One Year Ago

It was one year ago today that I held my 4 year old in a recovery room waiting for him to awake from anesthesia from his first MRI. It was eerily quiet, and I remember as I held him feeling so peaceful in that moment. He had suffered for over a month and a half from awful headaches, sickening nausea, frustrating tingling in his hands, and the worst numbness in his legs and feet leaving him unable to stand at moments. Yet, in that room, with the steady beeps from hospital machines and nurses footsteps, I felt a calm.

I didn't know, in that moment, that he would be diagnosed with a brain malformation or that he had a cyst on his pineal gland in his brain as well. I didn't realize that he would need to have further MRIs throughout the week and his life to check on the size or growth of both. I couldn't foresee that he would need a neurologist or a neurosurgeon and that we would need to speak and visit one or both of them every few weeks/months. I couldn't have guessed that he would need medication to control migraines and his symptoms or that, when not well controlled, they can cause other problems within the brain as they did. I had no idea, in that moment, that he would be stricken with seizures. I couldn't imagine then how helpless he would seem as the medicine tried to help actually caused terrible reactions to his body. I wasn't picturing in that room what might be ahead for him or us... I only felt peace.

The past year has been one of the toughest of my life, but as I look back to the day before Samuel was diagnosed, I am overwhelmed by the fact that God wanted me to feel His presence. He didn't want me to look ahead. He didn't want me to worry or try to figure it all out ahead of time as He already had. He wanted me to be still, hold our son, and rest in His perfect peace.

I have struggled with resting lately. I have been saddened by Samuel's situation and how he's hurting, but I was reminded by a friend that it's possible I am looking back today as a reminder to rest in that peace all over again. God knew what was coming, yet He provided the calmness I needed that day on March 9, 2015, to hold my resting son and to prepare my heart for what was to come. Peace. It's what I must choose one year later... for my son AND for me.

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!

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.

Hope

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.

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

Opthamology Visit

We had waited for what seemed like ages for this appointment. When the week was finally upon us, a dear friend asked who we were seeing and I wasn't quite sure. She said she hoped Samuel was seeing a certain opthamologist because she knows his family well and he is fantastic. I came home to discover that he was who we were scheduled to see the next day!

Samuel and I headed to Vanderbilt on Tuesday, May 12th, for his appointment. They began with several tests, checking his vision. I was so impressed at how much he recognized at such a distance! They then started with a PIP 24 palette test, checking his ability to recognize colors. I was amazed at this point. Not only could he distinguish between the colors, he was recognizing numbers that are higher than we have learned.

It was here that the assistant said that most children with optic swelling have difficulty distinguishing colors and have a hard time with that particular test. Samuel did not!

We then had to have drops put into his eyes for dilation. It was awful, but we finished and waited until they were ready for the next check of his eyes. Twenty minutes later, the fantastic doctor came in! He checked Samuel and made his diagnosis very clear...

Samuel does NOT have papillodema (optic swelling)!

Praising God that this is all in HIS hands!

He was asked to wear some cool sunglasses home, but he wasn't keen on the idea... until he realized how bright it was outside!  All in all, it was a great day, and we are incredibly grateful for all of the prayers being lifted on Samuel's behalf.

* We will revisit the neurosurgeon in June, but until then, we are doing okay. 

Yesterday

Written April 29, 2015

Yesterday was harder than I want to admit. It's probably going to be a day I will always remember. Samuel struggled, and as his mom, I will admit that I struggled too. I cried out to God (and to Brian) a lot more yesterday than I have before, and I made more phone calls to doctors than I have in the past.

It seemed like a normal day when we woke yesterday. We went to the homeschool/classroom, but Samuel was moving very slowly with his blanket in tow. His eyes were dark, and it was almost as if he hadn't slept 9 hours the night before. This child of mine who loves school and learning didn't go to his green desk; instead, he went to the corner of the room, laid down in the floor, and put his blanket over his head.

The rest of the day went slowly. It involved a lot of falling asleep, waking up only to get sick, moaning, very little speaking, and falling asleep again. Yesterday... it was scary for me. I waited on phone calls from the neurologist and from our pediatrician, but I couldn't help but notice how tired and how different he seemed from just a few days before.

