microcephaly | Flamidwyfe's Blog

I am 48. Thirteen years ago, on April 25, 1999 my daughter Jenni gave birth to the most perfect little bundle of joy. Celeste Alena. Jenni was 15. I was 35.

I remember walking around with the silliest grin on my face for days. I smiled so much my face muscles ached 😀 My daughter was an amazing birther, short fast labor, just like me.

We were surrounded by people who were important to us. Carolyn, my partner in birth, Lisa Wick, my midwife friend from school, there to take over if I needed to be Jenni’s mom instead of midwife, Ray, Celeste’s father, Dodi, who gave birth to a 10 lb 12 oz boy the October before and Candy, a family friend who videotaped the birth.

We reveled in Celeste’s perfectness. Her sweetness, how wonderful she breastfed, how well she slept.

Around 5 weeks old, I started feeling something was “off” about Celeste. She looked through you, not at you and she wasn’t tracking us with her eyes. Our family pediatrician told me to be the grandma, not a midwife… that everything was normal. I wasn’t happy with that. At 9 weeks old, I secured a consult with a pediatric opthomologist. he diagnosed Celeste with a retinal issue and said she was legally blind. Devastating, but doable. I was actually relieved.

At our 13 week visit to the pediatrician, we brought her the info from the eye doctor. She was humbled by it, and murmured an apology. She had been our family ped since 1981, I understood. Then as she was examining Celeste she uttered the one word that threw our lives upside down… MICROCEPHALY… I burst into tears, knowing the gravity of such a diagnosis. Dr. Rojas was also very emotional… Poor Jenni and Ray had no idea why we were upset. Microcephaly means small head/brain. Back in 1999 if you searched (there was no google) the term, it came up “profound retardation, short life span, approximately 10 years”. We were devastated.

A neuro consult 2 weeks later would give us the diagnosis of Agenesis of the Corpus Collosum, essentially Celeste is missing the middle part of her brain, the part that separates the left and right hemispheres. She is severely disabled. She does not stand, walk, sit or talk (a few words every once in a while)
She DOES bring happiness to those around her, have the most brilliant smile, loves stealing toys from babies if she’s propped close enough, has a clever streak, understands EVERY WORD YOU SAY!!!

She is 13 today… A teenager. I’m a grandma to a teenager… WOW!

Here she is, the center of our universe!

HAPPY 13th BIRTHDAY, CELESTE ALENA BLANKENSHIP!!!
I love you,
You know it’s true…
Celeste Alena Blankenship,
I LOVE YOU… Momma xoxoxo

Something a bit different than my Dukan diet… A story about my oldest grandchild, Celeste and a special request for my blogging community.

Celeste was born with a brain abnormality called microcephaly, which means small head, which results in a small brain. She also has agenesis of the corpus collosum. The corpus collosum is a thin, tendon like membrane that separates the two sides of the brain. In Celeste’s case this has caused severe developmental delays. She does not sit or stand on her own. She is unable to feed herself or even roll over… But she has the most amazing smile and personality of anyone you could ever meet.
Celeste will be 13 on April 25th. When she was little it was easy to move her from one place to another, put her in a carseat and buckle her in safely. This isn’t possible anymore. For starters she’s growing and is dead weight and difficult to transfer into the car. Because of her brain abnormality, her limbs are rigid and my daughter and her hubby have to use extreme caution getting her into the car without hurting her.
My daughter Jenni has signed up for a contest to win a wheelchair accessible van. This would be a God-send for them. Purchasing a van is cost prohibitive (contrary to what a lot of people think, insurance does not pay for this).
If you could take a moment of your time and click the link below, I would be so very grateful. If you’d really like to increase Celeste’s chance of winning, you can click everyday 🙂
The PROMO CODE for the first time is 873… If you use that code, she gets 5 votes from you!

http://nmeda.com/mobility-awareness-month/heroes/florida/jensen-beach/883/jenni-macmunn

Here’s a pic of my sweet girl… If she could, she’d tell you THANK YOU 😀

Here’s a message from Celeste’s mom:

As many of you know, Chris & I really need a wheelchair van to safely transport Celeste. As she gets older & bigger, it gets more & more difficult to lift her in & out of our vehicles. The company below is being very generous by giving away 3 wheelchair accessible vehicles. It would be a huge blessing and relief for us if we were to win one of them. The winner will be selected from the top 10% that rec’d the most votes. Voting is going on now & ends on Sun., May 13th. We really need your help! Please vote for Celeste every day by searching “MacMunn” on http://www.nmeda.com under “Local Heros”. Right now, some people have over 3,000 votes & so we have a long way to go. Please share on your FB pages, blogs, etc. We really appreciate it. Enter promo code “873” the 1st time you vote to get 5 entries instead of 1. Thank you all so very much!

And thank you, from my WHOLE HEART!