Joel's Story / Update

Photos are from Nov. '07 through Jan. '08.
They are just a small view of Joel's life right now.

Joel’s Journey 2005-2007

An update on Joel

Joel was born in September 2005. When he was nine weeks old, after 4 days of extensive testing at Children’s Hospital, he was diagnosed with Tuberous Sclerosis which is a serious seizure disorder. His brain, we learned, is full of Tubers. Approximately, more than 80% of his brain was malformed. This caused constant underlying seizures with 5-40 seizures per day that we could see. The next 13 months was filled with sadness, stress, doctors appointments, numerous anti-seizure medications (many at the same time – some helped although none made the seizures go away), and therapists appointments (the seizures caused developmental delay). There was much prayer during this time but the seizures never stopped. He was not developing. At 1 year old he was still not rolling over. We didn’t know if he could see because he never looked at anything. It was clear to us that something needed to be done to help our precious baby. Nine days after his 1^st birthday we went into UCLA Children’s Hospital. We spent a week there undergoing testing. Through a series of doors that God opened it was clear to us that extreme brain surgery was God’s will for our little Joel. They needed to remove almost a quarter of his brain to hopefully stop the seizures. Through testing we learned that this part of his brain wasn’t working which helped us with our decision. With God’s help, on December 14^th, 2006 we handed our 15 month old baby to a medical student who would take him to his 8 hour surgery. It was the hardest day of my life. I don’t know how I would have made it without God, but somehow knowing that He was in control and had brought us there helped calm me.

Recovery was difficult and we ended up back in the hospital in the Pediatric Intensive Care Unit (PICU) on Christmas Eve with complications. But God protected Joel and we were back home by the second week of January to celebrate Christmas with our 2 older sons. At that point they had been living with their grandparents for a whole month while we were at the hospital.

The surgery did stop the seizures as far as we know. Two months after surgery (in February) Joel started crawling. Six months after surgery (in June) he started walking. We started seeing him smile and he started interacting with us. The surgery took away the right side of his eyesight, so he is visually impaired, but the eyesight he has is developing and getting better.

It is now a year after surgery and Joel (now 2 years & 3 months old) is truly our “Miracle Baby”. Although he doesn’t talk yet and he is slow in fine motor skills and cognitive thinking (he is catching up slowly), he is rapidly catching up in gross motor skills. We once thought he wouldn’t walk – he now loves running after his brothers. We thought he couldn’t see – his eyesight is improving. We thought he wouldn’t talk – he is making great progress and just last month started gesturing for what he wants. We thought he wouldn’t interact – he now smiles and kisses and loves to play. God has given us a miracle.

I would like to let you know, though, that we do still need prayer. Joel’s seizures could return at any time for the rest of his life due to other malformed parts of his brain. He could also develop tumors on any of his vital organs (especially on the brain). This is part of Tuberous Sclerosis. And we need prayer for continued progress in his development. I trust God that he will guide us with Joel’s life and that he will continue to make him “our miracle”.

Thank you to everyone who has supported us these past couple years. We couldn’t have made it without your love, prayers and support. Each kind word and loving thought has given us the strength to survive. We love and appreciate each of you.

Blessings, The R Family