Part of Super Nevets condition is the inability to gain weight. We've struggled with it since he was like 3 months old. He came out huge (9lbs 11oz) but that was it. His neurosurgeon said it was really good that he was that big considering the severity of the operation he had when he was less than 24 hours old :D We've done all kinds of  testing to make sure we were missing anything. All came back normal. We've had him on a very high calorie diet since he was a wee one. Average calories for breast milk or formula is roughly 20. We had his bumped up to 40/45. We did pediasure and all kinds of other things. We've been adding butter to everything he eats since he went to solids :) Nothing would make him bulk up. We finally switched pediatricians after his first way refused to see anything but a chart. He wasn't following standard growth charts, so he was a failure to thrive child and I was a bad mom. We got an amazing new doctor. He noted that he was following his own growth chart and that was enough. He was still growing. Just slowly :) What a relief. So, I have finally realized that he's gonna eat what he wants to eat. He's 6, almost 7 years old. An average child has developed his own taste and knows what he likes. I try to make his diet include fruits and veggies as much as possible. If it turns out that's in the form of  smoothie and/or juice, I'm cool with it. He's a super active little man, so he eats like one :) Some days I'm shocked by the amount of food he can put away. Today, we had his "well check" before he goes back to school. Turns out, in roughly 5 months, but little chunk has gone from 37.04 lbs to 43.5 lbs. His pediatrician came in and was "What happened???" I told him he just woke up one morning and he was a giant LOL He's holding his own at 41 inches tall. He's now actually on the chart LOL H'e in the 16% for his weight. He's only about 6 lbs less than the average 6 year old and about 6 inches shorter than average. For once, my little guy is about average :) The only "problem" with that is that his BMI has gone up about from 16.3 to 18.4. Am I worried about him being obese? Oh heck no. He has a pretty well rounded diet, albeit, if I let him, he'd eat his weight in cheese daily :) He's an active kid and with school starting, that's only going to increase. I'd say this crazy weight gain is gonna go in the WIN category for Super Nevets!

Struggles

As I spend yet another night cleaning up vomit, I'm reminded of the limitations of Nevets that I just don't understand. This is by far one of the most frustrating and I wonder if it's something he'll grow out of or if I just need to accept it. The slightest hiccup can bring a whole meal up. Any kind of gag at all and we're on clean up duty. If he gets really upset, more cleaning. He can be just fine, eating and being happy. Filling his little tummy when BAM. I know he hates it as much as I do. He doesn't get it either. And that's really frustrating on a different level. Besides, how am I supposed to fattened him up if nothing stays in the tummy? :)

changes

There have been some big changes in our home. Mommy has quit her job and will now be a stay at home mom. That being said, we're going to breathe new life into our blog. Be prepared for weekly posts :)

Hey everyone!

It's been a rough end of year for our little family. Nevets's little brother was born sleeping at 34 weeks. We've been struggling to get a little sense of normalcy in our lives. I should be able to get caught up on everything going on in the world of Super S within the next few weeks.

Thanks for reading :)

Yup. I'm horrible. Between all of Super Nevets doctor and therapy appointments and all the appointments for this pregnant, diabetic momma, I barely have time to breathe. Quick update: he's rocking school! Loves it! He's been making lots of strides in physical therapy. He is a lean mean talking machine. In December, he will start his first round of botox for his muscle rigidity.

I hope to get the time to update you all on the MANY things Nevets has been up to this weekend :) :)

progress progress

Nevets has been showing some serious progress in physical therapy. We have been working on a few things like his balance, jumping, and high-stepping (picking up his feet). Today he made his way through an obstacle course doing all that but jumping. There was a huge pile of toys-turtles, monkeys, and pigs. All of which he loves. He had to pick up a toy and then climb up some stairs and climb down. He then had to step over (high stepping) a row of swim noodles without touching the noodles or he had to start over. After he made it over the noodles, he had to walk over to a basket and deposit his toy. He then had to make his way back to the pile of toys, via all the stuff he had just done. He did this about 12 times. After all that he still had energy to jump. So his therapist, Dawn, incorporated some jumping activities towards the end.

Dawn was very pleased with the progress. Every time we go, he shows improvement. We see her every 2 weeks. She works him hard and doesn't let him get away with "cheating." I'm so excited!