The Life of Kai & Mimi (+Me): Temperance Maleia

As most of you know, or may not, my daughter Temperance Maleia "Mimi" is special needs. She was born with Microcephaly, a neurodevelopment disorder in which the circumference of the head is more than two standard deviations smaller than the average for the person's age and sex. Basically, the size of her brain (and head), was about 1/4 the size it should be at birth. She was born on May 18, 2008 at 37 weeks, but measuring between 29-31 weeks, approximately. I noticed about 3 weeks before I was induced, that I didn't seem like I was getting much bigger, since when I had my son, I was huge. Not so much with her. They measured me and noticed she was not the size she should be. Within a few days, I saw a Perinatologist, and the decision was made to go ahead and induce me at 37 weeks. When she was born, she weighed in at 5 lbs and 3oz. She was 17 3/4 inches in lengths, with a head circumference of 10 1/2 in. As expected, her head size was smaller than normal and they wanted to do a MRI to see what was going on inside her brain. We were scheduled for an MRI within a few weeks, but when we got there after waiting for several hours, the doctor declined the testing, because technically since she was so delayed in growth, she still wasn't "fit" to undergo an MRI, since she would have to be sedated. Something which should of been known, before the MRI was scheduled, but oh well!! Finally, February 2009, she got in for the MRI and it was confirmed Mimi was Microcephalic. Next thing I knew, we were up in Chapel Hill visiting the Neurologist and Geneticist, which in my opinion really didn't get me too far. We still don't know how she developed Microcephaly, but I have my own opinions on that. Spring of 2009 (before Mimi's 1st birthday), I believe, Mimi started Physical Therapy, once a week. Followed by Occupational Therapy, once a week. Mimi didn't start to crawl until she was around 16-18 months, didn't walk until after 2, and even though she's walking now, she doesn't have the best stability when it comes to walking. She walks/runs together.

Mimi will be 3 in less than 4 months. She does not talk, even though she does babble and YELL at times. She can say "mama" and "dada", but as far as if she knows what she's actually saying, it's still unclear. Currently she has PT every other week for a day, OT once a week, Speech Therapy once a week, and Play Therapy once a week. All the ladies who work with her are GREAT and I love them for all they have done for Mimi over the years. You can still progress, which is good!! Since Mimi is not talking, even though she does find ways to communicate, I've decided, I'm going to dedicate my time to working on sign language with her. Her therapists work with her during the week and from the little bit I know so far, I think it will help her so much, when it comes to communication, since no ones knows when and if she will be able to talk normally. My goal is to become Certified in Sign Language, in the future. Not sure when and how, since I am a full-time student, raising two kids on my own, with the help of my dad. But this is something I want to do and will find the resources to make it happen. Plus, if it helps me communicate with my daughter, I'm all for it.

Mimi has a 4 year old brother Kai, who she absolutely loves and he will be learning signs too, since he talks with her all day, every day, of course. This blog is basically to help me keep track of signing with Mimi and to share our experiences. I hope to post at least twice a week about progress, with pictures and/or video. This is something that will be a learning experience for both myself and Mimi, including her brother and whoever else.

This is the life of Mimi growing up as a special needs child, with love and support from her family. Regardless, she has us, always and forever. Let's go!!!!