Update on Kai

It's been a really busy month for Kai. He has had several appointments and a handful more yet before the month is done. Also in this busy month, Kai had a birthday. He is one now. So what is Kai doing. Kai babbles a lot now. I just love listening to him. We are slowing work on some signing with him. He knows his name, but also likes to play the ignoring game. He knows what the words "no-no" mean and doesn't like it. He sometimes gets very upset. He waves bye, gives fives and does "so big". In the last few days he also likes to head butt people or the floor. Not sure why he does that. He sits up on his own, but does fall over sometimes. He gets up on all fours and rocks. He can go from crawling position to sitting and vice versa. He is tummy crawling now. He likes to get into things, especially things he is not suppose to. Cognitively he seems very close to be on tract. We are working on standing with his AFO's. He can't stand well at all without those braces. I can't remember what I last posted about his feedings, so if I repeat, please excuse me. He does 4 bolus feeds on the G-tube during the day and a continuous over 8 hrs on J-tube overnight. He still eats 2-4 ounces of baby food about 3 times a day (we also add the neocate nutra medical food to his baby food). He likes club crackers, ritz crackers and wagon wheels. We just recently started blending up table food for him. He seems to do ok with it, but doesn't take a huge amount, usually about an ounce or so. So trying to get him to drink out of a cup. Getting him to take liquids is very challenging. He doesn't have any teeth yet. Someone told me that the later they come in, the stronger. Don't know if that is really true or not. He has been keeping busy with appointments (he's had 12 doctor visits so far this month and 3 more to go for the month). He will having another surgery coming up, not sure on the date yet. He cannot keep the G-J tube in as it can damage his tissues inside. He will be getting a second hole (a J tube button). So he will have to buttons on his belly. Kai has been battling a cold and upper respiratory gunk for the past few weeks. When I brought him into Mankato Hospital, they said he had pneumonia. We got a little worried and talked to his genetics and we were advised to bring him up to Children's Hospital. Turns out that he didn't really have pneumonia, but there is a spot on his lung. They weren't exactly sure what that spot is, but didn't seem hugely concerned about it. So basically he has a virus and the upper respiratory stuff. Other then him not feeling the greatest lately, Kai is doing pretty good. I think better than a lot people thought he was going to be doing at age 1! Which of course brings tears to my eyes! He is one strong, very determined and self motivated little boy!