In God's sovereign grace and provision, He cared for Samuel yesterday when I was frightened and unsure of what to do. He seemed to lifeless to me, but God was sustaining him and knew exactly what to do when I didn't. How grateful I am for my Heavenly Father! His care is so much greater than mine for both me and the children that He's entrusted me with.

Today... oh, TODAY.

Today, Samuel is filled with laughter and smiles, and he is gladly sitting on the couch, doing his school work because he realized he missed it yesterday. I am typing this through tears of thankfulness because joy truly does come in the morning. Friends of ours are going through trials that I cannot fathom. Their children are facing battles that shouldn't be comprehended by little ones at their ages. 

Yet, I see God. I see him working it all together for good. Romans 8:28. Even through the hard, disappointing, sad, unfair situations, I see that God has a greater purpose that I cannot truly understand at this time. I have to be willing to trust His plans and know that His will is going to be done in each of them... because yesterday, oh yesterday, I had no control. God had it all.

I don't know what tomorrow holds or what next week brings, but I know God already has it planned. I want to be willing and able to trust Him whatever it looks like...

The doctors believe Samuel was having an adverse reaction to his new medication. The dosage will be lowered and monitored for a short time.

Perspective

I had a wise man today tell me that he just didn't believe it. He was going to choose to trust that God could heal Samuel's condition of Chiari, and he was going to pray to that end.

Do you know what I said?! I immediately told him it was unlikely. That the same MAN (Jesus) who made the lame walk, blind see, and dead rise couldn't reverse or heal this malformation within my child's head?! Standing there with him, it was easy to state medical facts that I have researched or been told, but my faith perspective wasn't coming into focus.

Oh, but he made me see it so differently. I don't know what will happen, but I sure want to change my perspective in light of this conversation. It is so easy to become focused on the difficulties of this condition and the symptoms we are facing and lose sight of WHO is in control of it. God does not change. He does not love us any less. He wants us to cling to Him that much more. I believe that this will be what God decides it to be, and I pray Samuel's Chiari story (and whatever else he is diagnosed with) will be used to bring the Lord glory.

Perspective... it changes everything, and lately, I am sorry to say I have been looking at links online instead of facts in THE BOOK - the holy, inspired Word of God. My friend today gave me perspective, and I really needed to hear it.

Rest for the Weary

We met with Samuel's neurologist today for the first time. She listened intently to our concerns, asked many questions, went over his MRI scans and results, and spent a great deal of time with us. She had a way of explaining things that brought rest to this weary mom.

She did not discount the fact that Samuel does have a 8 mm Chiari Malformation (CM), but she felt as though his headaches were triggered by anxiety and a sudden life change in January when they first began. At that time, Elias had a big surgery (adenoids and tonsils removed), I left my pre-K teaching job, and we began homeschooling.

After learning more about him and his history, the neurologist diagnosed Samuel with migraines. Many of his symptoms could be attributed to Chiari, but they are more so migraine-related due to stress and fear of being in pain. She said it isn't uncommon for patients with one neurological issue to end up with another, which happens to be the case for Samuel.

Right now, the neurologist believes we can treat many of his symptoms with a daily preventative. We are praying it helps and that he can both tolerate it and begin to rest well again.

We still have to meet with opthamology on May 12th to make sure his eyes are fine, but the neurologist said it shouldn't change her course of action. Until then, we will continue to monitor his symptoms, begin new medication, and wait patiently on the Lord.

Oh, but He's already here... I felt His presence today when I began to feel overwhelmed in describing all of Samuel's setbacks from fine motor skills, losing independence, and lack of sleep. I knew He was there when I began to cry explaining how difficult it had been lately to get Samuel to eat. I realized He was there when I asked if we could see Samuel's MRI scans...

and when I saw our sweet Samuel's button nose on that computer screen and the neurologist pointed to his Chiari, do you know what I saw?!

