Doctors don't know very much

I just read an article on CNN called Five diagnoses that call for a second opinion, in which diagnosis number 3 is "Pregnancy termination for fetal abnormality". While Esther was pregnant with Lucas, we went through at least 5 ultrasounds and 1 fetal MRI. Besides Dr. Brondz (Esther's OB - who was fantastic), we spoke with 2 different doctors and a genetic counselor. These doctors stressed how devastating Lucas' diagnosis was and brought up the option to terminate. Esther and I made it clear that this was not something we were willing to consider.

We understand very clearly the serious nature of Lucas' diagnosis. But today, almost 9 months after learning what holoprosencephaly is, we are able to spend our days with a beautiful, happy, intelligent baby boy - and we love it so much. Lucas is doing so many things that the doctors said he would never be able to do, and besides having a shunt and a big head which he can't move around so well - you would never know anything was wrong with him.

While Esther was pregnant, we heard many similar stories from parents who were given horrible prenatal diagnoses only to find out that their babies were fine. I think this happens more than most people realize. And if anybody who reads this is faced with this situation, I ask that you remember Lucas and remember to put your faith in God before you decide that your doctor knows anything at all.

Some new pictures

Lucas has been doing great over the past few weeks. His brooklyn grandparents came to town, and they had a great time hanging out with the buddy. He's growing so fast. Esther weighed him yesterday - at 16lbs! He's not even 3 months old! He is definitely living up to his nickname of the master of chub.

Lucas : August 2007

Video: In the big chair

Today esther got to film the buddy hanging out in the big chair.

Lucas is a chatterBuddy

Lucas has been very chatty lately. Here's a clip from today

Still stumping them

Lucas had his first physical therapy appointment yesterday with Karey, who will be coming to our house every 2 weeks. His pediatrician wants him to receive physical therapy due to his diagnosis to make sure that his development stays on track. Lucas was in a great mood the whole time that Karey was over, and she said that Lucas is doing great. He's still behind in his head movement, but his eye tracking is emerging and Karey is very pleased with how he is doing.

Today, Lucas went into the eye doctor and had his pupils dilated so that they can check his optic nerve. His MRI showed that his optic nerve was small, but the eye doctor said that he wouldn't even have noticed the nerve being small if it wasn't in the report. He said that Lucas' eyes look good! Another relief!

Lucas continues to amaze us everyday. Here are some recent pics:

Lucas - early summer

Superhero?

Today we had an appointment with the geneticists at Children's Hospital. They said that Lucas' chromosomes are normal - which is great! They also had the official MRI report, which now states that his HPE is somewhere between semi-lobar (medium) and alobar (severe), which was news to us. We asked the geneticist to clarify with the radiologists.

The radiologist was glad that the doctor called to clarify - because apparently Lucas was the topic of discussion at the weekly conference of neuro radiologists today. They looked over his MRI scans and they've decided that they have no idea what Lucas' diagnosis is. They say that his brain has symptoms of all three severities of HPE, but he also has some brain matter that is not consistent with HPE that appears to be formed correctly and which they cannot identify. Nobody has ever seen a brain like his before.

We will be sending his MRI scans to HPE specialists at the Carter Center in Stanford University. Hopefully that will provide more information. Right now, our best guess is that he is a superhero. But please keep that under wraps. We don't want any super villains knocking on our door.

4th of July spectacular

Here's today's video clip of Lucas. Planning out next year's fireworks display in his head along with his trademark gruntings, smilings and dolphin calls.