When I was pregnant with Avram, we found out at our 20 week ultrasound that something just didn't look right in his brain. At first they told us it was Dandy Walker's, then Agenesis of the Corpus Callosum. It turned out to be neither one. After a Fetal MRI, we learned that Avram had Hydrocephalus (too much fluid in his brain caused by a blocked ventricle) and Bilateral Closed Lip Schizencephaly (little folds & clefts in his brain that don't belong there).
The doctors told us that when he was born, he probably wouldn't be able to eat or breathe on his own, and that if he survived he would need care and assistance for the rest of his life. My OBGYN strongly considered that we terminate the pregnancy.
At 8:32am on April 26th, Avram Daniel Beer was born at 7lbs, 3oz, 21 inches long. Breathing on his own, eating like a champ.
When he was two weeks old, he had a VP shunt placed to bypass the blockage in his right ventricle that was causing the hydrocephalus.
Ever since then, he has been perfect.
Because of the placement of the shunt, it was difficult for him to turn his head to the right while lying on his back. On his 3 month birthday, Ave started physical therapy (which we lovingly call Baby Boot Camp). His therapist (Drill Sergeant Debby) is absolutely wonderful. She comes every week, and she always tells us that she has never seen a baby get so strong and change so much so quickly. We're adding occupational therapy to his line up after the first of the year, just to get ahead of the game.
Even though he is spending practically zero time on his back, Ave developed a pretty serious flat spot on the left side of his head. After recommendations from his physical therapist and his neurosurgeon that we look in to a helmet, we visited the cranio-facial surgeon this month and got all suited for some fancy new gear. He wore the helmet for 4 months, and we ended Operation Hacky Sack Head in January.
The ophthalmologist said his eyes are "perfect." The neurosurgeon turned his shunt all the way down to the lowest setting because it was draining "too well."
A dear family friend, Sandy Thorn Clark, wrote an article about Avram's journey. It was published in the Chicago Sun Times on December 22nd, 2010. You can read the article here.
Just after Christmas, Avram had two focal motor seizures about two weeks apart. He is on anti-seizure medicine for now. He has had eight seizures total in the last ten months. We are still believing and praying that he will outgrow them someday.
He is a little babbler; he has mastered all kinds of sounds & we're just waiting for his first word any day now. He smiles all the time, and has a terrific little giggle. He "sings" whenever he hears music. He is officially cruising, the poor guy wants to walk so badly. He sleeps through the night, and eats like it's his job. He is curious about everything (mostly anything but his toys), and always trying to get his sticky little hands on our laptop, cell phones, cameras...
He's just so dreamy.
To put it simply, he is our miracle boy.
We still don't know how everything will turn out, but we fight to remain grateful for all the gifts the Lord has given us so far.
August 2011, 15 months old