I saw the hand of God. It was so clear to me. That "malformation" was nothing like I had pictured in my mind. It's there, obviously, but it wasn't as overwhelming as I expected it to be. I felt peaceful sitting there today because I knew God was already there. I was finally ready to fall into His arms and let Him show Himself strong.

With God, All Things are Possible

When we met with Samuel's neurosurgeon a little over three weeks ago, I can honestly say I (Jenna) immediately felt as though we were facing a battle that was impossible. It felt so much bigger than us. I felt small and insignificant. I realized quickly that Samuel's diagnosis was completely out of my hands. As a mom, that was a tough realization.

We were told Samuel needed to see an opthamologist and a neurologist, but that it would be at least six weeks before we could get into neurology.

However, I followed the instructions given by the specialist, constantly journaling his symptoms, and doing my best to wait patiently on the nurse to call us with our son's next necessary appointments despite his symptoms increasing.

Days became a week. One week became two. Two weeks have now become a little over three. Yesterday, we got the call we never expected.

Samuel will be seen this Thursday, April 16th, by neurology!

So many days I have felt as though the struggle is impossible and we won't make it to the next point, but God keeps showing up and reminding me that this is completely out of my hands. It is in His. The neurosurgeon (NS) said it was unlikely to get into neurology in 6 weeks' time, but with God, it is.

God makes the impossible possible. I want to cling to that hope this week! He knows what is ahead for our Samuel, and He made a way through an impossible way to have him seen this week.

Please pray that we can get a better understanding of Samuel's diagnosis and symptoms at his appointment.

A Simple Prayer

Since Samuel's Chiari diagnosis, we have been asked quite often about how he is doing, and we cannot thank you enough for that. We were never carrying the burden alone, but once we shared the news, your prayers, texts, and support have meant so much to our family. We know that God has blessed us with a large "family" that trusts in His power to provide strength and grace.

We are still waiting to hear on when Samuel will see an opthamologist and a neurologist.  Until then and for five more weeks, I am logging his symptoms.  As of yet, there aren't any new ones.  His headaches do seem to occur less often, but when they happen, we aren't able to control them that well with ibuprofen or tylenol.  He has trouble falling asleep and wakes some.  

Headaches really bother Samuel.  It's the other symptoms that are hard for me.  They vary and are difficult to explain to him.  I really have had to rest in prayer and scripture and find such comfort in Proverbs 3:5 and Zephaniah 3:17.  Samuel and I repeat them back and forth to each other.  I pray outloud over him so he hears what I am asking God to do for him.  There's such peace in knowing God cares for us.

I will be honest though.  There are nights when he is hurting, we are tired, and rest isn't coming.  Frustration kicks in once pain doesn't reside.  He gets tears in his eyes and I in mine.  It's in those times that I cry out to Jesus. 

Tonight, I heard my sweet boy pray to Jesus for HIMSELF.  Samuel always thinks to pray for others.  He wasn't crying, but he was asking God to help him in a simple, yet profound way.  I, as Mommy, don't want to forget this moment, because Samuel was hurting, but instead of turning to me or to medicine, he realized WHO to turn to for help.

God, thank You for our church family and for Addy, Brooke, Bryce, Grayson, and Michael.  Oh, and Brother David.  Help me to feel better when You can.  Thank you for Jessica, Mimi, and Grandpa.  For Mommy and Daddy being married for 8 days, no, she said 8 years.  For this beautiful day so we could go to the park. 

In Jesus' name, Amen

God, remind me to call on You and trust that You will answer when You can.

Miraculous Mammoth Cave

Following Monday's MRI results, we felt both relieved and ready to face what is to come.  We knew is wasn't going to be easy, but to be honest, we were thankful that the neurosurgeon was thorough and detailed.  His requiring of 6 more weeks of symptom logging really discouraged me at the moment of the appointment, but as the day progressed, I (Jenna) was able to see how God was gracious in that.  He was supplying me the ability to be patient with both Him and our little boy.

