20 Month update

My son has made amazing progress in the last year. I have not posted for many reasons, but I thought an update now would be nice since all the activity is picking up again. Lucas is almost two years old! Time has flown by, as usual, and he is hitting new milestones all the time.

To date, Lucas still requires a feeding tube to take in most of his nutrition. He has overcome aspirating liquids - for a while now- and can drink without thickening through a sippy cup, straw or regular cup with assistance. He does eat regular foods as well, but still not nearly enough to get the calories & nutrition he needs. His favorites foods are green beans, chicken, pizza, spaghetti and his Gerber puffs. He also likes cookies and ice cream of course.We are currently working him up to a 1200 calorie diet since he hasn't grown very much in the last 4 months and because he's older so needs more.

Lucas wears Trust Orthodics braces during his waking hours to assist with stabilizing his ankles and feet. They have helped him bridge the gap to walking and he has already taken several steps on his own - even without the braces. We are working on getting him to shift his weight forward for better balance. He does like crawling up stairs, but hasn't grasped how to come back down yet.

He had several upcoming appointments including his eye exam yearly check up, follow up with the geneticist, and an appointment with a clinic at Childrens Hospital that assesses ongoing needs and places children with the right specialists.  Lucas still sees a physical therapist from both the daycare & OPS, but we might be switching to the OPS teacher soon. There is also a good chance that soon we will be reducing or eliminating they daycare time due to a change in our tuition assistance coverage.

Our focus with Lucas now is working on his language and cognitive skills. We want to make sure he is meeting all milestones associated with these areas. He is already using words like Up, No, Go, Ball (ba), cracker, popop, mommy and dada consistently. We have heard him say other things, but only once or twice. He also says please, thank you, (more)  in sign language. He enjoys trying to figure out how things fit together or plug into stuff, so we have to keep an eye on him around the TV or power outlets. I'll try to update more often with pictures and videos, but updates to FB are more frequent if you'd like to check his progress.

Thanks all