Thursday, December 10, 2015

We are Weak, but HE is Strong!

This sweet boy was 19 days seizure free yesterday!

However, last night, he had one, making today a bit difficult. I am so thankful God hasn't called us to be strong and that He understands us in the moments of our weakness.

I will continue to praise God for His blessings!

Saturday, December 5, 2015

Last Night...

When Samuel went to sleep last night, it was quick. He had complained about being dizzy so I wondered what the night would hold. I went to my room, trying to calm my thoughts, and was typing his symptom into my calendar when I realized he was 14 days seizure free. How my heart filled with praise!

It may not seem like much, but we haven't had to wake in the middle of the night to the sound of him having a seizure for 14 days. Sure, the possibility is there every evening (and day truthfully), but to our knowledge, Samuel has had two weeks free of this.

We don't know what lies ahead or what God has in store, but we're thanking Him in this moment for rescuing our son for this brief time... for clearing his head, for freeing his body, and for giving us peace. Last night was a blessing I don't take lightly.

Tuesday, December 1, 2015


As I sit beside Samuel in this hospital bed while the last few hours of his epilepsy monitoring come to an end, I cannot help but feel grateful. He has gone 10 days without an episode, and 3 of those 10 days were in the hospital without medication preventing it. I realize that these facts alone are reasons enough to praise God!

The past year has been a difficult yet hopeful one for Samuel. In January, he began having daily headaches. By March, he was diagnosed with a chiari brain malformation and a pineal cyst. Not long after that, his neurologist confirmed he was having migraines. He has been on different medications, and the side effects have been intense at times. In September, he began having these episodes that were later diagnosed as seizures in October.

However, despite all of this, he began Kindergarten (homeschooling). He learned how to ride a bike. He played his first season of soccer. He knows how to add and subtract. He enjoys writing letters for others and putting them in envelopes. He is a giver and has taken on the joy of blessing others with this. He has learned to save his money and keeps a wallet. He knows sight words and is reading. He loves church, singing, and praying.

I had hoped the doctors would get more information from this hospital stay and that they could tell us exactly what was going on. I wanted to wake in the middle of the night last night, as we have so many times over the last 3 months, to the sound of him needing me. I needed more so they could help us help him.

But God...

In the midst of my wishfulness, God tells me that I already have all that I need. He is the Creator of this unique, precious boy, and He knows exactly what is going on inside of him. He knows when he is waking in the middle of the night, and God is there before my husband and I can rush to his bedside. He tells me that wavy lines aren't the answers I need today. He reminds me to trust that He is in control. He already knew that the doctors wouldn't get what they needed because He has something else in store. What that is may not be for me to know right now, and I have to realize that God Himself is enough.

Whatever you may be facing today, do not let what you want get in the way of what God has planned. Last night, I was selfishly hoping for an episode. However, as I look in the smiling face of my boy this morning, I see that God wanted to bless us with ten days of being seizure free! God's ways are good, and He knows what is best. Allowing Him to have His way makes room for hope. That is what I feel this morning more than anything else.

Monday, November 30, 2015

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.

Saturday, November 28, 2015

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.

Friday, November 27, 2015

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.

Friday, October 23, 2015

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

Saturday, October 3, 2015

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.

Thursday, August 13, 2015

Our Homeschool Notebooks

I mentioned our "Homeschool Notebooks" in a previous post.  They are new to us, and yes, I totally made that name up.

I really wanted to teach each of the boys to work independently this year.  I saw this idea on Pinterest and knew I had to incorporate it somehow.  Doing so with Elias would be quite difficult, so I really had to work on his Homeschool Notebook.  Each child has a binder with their individual work in it.

What helps them work independently is their own Assignment Page, and they mark off their assignments as they finish them with a dry erase marker.  I have written on them with a sharpie and inserted the page into a page protector.  

Daniel and Samuel have sight word work in theirs.  Each week, they are working on the pre-primer, primer, and 1st grade Dolch sight word lists, and I have printables for them to do.  They reinforce what they are learning as they visualize their words over and over.  I LOVE seeing them do these, and I actually let them choose these online out of a few choices.  These are from a site I love as a former educator!  I am also having them do sight word sheets I created as a teacher.  :)

Elias' notebook/binder is quite different!  It's more interactive, and he uses his the entire time we are in the homeschool room. It's in three sections:  shapes, colors, and letters.  I found different printables online that were free or inexpensive to print at home, then I divided them into sections using labeled tab dividers.  I will say that I know how rough and tough Elias is, so I opted to print on nice, thicker paper - not cardstock - but it is of a thicker quality.

