More appointments for Ben

Well this week has been riddled with appointments for Ben. The Kidney Specialist wants to have Benjamin admitted into the hospital, because he hasn't been gaining weight. I asked to first see a G.I. (gastrointerologist) to check feeding and digestion issues. There really isn't any reason he should go in the hospital, unless there is something major wrong. I think the biggest problem is his stomach can't hold a lot of food at once, and if you go over 5 or 6 oz at a time he will most likely throw up. Yet he is supposed to intake over 40 oz of formula during the day. Try doing that!! It takes your stomach (normally) 2 hours to digest, and his seems to take longer. He hasn't been getting enough formula, so isn't gaining weight. We are at least finally on the right formula (after my insistance) the previous 4 formula's he didn't tolerate at all and was always throwing up. I insisted that he change to a non-cow milk based formula. He is now on Enfamil Soy Next Step (for toddlers 9 to 24 months)

I really think that his diet needs to be more well rounded. Yet he still won't eat anything...he will drink his formula for the most part (about 4 or 5 ozs every 2 hours) then the rest needs to go through his tummy tube. The challenge I am having is they aren't talking of any other type of nutrition...except the formula. It doesn't quite make sense to me. Percentage wise a child should have a specific amount of carbs, protein, and fats. Well, if your only diet is formula (which is just fine for infants up to a year old) then the amount recieved is possibly out of proportion, for a toddler. So, how do we balance it all out?? I think to have a 'healthy' diet, Benjamin really needs the Fruits & Veggies, Fats, Grains. You know, the whole 'food pyramid' thing.

I, in my not so knowledgeable state, am trying to figure that out. Sweet Potatoes are something that is high in Carbs, yet low or no in protein and fats. Perfect to get those extra carbs in, and they are really good for you. Olive oil is high in fat but has no carbs..another possible solution to get the 'good fats' into him. Yet is this really the answer? And why am I haveing to rack my brain and bend over backwards trying to figure this all out when there are doctors and nutritionist that actually should know this stuff like the back of their hands!?

I took Ben to the G.I. specialist on Tuesday (what a fight for that appointment~initially they weren't scheduling until May. I guess the squecky wheel gets the grease) I told her about Benjamin's constipation..guess what the first thing she said was? 'He needs more water' I wanted to shout 'YES'! I felt vendicated! We have been fighting with the nutritionist on the water issue for months. She says to give him NO, ZIP, ZERO water! That he will get all the 'water' he needs by drinking his formula. Hhmmm...someone who SPECIALIZES in the digestive system seems to think differently. Yay!! I had refused the 'no water' rule a long time ago...but have limited his intake, to a small amount, because of their demands. The last month or so, we have actually been giving him water through his g-tube, while he sleeps at night. (about 8 oz) Well, obviously he needs even more then that 8 ozs. (go back to my previous post, about how they had him up to 16 oz of water in the hospital~yet sent him home with the 'No Water' rule)

We have another appointment next week with the Physician Assistant (to the G.I. specialist) They are opening a new clinic only 5 miles from our house! Another 'YAY'. I am hoping that I will be able to diminish the appointments with his Kidney Specialist. All they do is look at the blood work, and they know where things are with his kidneys. So, I can get blood work on this side of town, and start seeing the G.I. I hope this can happen. Praying for a better rapore with the G.I. office Which I think will happen. It already seems to be more of a 'team' thing with them. I will know more after the next appointment, or 2.

I still hope to talk with a different nutritionist~I think there is one closer to home. And maybe they will see Ben as the toddler he is~and not treat him as an 'infant' still. Comments like 'he is the size of a 6 month old' Or 'with his size, he doesn't need anything more then formula'. etc, etc.

Well, signing off, finally.

~Stephanie