Choosing a Diet

Round about the time Keller got to be 10 months old I started thinking and wondering about what to feed him next.  He was on Gerber Soy formula mixed to 24 calories and was not taking much by mouth at all.  He would eat a few spoonfuls of pureed fruits or veggies and that was eat.  We were still working with his therapist at that time and she was helping me add textures slowly.  Keller had not seen his GI doctor since January when they found out I had wanted to get Keller off continuous feeding and start grouping feeds together.  In January his doc said see you in 6 months.  Well, in that time Keller would turn one and I needed some guidance on what to feed him.  The dietitians I talked to wanted him off the infant formula and onto a toddler product.  I just wasn't sure.  

Our dietitian that had helped us so much with samples over the first year sent many more samples of "toddler" things such as pediasure, boost, and hypoallergenic formulas.  I thought pediasure was working until one day he cried and spewed for 5 hours straight.  That made us look back into his need for soy infant formula.  You see, we never knew for sure that the soy helped at all.  It was more of less where we stopped trying new things and realized just how bad his reflux was.  This boy could hit a target on a wall.  He also managed to spew all down his back.  I have lost count of the baby clothes I thought were clean when I put them away only to realize he had huge puke stain on the back. Any way to the PediaSure, it was a no go. I spent that day on the phone with many people from doctors offices, dietitians and also insurance companies.  There were two "next steps" according to the dietitians a product called "Compleat" made by Nestle and a couple of  hypoallergenic formulas.  I had asked several times about a blended diet but felt like that was discouraged.  The insurance company told me that none of the options would be covered because Keller does not have any malabsorption issues.  

Compleat is marketed as a "real food" product so whenever I mentioned blending real food this is the product that was mentioned.  I was familiar with this one because one of my best friends Jen, used this with her son for a while and now uses it as a component in his diet the majority however is a real food blended diet.  The first ingredient in Compleat is water, the second is corn syrup and then there is chicken, peaches and cranberries.  Out of pocket this would cost roughly $250 a month for Keller on top of whatever else he would eat by mouth.  There are a couple of hypoallergenic formulas that were offered one is Elecare Jr and the other is NeoCate Jr. These would cost us about $580 a month and upon closer look at the ingredients I found that they were 65% corn syrup and oil solids.  Now, I cannot fault any of these products as I am sure there are countless little lives that have been saved by each one.  I just did not feel that any of these options were right for us.  

I continued to mention a blended diet and ended up talking to 4 different dietitians.  For those that don't know, a blended diet is just that, you take what a typical person would eat in a day and blend it together into a smoothie of sorts and give that via tube.  I had seen wonderful testimonies online about guts being healed and reflux getting better.  But I didn't really feel like any of the dietitians had the same enthusiasm. But I knew from my friend Jen that her son had greatly benefited from a real food diet.  So I continued to prod and research.  I didn't know where to start other than knowing how many calories he needed a day.  I didn't know his water requirements, fruits, veggies, grains....anything. Facebook has a lot of faults, but it is a invaluable lifeline for moms and dads and families of special needs kids and adults.  There is a group specifically for people that make and/or "eat" blended diets that has great resources in websites but also real people that do this everyday.  One pointed me to the USDA website that allows you to enter a possible days intake and see the calories and nutrients. I came up with a possible recipe and ran it by my friend.  It looked like it would cost us about $60-70 dollars a month to feed him real food. I mixed some up and very slowly introduced into Keller's diet.  All seemed to go well. We noticed an increase in his energy, his bowels seemed to be moving well and his vomiting stopped.  Stopped!! He went from a kid who threw up 5-10 times a day to a kid who kept everything down.  I was really liking blending but his food was clogging the bags that he uses for overnight (throughout the day I feed him with a syringe in his tube).

The blending was easy enough but our blender was sub par for sending food through a small tube.  We borrowed and tried out a few but it was looking like we would need a "really good" one, a professional one.  We looked into Blendtech and Vitamix.  About two and half weeks into his new diet Keller woke up out of sorts. He cried a lot that day. Around lunch time he started throwing up. He was high mantenance enough that day that I called my mom in for back up and for those that know my independent nature that should be a huge sign of his temperament. About the time the doctor's office closed for the day things got worse, which is just what Keller does. They made an appointment to see us the next day.  We are always on the lookout for signs of volvulus, which means that his bowels could kink of because of their abnormal placement.  The things we are to watch for are for him to stop passing stool, vomit bile or not be able to keep anything down.  Well, he had pooped that morning so I thought we were ok but the fact that he could not keep pedialyte down was a big sign to us. By 8:30 pm Phillip and I realized that we needed to take him to the hospital and since he is complicated we opted to take him to Greenville so we could be close to his specialists.