It has been too long since I did a Leo update. I am always so encouraged reading everyones updates and catching glimpses of what is to come for my little man. I hope this update is an encouragement to those coming behind us with younger kiddos.
Leo turned 3 on April 30th. In the past year, Leo has learned to crawl and walk using a walker. I am waiting for the day when Leo takes his first solo steps without any assistance. He is gonna do it, I just know it. He likes to sit on his platform swing and amazed his therapist at his ability to pump his legs. Something he learned watching his brothers.
Leo MUST be doing what everyone else is doing or he is NOT happy! He thinks he can play his brother’s drum. Leo loves playing cards with his brothers. Leo may have just turned 3 but in reality he thinks he is one of the big kids!
His brothers and sisters are his biggest cheerleaders and motivators. He wants to be just like them and will attempt to mimic everything they do. Leo will carry on a conversation with you with appropriate grunts and sounds, but no real words yet. Most importantly, he understands everything said to him and will follow instructions. His therapists are amazed at his receptive language skills and in the beginning have underestimated him because he is not considered verbal.
Leo suffers from seizures, mostly febrile but also myoclonic seizures. He is on a daily seizure med. Leo is also followed by cardiology for an ASD and will most likely have the hole closed when he turns 4. Leo also is followed by the kidney doctor for small kidneys. He is followed by a bunch of other doctors like eye and ENT and general surgery for his g-tube but for the post part he is healthy and stable.
Our biggest battle continues to be eating by mouth. He sees no need for food. He is g-tube fed but we are daily working on attempting to get him to eat and drink by mouth. This is probably one of my biggest frustrations as his mom. He will sit at the table and put food up to his mouth, he enjoys the social aspect of eating, but will not actually eat.
Leo has come so far and is an inspiration to me in his determination to always do more. He has taught his siblings so much about love and compassion. They do not see his disability but rather we will often hear them talking about one day when Leo gets married and where he will live when he graduates. We let them dream big dreams for him. Everyone should have someone cheering them on and encouraging them to go farther.
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Leo is fortunate to have 5 siblings to imitate. Imitation is Rochelle’s preferred learning mode. I am really impressed with his ability to walk, swing, play cards and the drums. It certainly looks like he has the potential to master anything, including speech and eating. He is a very interesting little boy. Thanks for sharing.
This is inspirational to me. My Nathaniel is 2 and a half and still cannot sit up alone without some assistance. He definitely wants to and will do a sit up and hold his position for a few seconds….some times longer than others. And if he falls, he’ll do it again and again. I know he’ll do so much more, but I guess I’m just impatient. He also is mostly g-tube fed and on the Ketogenic diet, but I’ve always continued to feed him orally, even if it is just protein. He kinda forgot how to eat for a while, but I was afraid he would loose oral fixation so I kept on trying….and he loves it. I do forget sometimes and he gags because he gets full, but then I stop. Your little guy seems to be doing wonderfully. I can’t wait to be able to post something similar to yours.