Waiting on You

Last night (Saturday), it was close to midnight before Samuel fell asleep, and I prayed over him that God would watch over and protect him as he slept. It's a strange thing... wanting your child to be safe from harm but waiting for him to have an episode.

When the first neurologist arrived around six something this morning (Sunday), I was reminded that God's plan was no seizure on night one of epilepsy monitoring (EMU). Samuel had slept well, and when the team of neurologists came an hour later, they asked questions concerning his episodes and how they normally present themselves. The attending epileptologist was grateful for my detailed descriptions and said that Samuel's sound very indicative of seizures.  She decided he would not take his medication for a second day in a row to induce seizure activity. They said we would just keep waiting.

Samuel had a long day, though. He became more frustrated and bothered by the gauze and wires, saying they itched. He played app after app, but he was just so exhausted, he wasn't too thrilled doing anything. He got a big surprise when his Aunt Jessica and Mimi came and brought a bag of goodies! He was so tired after they left that he fell asleep. While he was sleeping, another visitor came.  Daddy came and brought more cookies.

However, Samuel has been quite the tough one to break because he ignores most anyone who walks in the room - all of the nurses and doctors! He has not enjoyed getting his vitals taken or having to take his antibiotic for a cough he has / had prior to arriving. He has not talked to his nurses at all!  

Tonight ( Sunday still ), we rented a movie from the Vanderbilt DVD kiosk. The nurses told us it was like the uncool cousin version of Redbox or Netflix. They gave us a card, almost like a library or gift card, that is ours while we are here, and we can rent one movie at a time with it for free. We watched 2 tonight. Samuel thought it was great! 

It seems so simple to wait. Wait until he has an episode. Wait until we get what we need. Wait until he has a seizure then press the black button. I think that I am starting to realize that it isn't about the wait as much as it is about my surrender. I have sat in this room looking at Samuel thinking the reason we are here just cannot be possible, yet I have prayed to the Lord to protect him at least a dozen times since yesterday. Lord, if it be Your will. No matter what happens here or at home with Samuel, God is and will be exactly what we need and have been waiting for. So, tonight, as our sweet boy sleeps, if God has chosen this path for us, then I will wait.

Pictures include: waking up, smiling with Mimi, grins with Aunt Jessica, movie with Mom, napping, cookies with Daddy, and bedtime.

Falling into Place

As we drove to Vanderbilt this afternoon, Samuel was quiet. I had prepared him. Brian had prayed over him. Daniel was genuinely concerned about him. Elias had hugged him. However, the silence in the van was deafening, and I was worried that maybe he was worried.

He wasn't, he assured me.

We were short on time, but we were listening to the radio when we were just over 10 minutes away when a familiar song came on. Tears filled my eyes, and I snapped a picture of my watch. I didn't want to forget when God reminded me to let go of worry and to let Him hold us. It was perfectly planned, if you ask me.

Here are the lyrics that comforted me:
"So, when you're on your knees and answers seem so far away. You're not alone, stop holding on and just be held. Your world's not falling apart; it's falling into place. I'm on the throne, stop holding on and just be held. Just be held, just be held."
Just Be Held by Casting Crowns

Tonight, we are settled in our room. He is flipping through channels with his sweet head wrapped in gauze. Earlier today, he had to sit incredibly still as a tech strategically placed the 21 EEG wires on his head, then glued and dried them. It was physically uncomfortable for me to watch because he was so nervous through each placement and drying. His eyes would fill with tears and he gripped my hands. I was so amazed at how this timid child bravely got through this. The tech wrapped the wires in gauze so that they wouldn't be exposed over the next few days.

He then had to endure a series of tests that induce seizures. He did fine, but he was soon complaining of a headache. It is still bothering him 2 hours later.

The rest of the day, he has eaten supper, played electronics, and walked around the room. He even had his favorite people visit! Daddy, Daniel, and Elias brought cookies that had an I ♡ U and a :) on them and actually had him balloons. It is going better than I could have imagined thus far, but of course, God's plan are far better than mine.

The doctor has decided not to give him his regular medication tonight in the anticipation of bringing about a seizure with the addition of today's testings. We are thankful to have nurses and doctors watching him during this process!

Pictures include: the moment God blessed me on the way to the hospital, two thumbs up to arriving in our room, Momma and Samuel, attaching the wires, gauze in place, Daddy and Samuel with the special cookies, brothers in the hospital bed, and sleepy buddy.

Being Held

The past season has been one of quiet anticipation. We have waited for doctors' calls and new medications to take effect. We have watched as the leaves changed and Samuel as well. Seizures came and vacations went. We spent special moments with loved ones and enjoyed times together we will never forget. We laughed a bunch, cried some, and were frustrated often.

I have to be honest, Samuel's migraines and seizures aren't "big" in comparison to what others are enduring in this life, but they have changed our way of living. We have to anticipate when the next one will be, when exactly in the night he will wake, how long it will last, and how he will feel the following day(s). His medication(s), though they have a positive effect on the length of his seizures, have had made some adverse changes in his personality (anger, aggression, etc). We are adjusting and being reminded that God is faithful in our times of fear.

To further his care, Samuel is being admitted to Vanderbilt Children's Hospital for epilepsy monitoring on Saturday, November 28th. We are being admitted for four days or more with the anticipation of catching a seizure under testing. This will provide specialists the information they need to know exactly which type of epilepsy he has and the best plan for him.

Please pray for comfort and peace over Samuel as it will be physically uncomfortable for him. We, of course, are somewhat anxious, but Jesus is holding us. He alone is our strength and HELP.

"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."  Isaiah 41:10

*Pictures include: swimming with Daddy in Pigeon Forge, holding Mom's hand after a seizure, and loosing his 1st tooth.

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

Slow Down

See, in this picture you don't see that I had been rushing them from the table and telling them to "Hurry up!" repeatedly so we wouldn't be late to meet our friends. However, they understand the importance of showing our friends how much they love them, and instead of hurrying, they paid careful attention to their drawings for them, even included pennies and rocks from their collections so that their friends could start their own. In my frustration, I almost missed it...

UNTIL, they said, "Just a minute, Momma."

In that moment, I realized what they were doing was important and had meaning, and I watched in complete awe as their friends (who didn't seem to mind that we were a few minutes late) were given their special gifts. They were so excited to get them, and the boys were thrilled to give their things away! My heart was so full.

Oh, me (and mommas just like me)... it's only a minute, and there will never be another like it. Don't miss it.