Maddie

Update August 2019: Maddie is such a sweet girl with an easy going personality. She has spastic cerebral palsy and microcephaly. Maddie prefers to keep her head tilted to one side, but has made a lot of progress in her ability to move it to look the other way. She tends to be very stiff but does great at tummy time and will lift her head up to look around. Maddie also loves to be held and can easily be soothed when you pick her up for some cuddles. Maddie does have a lot of muscle spasms, but we do not think this is seizure activity. Maddie takes a muscle relaxer medicine which seems to help her a lot.

Despite her delays, Maddie is very observant of her environment; she can often be seen looking at those around her and she has gotten good at tracking people and objects with her eyes. Maddie cannot yet sit on her own, but can sit supported on a chair or a bench with a little help in the right places. She attends therapy three days a week for stretching, exercises, and stander time. Sometimes she loves it and sometimes she hates it. Maddie is an easy going girl, except sometimes at meal time when she does not want to eat, but she will gobble down anything that has peanut butter in it. She smiles so big when we sing songs and will make herself known if she doesn’t get to see the pictures when we are reading books.

In December 2018 Maddie got a g-tube. She still eats blended food by mouth the same as she used to, but we use her g-tube to ensure she gets enough liquids and consumes all of her medicine. By mouth she has trouble swallowing thin liquids. Maddie is a petite girl, but has had a good growth spurt in the last year. Although Maddie does not talk, she knows how to communicate. She will smile when happy and will cry to alert discomfort or hunger. She has been working hard in school to learn so many things. Maddie can read and spell almost any one syllable word and her name. Every single week last year she came home from school with a 5/5 on her spelling test. She knows opposites, what happened next, and basic addition and subtraction as well. To show off these skills she uses magnetic letters on a magnetic board and will choose the next letter with her hand. Maddie also likes to use her yes/no board for simple questions and being able to be given choices like what movie she wants to watch that day. Maddie is so smart. With access to more communication devices she will tell great stories.

Maddie knows who her people are and prefers them over anyone else. She loves kisses and will instantly return the favor with a big smile. Sometimes when she really gets going she will let out a belly laugh that forces you to laugh as well.