Friday, June 10, 2011

Life with Microcephaly and Cerebral Palsy

I have been a follower of Kelly’s Korner for a couple of years now, but this is the first time I have joined in on her Show Us Your Life. When I saw her post this morning, I knew I had to join in.  

Totally not planned, so that would explain my two post in one day…go me!

I think it is great that she is doing this. It is kind of nice to know you are not alone and that other families are going through the same struggles and heart ache. Sometimes we feel like we are all alone.

My daughter, Aydrie, is seven years old and has been diagnosed with a form of Microcephaly and Cerebral Palsy.  

When Aydrie was five months old, we noticed she was not reaching the set milestones for an infant her age. That was the beginning of lots of testing, therapy, and doctor visits. For about two or three years, we had no diagnosis. Finally, at the age of three or four, she was diagnosed with Microcephaly and Cerebral Palsy.

At the age of one, Aydrie was not sitting, holding her own bottle, crawling, or anything. So, at her one year birthday she was so tiny and didn’t look or act like a one year old. 

She couldn’t sit by herself without support until she was like three years old, and after she was a supported sitter she learned to crawl and pull up on things. Then, she learned how to feed herself. She still can’t use a spoon, but she can pick her food up with her fingers and feed herself. She can now drink from a sippy cup all by herself. At times she is lazy and will not even do that. She would rather you hold her cup while she drinks.

She is non-verbal and not walking. She has, within the last couple of months, started walking by herself. They are very short distances, but it is a start. We are all hoping one day she will be able to walk everywhere.  So, she still crawls everywhere.

She has always been very tiny for her age and now, at the age of seven, she is still tiny compared to other seven years old. Our Aydrie Rose just graduated Kindergarten. She walked, with her teacher's help, across stage to receive her diploma. You can read about it HERE. We now have a first grader!

Aydrie loves her brother's and she is a big Daddy's girl! I could go on and on forever about her, but I will not do that. I did a post a couple of months ago that was all about AYDRIE, that you can read to learn more about her. You can also read more about our everyday life and how it doesn't slow us down in several posts HERE and Here.

She is a strong little girl and has made so much progress within the last couple of years. It may be a little harder having a child with disabilities, but we all love her so much and our life with her is normal to us. We couldn’t imagine it any other way. 

I do some times sit and think why Aydrie, why us but then I realize that some people may and do have a tougher time and then I am thankful that my daughter is able to smile, laugh, and live a happy life.  She may have a few complications but it's nothing we can't handle.



Shelli said...

Thank You for posting! My son was born with a rare neurological disorder. He is unable to sit or walk. He is also no-verbal and tube fed. He is the sweetest little guy. We are so blessed! Your little girl is ADORABLE!

Sheila M said...

Our daughter has been diagnosed with microcefaly and cerebral palsy too. Would you mind if we talk through email to gain some support?

Hannah Banana said...

Wow! We just adopted a 2yo little girl who has been diagnosed with microcephaly and CP.

I would love to stay in contact with you... as my story sounds a lot like yours.

jstrange said...

Found this blog from Pinterest, came here and read this entry. Wanted to share with you the most amazing summer camp for kids/adults with all kinds of disabilities: I worked there for a summer, and I truly believe that it is a wonderful place! It's near Denton, TX.

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