God is Here

Update on Samuel's Condition:

We respectfully ask that you do not mention his condition to our children.

It came as a shock when Samuel started waking in the middle of the night on September 16th.  The first time it happened, I was in the laundry room folding clothes when he walked over to me without saying a word.  He began to cry but never once looked at me.  The next time it occurred was 5 days later, except he didn't get up.  He sat up in the bed, screaming my name over and over.  I ran to his side, but he never looked at me.  He went right back to sleep.  The following time was the same way, different word/phrase, and Brian handled it just as I had, reassuring him that we were there, laying him down when he calmed, and watching him as he fell back to sleep.  The fourth time was very similar.  We began to assume his migraine medication was causing him to have night terrors, and we had called his neurologist with this concern.  She had scheduled an EEG for late October to check.

However, things changed on October 6th.  With Brian out of town for a conference, Samuel woke up screaming as usual.  I went running.  He said my name over and over, but he never looked at me or turned his head.  He was sitting straight up. His hands were cupped, but he was putting one on top of the other, over and over again.  Then, I noticed that his legs were stiff and toes were curled under, and I started to feel overwhelmed as he repeated my name.  I kept reminding him that, "Mommy is here.  Can you see Mom?  I am right here.  Are you hurting?  Are you okay?"  It felt like it went on for eternity.  I know at some point I started getting worried, and I thought back to the times in which we taught Samuel verses to relieve him from thinking about his migraines.  I was so focused on what was happening to Samuel that those verses weren't coming to mind, but this phrase was, "God is here."  So, I continued to tell Samuel, "Samuel, Mom is here, and God is here, do you know that?!  He's here."  Eventually, he stopped crying, and the intensity ceased.  He didn't lay down, though; he just slouched over.  I carefully laid him down and watched as he continued to breathe.  He never once looked at me.  

I texted a dear friend because Brian didn't answer, and she helped me to make the decision to call the on-call neurologist.  He instructed me to sleep near Samuel, watch his breathing, and call our neurologist the next morning.  

The next morning proved difficult for Samuel as his right leg was very weak.  I soon called the neurologist.  She got us an EEG for the next day (10/8).  Within a few days, we had the results.  His night terrors were actually seizures.  We had an MRI (10/14) a few days later to check his cyst and chiari which showed no significant changes.  He had a terrible time with the MRI and was incredibly nauseous following it.  Days following were fast, and the appointments and calls were many.  We've learned that it seems he is having partial, temporal lobe seizures, and because he's had many at this point, he is considered epileptic.  He has had to change medicine, but because after he changed it, he had two episodes in a row, we had to double the dosage.  He's doing better now and not had an episode/seizure since this past weekend when he had a few.  

We will need to know for sure what kind of seizures he is having by having an extended hospital stay at the end of November.  This gives the medication time to work and him time to prepare for the idea of staying.  Thankfully, the doctors do not believe his cyst and chiari are connected or causing the seizures.

I will be honest... this has not been easy on our family.  It's surprising to us, but it doesn't surprise the Lord.  It has taken our breath away and scared us.  A LOT.  Watching our child hurt and suffer without being able to help is hard.  It's reminded us to remain on our knees in prayer and to ask the Lord (and our family and friends) for HELP and for PRAYER as well.  We cannot do this on our own.  However, our God is big, and He is mighty to save and heal.  I sometimes think that we are stuck in this situation, but this is not the end.  It's only the beginning of the story on the way to God's glory. 

For I consider that the sufferings of this present time are not worth comparing with the glory that is going to be revealed to us. 

Romans 8:18

Please consider our Samuel when you pray.  We're clinging to the fact that God is here.

In His name,
The Johnson Family