - it seems like I am doing an injustice by going oral..... but when I talk to someone who has fought against the tube... they will encourage me to keep going orally.  It is so hard to know what to do.  It is so hard to make the right decision. 

Right now - we are doing a little combo. It is really not working well - and I'm afraid we will have to go with something and stick to our guns soon.  We put medicine through the tube and some MCT oil to supplement our calories.  We give him high calorie baby food.  But .... soon..... we are going to have to make a hard push to go back to all oral or go tubing.  Because - when we use the tube ... he does become lazy with the bottle.  Example: today - he doesn't want to eat ... he wants to be "fed."

Any insights?