Elias does one page out of each section a day.  I am also coming up with other ideas and activities for him from my days of teaching Pre-K and Kindergarten to supplement.  I do believe I will add to the binder because he LOVES it.  

Here are the printables I use and found online.  I am so thankful and blessed by the women who created these!  What a blessing they have been thus far!  

Do a Dot Shapes Set 1 by Honey Homeschool Mama (small cost - totally worth it)
Shape Coloring Pages by Cassie @ 3Dinosaurs (not shown)
Shape Trace & Color by Cassie @ 3Dinosaurs (not shown)

Color Dot Marker Words by Cassie @ 3Dinosaurs 
Color Coloring Pages by Cassie @ 3Dinosaurs 
Color Word Playdough Mats by Cassie @ 3Dinosaurs
Color Preschool Printables simplified for Elias but created by Jenna Johnson

ABC Do-a-Dot Marker Printables by Homeschool Creations
A-Z Do-a-Dot Worksheets by Confessions of a Homeschooler
ABC Coloring Pages by Cassie @ 3Dinosaurs 
ABC Letter Find by Cassie @ 3Dinosaurs
ABC Tracing & Dot Find by Cassie @ 3Dinosaurs

If you have any questions at all, please contact me.  I can take NO credit for this myself.  


Homeschool 2015-2016 Curriculum

We've begun a new school year in our little classroom.  God had put it on our hearts during our oldest son's Kindergarten year that we needed to make changes regarding our family's education plans.  Just a few weeks after getting this impression, our middle son began having headaches, and things drastically changed for us.  It is clear now that though we thought we were making changes for our first born, God was leading us to do what was best for us all.  

We are now homeschooling, and though the days are not always easy, we fully believe the Lord has given us the direction we need for now.  With that in mind, here are the curriculum choices we have prayerfully made for our 2015-2016 year:

Daniel (Age 6) - 1st Grade

He excels in critical thinking, fine motor skills, and math.  We will focus on his reading and phonics this year because he does not enjoy them as much.  He is extremely energetic, active, and social!

Bible:  The Big Picture Interactive Story Bible
Math:  Saxon 1
Handwriting:  A Reason for Handwriting A
Reading:  The Ordinary Parent's Guide to Teaching Reading (Lesson 50 and on)
Phonics:  Explode the Code 1 1/2, 2, and 2 1/2 (we did book 1 1/2 this through the summer; he's quickly finishing it up)
Spelling:  A Reason for Spelling A
Geography:  Evan-Moor Beginning Geography (Tuesday and Thursday)
Homeschool Notebook*:  Sight Words

Samuel (Age 5) - Kindergarten

He loves learning and asks every morning for us to hurry up to get to the classroom.  We will focus on his math and phonics this year.  He is extremely eager to learn and finishes his subjects in 2 hours despite how much I teach or extra I give him to work on!

Bible:  The Big Picture Interactive Story Bible
Math:  Saxon K
Handwriting:  A Reason for Handwriting K
Reading:  The Ordinary Parent's Guide to Teaching Reading (Lesson 15 and on)
Phonics:  Explode the Code 1 and 1 1/2
Geography:  Evan-Moor Beginning Geography (Tuesday and Thursday)
Homeschool Notebook*:  Sight Words

Elias (Age 3) - Tot School

He excels in being busy and making messes.  We will focus on his fine motor skills, ability to sit, shapes, colors, writing his name, and starting to see and recognize some of the letters (mainly in his name).  He loves to cut, use markers, and all things involving paint!

Bible:  The Big Picture Interactive Story Bible
Math:  Shapes, Colors
Reading:  Alphabet
Handwriting:  His Name 
Homeschool Notebook*: Includes Shape, Color, and Letter Work in ONE PLACE

*I will explain this in a different post!

Thursday, June 25, 2015

Daddy's Birthday

Brian turned 35 today, and we celebrated big. The boys made him cards, a video, a painting, and we got him a photo of our family that his sister Kim took on canvas. My dad came this afternoon and surprised him with a new blower! We went to dinner with our family, who gave him such sweet gifts and had a great night. We are incredibly grateful for his big love for us!