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.

His first MRI

Lucas was such a champ yesterday at the hospital! This boy continues to amaze us. He was sleepy and content in the car ride over, and started to get a bit fussy while we were waiting for the MRI to begin, but sucking on esther's finger seemed to satisfy him just fine. We held his hands as the anesthesiologist administered gas to put Lucas to sleep so that they wouldn't have to put the IV in his arm while he was awake. An hour later, we were at his bedside in the recovery room, and within 10 minutes he was awake enough for Esther to feed him (and boy was she ready to!)

Yesterday wasn't actually his first MRI, by the way. If I were a proper blogger, I'd have started this thing a long long time ago (that's what last August feels like today anyway - a long time ago) - back when I heard God tell me in the desert of Baja, Mexico that we would have a son and that we should name him Lucas.

Baja, Mexico

2 weeks later, Esther was pregnant (very unplanned) and our world was changed forever.

A lot has happened since then. A whole lot.

At our 20 week ultrasound, the doctor took concern with Lucas' brain development. After more ultrasounds and a fetal MRI, Lucas was diagnosed with holoprosencephaly - a rare brain disorder where the right and left lobes of the brain fail to correctly divide. We were given lectures about how horrible this diagnosis is, and spoke with many doctors who had no faith. Fortunately for us (and for Lucas) - we did have faith. A lot of faith. And we know that doctors get things wrong (at the same 20 week ultrasound, they told us that he was going to be a girl!), and weren't going to allow a diagnosis determine the future of our baby.


20 week ultrasound

When we first found out that we were pregnant, I began reading the Bible to the baby twice a week before we went to bed. Once we got this diagnosis, I began reading to the baby every night - and continued that throughout the pregnancy. With Esther reading to him in the morning, and with me reading to him in the night, we figure that we've read through the entire Bible with him while he was in utero.

As we got closer to 40 weeks, we found out that Lucas' head was very large - due to excess fluid in his head. We had taken a 10 week Bradley class that focused on natural, drug-free childbirth, but it was apparent from the size of his head that a natural birth wouldn't be possible. So we scheduled a C section for May 14th - 2 days after Esther's graduation from nursing school.


Graduation Day Pinning Ceremony - May 12th 2007

During the C section, the nurse (Tammy - who Esther did a preceptorship with a few weeks earlier) was cleaning up our baby and said "Didn't you tell me that you were having a girl? This here's a boy!" My heart leaped, knowing that it was Lucas - and that God's hand really was in this. I mean, we knew God was in this from the beginning, but now we really knew. Esther and I had never settled on a girl's name, but as we wheeled Esther and our new baby back into the room, we proudly announced to stunned family and friends that "his name is Lucas".

Lucas' head size was much larger than we expected at birth - because of the excess fluid, and so the day after his birth we were whisked away to the NICU at St Louis Children's hospital so that he could have a shunt surgically installed. Lucas spent a week at the NICU, and Esther and I slept in a room on the same floor as him during the entire time. The shunt has done it's job well, and Lucas's head has shrunk down about 2 inches, and his brain has expanded to it's normal size now that the pressure has been relieved in his head.

At Children's Hospital, Dr Leonard (his neurosurgeon) told us that he wasn't ready to say that Lucas had holoprosencephaly (HPE), because the fluid was preventing them from getting a clear picture of his brain. The MRI yesterday gave Dr Leonard a clear picture, and it was clear from those pictures that he does in fact have holoprosencephaly.

If you read about HPE on the web, you will see that it almost always comes along with facial deformities and asymetrical features. This is not the case with Lucas. Also, Lucas is not exhibiting any of the motor skill delays that are common with the disorder. He actually is advanced for his age in motor skills, and is coming along nicely in his head movement and vocalizations. So - we know that his brain is not normal, but we don't know what this means for his life, since each case of HPE is unique. We have no doubts that God has great plans for him, and that Lucas is a wonderful, precious gift and we couldn't ask for a better son. We have the highest hopes that Lucas will live a normal, joyful life, and we will continue to update you all on how he continues to wow the doctors.

MRI tomorrow

Hi there.

Tomorrow we bring Lucas into Children's Hospital for his MRI. They want to take a look at his brain to see how well the shunt is doing at relieving the pressure. Their hope is that with the pressure relief that the shunt has provided over the past 7 weeks, they will get a really clear picture of his brain to make sure that everything is fine. Esther and I are confident that he is fine, but Lucas does need to go under general anesthesia - which we're a little nervous about. We need to get him to the hospital at 6:30 am, and he can't eat anything after 3:30am, so it's bound to be a rough morning. For those of you who pray, please pray that Lucas would not have any complications with the anesthesia and that his eating schedule would work out so that he doesn't get to the hospital a screaming hungry boy.

Sorry we haven't posted any new videos in a while. I'll try to get one or two up this week.

Thanks