Happy Halloween

Here's our sweet little pumpkin! (Not everything has to be about brain cysts and hydrocephalus, right?!)

Surgery #2

"Operating on a child that looks this good is always a difficult decision to make".

We are big fans of Dr. Sandberg. He's been Kyle's surgeon since before he was born and has always been straightforward and honest with us. So when he told us that the decision to operate again was a difficult one but that the risk of waiting now outweighed the risk of a second operation, we knew it was time. It was a hard choice to make but we believe that it is the right one. 

Kyle's second surgery has been tentatively scheduled for early Friday afternoon. His MRI on Tuesday showed more cyst growth and enlarged ventricles (the fluid filled spaces in the brain). The goal of this surgery is to better connect the cyst(s) to the ventricular system of the brain and to coagulate parts of the choroid plexus- the part of the brain that produces spinal fluid- so that he doesn't produce as much fluid. The surgery is very similar to his first. It will be endoscopic and preformed through a small burr hole in the back of his skull. His recovery time in the hospital should be a brief one or two night PICU stay and we are hopeful his recovery will be swift and complete. 

Please pray for the following-

* That the surgery is successful and eliminates the need for a shunt.

* Kyle's medical team. Specifically rest and steady hands for his surgeon. 

* That Kyle's discomfort is minimal and that he recovers quickly and completely. 

* Zero post-op complications. Pray for zero infections and against a subdural effusion/hemorrhage. 

Thank you!!!!

17 Evening, morning and noon
    I cry out in distress,
    and he hears my voice.

Psalm 55:17

Miracle Baby

I usually dread seeing Kyle's neurologist. She hasn't always been very positive about Kyle's long term prognosis. She told us before he was born that he'd be at high risk for a multitude of issues, mainly epilepsy (possibly retractable- meaning not able to control with medication), cerebral palsy and developmental delays. She said it was possible that he'd have milestones that he'd never hit. That he could be severely intellectually disabled and unable to ever care for himself. He might not talk. He might not hear or see. 

Today was different. She said seeing him was the highlight of her day. That she'd never match his MRI scans to his current abilities. That he is a "miracle baby". 

We agree. "Kyle" in Yiddish means "victorious". We didn't know this when we chose his name but it's something we've clung to since first receiving his diagnosis at 28 weeks pregnant. Our baby boy would be victorious. His life mattered. No matter what. 

On Tuesday he will have a MRI and MRA. The MRA is to look for any recent ischemic events. Three weeks ago, I found Kyle in his swing looking like this...

Only half of his face seemed to be working. We took him to the ER and the asymmetry had already faded away. He was sent home. Today the neurologist noticed that his left leg is smaller than his right and he doesn't seem to be using his left side as effectively as his right. He can freely grab objects with his right hand, but has problems grasping things he wants in his left hand. It is VERY unlikely he had an event, but we are looking anyway. And she wants the 23 hour eeg to rule out seizure activity. 

Thankfully, we've managed to stay out of the ER since our last neurosurgery visit. We see the surgeon again on Tuesday and will be celebrating this feat. I feel like Kyle deserves a medal, but "miracle baby" will certainly do! 

What's next:

-MRI/MRA/Neurosurgery appt Oct 28

-23 hour EEG to be scheduled 

Happy October!

Baby Kyle is doing great! He's a happy little boy. He can roll both directions and sit using his hands for support. His physical therapist even said she thinks he is trying to shuffle forward when he is on his tummy! He will be six months old next week and we can hardly believe it. He is such a JOY. 

He LOVES the neurosurgeon's office. It's a good thing since we've been seeing so much of him lately! Last week was an eventful week. Kyle spent another night in the hospital for observation with vomiting. Thankfully, he improved and was able to come home. His MRI though showed an increase in both cyst and ventricle (fluid filled spaces in the brain) size but a decrease in the amount of fluid/blood surrounding the brain. 

A lofty goal! 

He had a follow up appointment with the surgeon yesterday and we discussed his surgical options, if surgery becomes necessary. Kyle's hydrocephalus is a little more complicated than the typical case and a shunt simply isn't a good option for him. So, our next step would be a second surgery similar to the first, where the surgeon will try to accomplish what he was unable to accomplish the first time by going in at a different angle and from a different position. 

Our hope is that Kyle won't need any surgery. If he does, we hope and pray the second surgery is a success and that it will eliminate his need for a shunt. His next MRI is in three weeks and we are hopeful that he will have a restful and uneventful break between appointments.

Thank you for your continued support and prayers. Kyle is a well loved little boy!

What's next-

-Neurology follow up Oct 22

-MRI and Neurosurgery follow up Oct 28

-Continued physical therapy bi-weekly