In the midst of this appointment, God had ordained it that some of our dearest friends would be in town, a couple from Alaska and a family from Missouri.  These precious friends have prayed over us and supported us in so many ways, and they are brothers and sisters in the faith.  Having them here in Tennessee AT THE SAME TIME and during the time of Samuel's appointment was, without any doubt, orchestrated by the Lord.  The Calhouns, from Missouri, had asked if we wanted to join them on a trip to Mammoth Cave following Samuel's results if all went well, and praise God, it did.

Going to Mammoth Cave with 5 children under the age of 5 shouldn't be called miraculous unless you survive...  which we did and REALLY enjoyed it!  :)  I had my doubts in all honesty about whether or not Samuel could handle the rigorous journey into the cave.  Our tour guide was very honest about that beforehand...  I felt how red my face was becoming by the second.  Nerves were getting the best of me.  I feared that Samuel would get tired or his feet would get numb.  I was worried we couldn't carry him the 2 1/2 miles it would require to get down into and back up out of the cave.  I also was thinking about the other 4 little ones we had with us...  oh, wow, that's a lot of littles.

However, the further we traveled into the cave, the sweeter it became.  The children helped one another.  They really didn't complain all that often.  They held hands.  They laughed together.  They showed one another things they found or saw that amazed them.  My fear and worry turned into joy because they were demonstrating the true beauty of fellowship and friendship.  It was what our family needed that day.  If Samuel was hurting, he didn't mention it, and I truly believe it was because his buddies were right beside him every step of the way.  After weeks and months of pain and aches, it was a miracle in my eyes...

I walked away that day thankful for so many things:

• the Creator
• the ability to KNOW Him
• for results and a plan for our son
• friendships and fellowship
• saying yes when you aren't sure you want to
• for friends who know what you need 
• that our children have Godly friends
• laughter
• good days
• lack of symptoms
• miracles
• God-ordained days
• pizza :)
• for naps in the car
• trusting in the Unseen

There's just something about boys and rocks...

Our crew listening to the tour guide,

whose pre-cave pep talk 

made me a wee bit nervous.

Samuel and Jenna 

before heading into Mammoth Cave

Brian in the cave

Brian, Elias, and Daniel in the cave

(please notice Elias - 

he is making his new "smile for the camera"

face; he makes it ALL of the time now)

Big Buddies in the Dark

Holding Hands

This picture was impossible.

Well, not necessarily.

Only if we wanted all of them looking.

The Johnson family

Please respect that we are shepherding our children through the process of Samuel's diagnosis and ask that you refrain from speaking about it to them.

http://jennarjohnson.blogspot.com/2015/03/seeing-through-suffering.html

From This Point Forward...

We met with Samuel's neurosurgeon this morning after learning two weeks ago today that he has a Type 1 Chiari Malformation and a Pineal Gland Cyst.  His symptoms began in January with headaches and have since progressed this month to dizziness, nausea, tingling/numbness in hands and feet, itching, weakness, etc.  After a spine MRI on March 13th, we were to learn the results.

Thankfully, Samuel's spinal cord is normal and has not been affected by the malformation in his brain!  There has been no tethering or appearance of cysts.  

From this point, we will continue to monitor and journal his symptoms over the next six weeks to provide the neurosurgeon the data needed to determine whether a Chiari decompression surgery is needed in Samuel's case. 

In the meantime, we will visit a ophthalmologist and neurologist to see if they can provide further details or answers regarding Samuel's symptoms.  We will meet back with the neurosurgeon in six weeks.  Pray for continued grace through the daily struggle, adequate rest, and wisdom as we schedule appointments, log his symptoms, and determine whether surgery is needed at this time.

We will communicate from this point forward on this blog to keep you updated and provide you with specific ways on how you can pray for our family.

Please respect that we are shepherding our children through this process and ask that you refrain from speaking about it to them.

http://jennarjohnson.blogspot.com/2015/03/seeing-through-suffering.html

Seeing through Suffering

On Monday, March 9th, we took Samuel into Vanderbilt Children's Hospital for a sedated MRI of his brain.  He has been complaining of headaches since late January, and after experiencing other symptoms of nausea and dizziness, though these could signal a sinus infection or migraines, our pediatrician saw signs of neither.  After his exam, he felt it best that Samuel have this test done.  We were expecting the results but not as quickly as we received them.

