Tuesday, September 30, 2014

Living Small

September 30th, 2014 marks the 7th annual Microcephaly Awareness Day.  Micro Day was started in England by a then 12-year-old Robin Freeman, a young man who, himself, has microcephaly.  The following year it went global.  P.S. Robin is now a high school graduate and attends University.  He's the man, FOR REAL.

Another year has passed and Anabelle's head circumference holds steady at 15 3/4".  This is a typical trait of microcephaly: that the rest of the body grows faster than the head.  Although Anabelle is an extreme case, her head has not grown since the age of 6 months.  Luckily, a full head of hair fills it out!

Anabelle's big news since last micro day is that she became a BIG SISTER!  She and baby Wes love hanging out and enjoy many of the same things, like Elmo and Baroque music.
Seconds later, Anabelle pinched him and he started screaming.  Ah, siblings...

Like every year, we have made more friends along our special needs journey, and I want to share some of these special people with you.

This is the happiest face you will ever see:

Our buddy, Mason, will be three in December.  He has an older brother and sister.  He loves playing with lights and things that make music.  He is working on sitting, and started army crawling a few months ago, and now you can't stop him!  He shakes his head "no" and his mommy sure hopes to see a "yes" one day soon!  Mason and his family live nearby us, and we get to hang out, which is AWESOME

The pretty red-head in the center is Mason's sister, Kaylee, along with two other micro siblings, all of whom attended Anabelle's fourth birthday party this year

This young lady is Shelby.  Shelby's mama and I have been friends since the beginning of this journey.  She has an older brother and sister, and a new baby brother has been added since I met her.

Shelby's microcephaly was caused due to a lack of blood to the brain during a traumatic delivery.  Like Anabelle, she eats with a feeding tube and has daily seizures,  Also like Anabelle, she is always smiling and laughing.  Her mama says, simply, "She is perfect."  I've watched Shelby grow from a little peanut, and I couldn't agree more!!

This little cutie is Zaine. He will also be three in December, like Mason. He has 3 older sisters to love on him. He was born with a normal head size, but began showing signs of something being off and at three months had an MRI that showed he had lissencephaly. As he grew, his head did not, and he was soon diagnosed with microcephaly, as well. The cause of Zaine's impariments turned out to be Cytomegalovirus or CMV. This is a virus that the mother can contract while the baby is in utero. In the mother, it looks like no more than a cold, but it can be devastating to the fetus. CMV is one of the more common causes of both microcephaly and lissencephaly.

Zaine has a feeding tube, but is also working on taking some food by mouth. He can roll over and wiggle across the floor and is working on walking with a gait trainer. He can say a few words, like "mom" and "dad" and can sign more. He has been seizure free for over a year and is generally a healthy little man!

This gorgeous little man is Brogan. He just turned three and has microcephaly and polymicrogyria. When he was a year and a half, he also developed a brain tumor. Thankfully, it was safely removed and was benign. As you can see, he is working on his standing and has a smile that lights up the room! He has two older sisters who spoil him and he just started school. He has a feeding tube, and is a poster child for Tubie Toppers, our company that makes feeding tube pads. Brogan has been having a very difficult time with seizures and illness lately, so we hope he starts feeling better real soon!

And now comes the part of the Micro Day post that I hate. The update. Every single year, I have to be the bearer of the news that another one of the precious babies I have featured here in past years has left this Earth. This year is no exception. Beautiful Brady, who I introduced you to in 2012, gained his angel wings on Christmas Eve, 2013. I was gathered with family and friends, as I am every Christmas Eve, when I got the news and I had to excuse myself. Brady's mama is one of my oldest special needs friends. The very first night I found the online Cephaly community, she and I chatted for a long time, and I learned a lot about what to expect. Brady is survived by his loving mother and three sisters who all miss him so much

This road can be a hard one, friends, but there is also a ton of rewards, and even more special people that we have met along the way.  Microcephaly Awareness Day isn't just about spreading awareness.  It's also about showing the families in the microcephaly community that you CARE.  That you CARE about their struggles, that you CARE about their victories, that you CARE about their amazing children.

So come on, friends, let your YELLOW SHINE!