It’s Time To Eat
In children with Angelman Syndrome, it’s estimated that 60 percent have feeding difficulties. This can be either under or over feeding. There’s anecdotal stories of parents having to lock cupboards because their angel will just continuously eat.
This is not Maddie. Our little one is on the under feeding side of things. Since she has low muscle tone, there’s an issue with swallowing thin liquids. Maddie was showing signs of aspirating. We now have to thicken her liquids to the consistency of nectar. Also, since her diet is significantly different than children her own age, we were forced to start using PediaSure. Madelynn gets all of her daily nutrition through the PediaSure, and anything we can feed her is just bonus nutrition.
Eating is a major issue we’re looking to improve with therapy. Maddie has never been able to hold a bottle on her own. She is making great strides. I shared a video on Facebook a few weeks ago showing Maddie’s new “trick”. She has a specially designed bottle that is easier for her hands to grab. She is now able to grab that bottle by the straw and take a drink of water all on her own. As a headstrong toddler, this is by far her favorite thing to do.
Madelynn will sit there in her highchair and communicate in sign language for a drink. This new found independence for her, has bled into other parts of her life as well. Maddie is constantly trying to grab for her own food instead of allowing us to feed her. Some days, she flat out refuses if we are the ones feeding her.
This has made breakfast, lunch, and dinner really messy. I mean really messy. Have you ever seen a child that is unable to control some hand and arm movements try to get avocado into her mouth? She looked like the Jolly Green Giant, or a baby Hulk. This new found independent streak has caused Maddie to start refusing softer foods as well.
As soon as a puree goes into her mouth, she immediately spits it out all over mom or dad. We have been introducing hard boiled eggs, avocado and toast, and a few more solids into her diet. This past Friday, Maddie did something that she had never done before. She reached for her fork, and fed herself. She has repeated this a few times now over this past weekend.
Our Maddie will amaze you. Her desire to be independent will take her places. These might seem like small victories to a neurotypical child, but to her it means the world. Oh the places she will go.
- Written by Adam Birchmeier