On Tuesday, the next day, our pediatrician relayed the news that Samuel, in fact, had two abnormalities on his MRI.  We were informed of them and waited for our next call.

On Wednesday, we heard from the neurosurgeon nurse practitioner who explained the MRI results and gave more details about what we would do from this point.  We were to begin taking detailed notes of Samuel's symptoms, and he would be having an MRI of his spine two days later.  She also informed us that Samuel would meet with his neurosurgeon on Monday, March 23rd.  The seriousness of the situation began to sink in.

On Friday, Samuel had a sedated MRI of his spine.  He handled it all very well, considering how challenging it must be for a four-year-old to process.

Over the next week, we continued to journal Samuel's symptoms, and they progressively worsened. From dizziness and itching to tingling hands and numb feet, he went from what we thought was perfectly fine in December to having difficulty holding his toothbrush and using his scissors in March. There have been moments when he is unable to stand because his feet are numb and nights when he cannot sleep well because his head aches so fiercely.  He appears fine to most, but there were definite changes... and we saw them.

Do you know what we also saw?!

We saw God open doors miraculously.  We saw Him take care of our son when we felt unable at times.  We saw friends love us through calls, texts, and meals.  We saw the church pray, and we FELT it.  We saw the Word come to life.  We saw the importance of staying IN the Word and filling our hearts and minds with truth from it.  We saw how necessary it was to love each other.  We saw the need for being thankful for what we have.

It hasn't been easy, but I KNOW that God didn't make mistakes when He made this precious boy of ours.  The doctors say he has a Type 1 Chiari Malformation which is a brain defect, and he also has a cyst on his pineal gland.  Both of these are making it difficult for spinal fluid to flow freely and putting pressure on his brain.  Although we are, I know that God isn't surprised by these.  God still has a plan to receive glory through this situation with Samuel, and we are praying to that end.

We will communicate from this point forward on this blog to keep you updated and provide you with specific ways on how you can pray for our family.

Please respect that we are shepherding our children through this process and ask that you refrain from speaking about it to them.

Now, That's a Rash.

In the middle of March, out of nowhere in Sam's one afternoon, Samuel broke out in a rash on his face.  I have always known that his skin is extremely sensitive, so I've made our own detergent for years now.  However, while sitting at Sam's, his face continued to get welps all over his cheek.  By the time we gave him Benadryl and got home, we had a full on rash, all over his body.  It was on his chest and stomach, all over his face, and in the folds of his arms.  

The next day, symptoms continued, but didn't seem to bother him at all.  What really irritated him was all the attention this "rash" was getting him!

A few days and a doctor visit later, the welp rash subsided and these red spots came up all over his face.

... and they just kept spreading.

The next day, the red spots were more noticeable and a bit scary to him.

We saw the doctor again who wasn't really sure of the cause since it was essentially two separate rashes all together, maybe more.  He referred us to an allergy specialist.  While waiting for that appointment, we had another round of welps/welts.

Finally, we saw the allergist, and he refused to test Samuel because of his extremely sensitive skin.  He even did a "test" to see how Samuel's skin would react to being touched.  He took the tip of his pen (the pen was closed) and ran it down Samuel's arm.  Within seconds, his arm was red and had a long, large welp where the pen had been.  We were told to give Samuel two different medications daily to help this disorder, called dermatographism, and come back in two weeks to see if his skin improved.  I took him to Dairy Queen after being poked on at the allergist's office, expecting he'd want ice cream.  Instead, he chose a hot dog and was thrilled with his pick!

I also took him shopping with me, and let him choose one thing to take home with him.  Of all the things he could have chosen, this sweet kiddo chose marshmallows.  He fell asleep on the ride home.

We returned to the doctor after two weeks, and the skin was still easily irritated.  We're on a nasal spray and two medications daily now, but hoping that the doctor's diagnosis and dermatographism and low-grade sinusitis will continue to get better with time!