6 month old hydrocepahlus brain scan

An Astounded Neurosurgeon Follows Up with L1 Baby

l1 , xlinked hydrocephalus, x-linked, hydroceaphlus infant, congenital hydrocephalus
China Grove China Grove!! I’m telling you; Noah has done it again! My little Miracle on Mainstreet! Thursday morning bright and early I packed the kids up in the car and off we headed to the next biggest city nearby for a follow up with the neurosurgeon. Sometimes, I get aggravated that a simple fix isn’t simple for us, a local doctor isn’t good enough for us, and a 20 minute ride almost always turns into a ride over than an hour. But, that’s the life …. and it’s a good enough life for me!

My mom arrived and off we headed. Kara was stoked to be getting to go see Abbey, Noah’s PA. Abbey always remembers Kara, and always includes her. This time was no different. Abbey asked Kara as soon as we got there if we were heading to the aquarium after this visit, too! Of course we were! To see fish and sharks! I think my mom was even excited Abbey remembered Kara!

We arrived and were immediately whisked back to the MRI machine. I got permission to snap a photo of Noah Bear in the machine next time at 9 months old; I didn’t want to take my phone this time and have my memory erased! Then we headed into a patient care room and played games with Kara with some really cool dollar store finds {{I could make an entire blog on those alone!}}.

Abbey came in.

“Noah! Heeeeeeeeeeeeeeeeeeey! How is this possible! You are so big! Look at you! You are adorable! Well, all I have is good news for mom! You look great! I can’t believe it! You are doing so awesome!.”

And then the small chat, fun happiness began. I think we threw ourselves a little party, even! Next time, I’m gonna have to remember to let Kara take Abbey a cup cake for Abbey’s birthday! I promise you, she is worth it. So, we went to x-ray to check the dial of the shunt and placement, and then I requested to view the scans.

So, lets see what they had to say. Lets compare birth to now:


Okay, so… on the right, you have an ultrasound from 6 days old – 4 days after shunt placement. In the right image, BLACK is WATER, and white is brain. Well, somewhat. See the two large black circles? All that is water. See the distinct “outlines” around the water (not the super thick stuff around the whole bottom half of the image). That outline is all the brain that was visable. Not a lot. Prior to shunting, no brain at all was visable and doctors said he probably had hydroancephaly – no brain. Bullcrap.

The left side is an MRI of yesterday’s brain. In this case, the WHITE is WATER (not the black) and the grey stuff that looks like squiggles of intestine/brainmatter/whatever is the brain. So, your thinking not too fair to compare those since one is an MRI and the other is an Ultrasound…. right?

Take a look at this!

The image on the right is 3 months old. Image on the left is 6 months old, yesterday. In these, they are MRI’s. The Dark squiggly is brain. The white/light grey is water. I *know* every single one of you looking at this image can tell a difference. Just look at it! There is so much beauty here!

  1. Look at the mouse pointer. See that line? Look at the same spot on the left. THICKER!
  2. Look just below that pointer. See white stuff? Now long on the left? There’s two HUGE black circles – BRAIN!
  3. Look in the white on the right? See how its light grey? Look at the same spots on the left. See how much darker that grey is? Its brain under the water!!!!
  4. Look at the dotted line on the left? Now look at the same spot on the right. See how much wider it is on the right than the left? BRAIN MATTER is starting to show!!!!

In fact, I even see a face on the left …. its’ Noah’s brain laughing at those doctors’ faces for ever doubting my boy! ❤ ❤ Jesus says He’s working miracles in Noah! ❤ Every. Single. Day.

Just for laughs, here’s a picture of the dial in Noah’s head. A little button and magnet that controls the fluid:


So, when we go back at 9 months, we will try to turn the shunt down a bit and see if we can make the fluid flow out faster. We can’t allow the fluid to rush out too quickly, or we risk flooding the space on the outside of his skull, which isn’t acceptable either. So for now, we continue working with Noah, doing five therapies a day, and pushing him to be all he can be ❤


For those of you waiting for an update on the swelling… Noah’s had four blood draws this past month to try to grab a trend. All results have been within normal limits. However, we notice a change in glucose and sodium during swelling. His pediatrician and I have decided for now, assuming his body continues to regulate the swelling within 48 hours and he does not experience pitting edema, to allow his body to regulate. In adults, fluid and sodium intake can often be monitored and restricted to accommodate for Syndrome of Inappropriate Anti Diuretic Hormone. For Noah, he is a breast fed baby who’s entire diet is fluid at 6-months old. At this point, I do not want to begin severe medication regiments which may later teach his body he doesn’t have to regulate himself because medications will do it for him. For the time being, we will log in a notebook each episode, and he will be closely monitored during swelling to ensure clear airways.

Thank you for all of your thoughts and prayers. Each one of you are equally valuable to our family!




Noah’s Story
What is Wrong with Our Baby Boy?
Baby Boy Eagle Has A Name! He’s Born!
My Two Day Old Warrior
Totally In Love, Noah’s Improving at 5 days old
Noah’s Moving On Up
There’s Hope In Progressive
The First of the Setbacks
Back on the Road to Recovery
Slow and Steady Wins the Race
Steps Toward Home
Noah’s First Week Home
The Therapy Journey has Begun
7 Weeks Alive
Noah is Enabled; never DISabled
Noah’s Brain Development
My Little Family
L1 & The Pediatric Ophthalmologist
Really, What is L1?
A Frantic Day in the Life of: an L1 Family
An Astounded Neurosurgeon Follows Up with L1 Baby (this post)




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