Elisabeth looks normal on the outside but has had to work hard to achieve what comes naturally to many children; such as sitting up, crawling, walking, climbing, chewing, swallowing, and verbal communication. All her motor skills are delayed and need a great amount of effort on her part to do even simple tasks such as push buttons, climb stairs, and have the reaction time and strength to catch herself from a fall. She falls SO often. Her ability to eat, swallow, speak, and do anything that requires physical strength and coordination have been greatly delayed. Elisabeth has had a feeding tube for almost a few years now, which has preserved her life. She was aspirating of liquids and had a close call in the hospital with viral pneumonia. Before the feeding tube her body was using all her strength to fight her continual lung infections. This caused the rest of her body to starve and slow or stop development in order to fight her infections. She has been able to regain her strength and now at almost 4 has reached a healthy weight and height. She still receives all her liquids through a tube, drinks a thickened blended formula for the majority of her diet, and works at eating more table foods. She can now chew and maneuver her food around and swallow it.
Although we have seen improvements in her motor skills overall we have yet to experience verbal communication. She can say “momma”, “eye”, and babble, but that’s all. She seems to understand a lot but has no means of communicating her needs and wants. This has become increasingly frustrating as she is now developing opinions and desires of her own. We do the best we can, but often she will just lead us around the house to the item or situation she wants to tell us about then points and babbles. We make the best guess we can as to what she wants or needs but more often than not she is not able to communicate with others. It’s a very lonely and one-sided way to live life. For Elisabeth the iPad and TouchChat -AAC APP would give her a means of connecting and communicating with others and the world around her. She could make her needs known for the first time in her life! She could share her thoughts of the world around her she is discovering and even ask questions to increase her learning. She would no longer lead a life of silence. As her parents, we cannot express what it would mean to us to have a way to help our little girl communicate. For us to be able to understand her better. Her needs, wants, thoughts, desires, fears, and see more of her personality. I know it would increase our family connection and bonding with her. She could be understood too. Which every human being wants, regardless of the limitations they may experience in this life.
Elisabeth has a very happy countenance. She smiles more than other children I have known. For someone that has been through so much in her little life I am in awe at her bright and happy personality. She LOVES music and dancing. She lights up like a star when we have our little family dances. She screams and giggles as mommy, daddy, brother, and her dance around the room to “When will I see you again” from Wreck-it Ralph or do “Head, shoulders, knees, and toes” together (some of her favorites). Music and dancing have been our best way of connecting so far, and she loves it. She wants it all the time!
This girl also really loves the outdoors. She loves playing in the dirt, sand, water, taking walks, playing on the playground, and touching everything in sight then dissecting it.
Coloring, playdough, and sticker books are also high on her list, but outside of music and dancing she LOVES a good cuddle with mommy and daddy and her favorite blanket watching a show together.
She is also a very brave little girl. She has fallen, tripped, been hurt, and in situations that she doesn’t understand (which can be scary for little people), yet she has not stopped interacting with the world. She keeps exploring, getting up, and trying again. She’s a fighter and a great example to her momma.
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