Tuesday, March 31, 2015

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.

Saturday, March 28, 2015

Soccer Season Has Started!

It's Daniel's 3rd season of soccer!  He was very ready for his game despite having only had one practice due to the amount of snow we have had the earlier part of March.  His coach wasn't going to be able to attend the game and had asked Brian to stand in for him!  It was going to be a very exciting game, to say the least!

Daniel is in the black/white stripe jersey
in the center of the photo going for the ball.

Daniel is #9 in the white/black jersey,
running beside his sweet friend, Jordan!

Something was really funny!
Daniel is now easy to spot...
as the MOOSE.

He was playing goalie, 
then he running up to cheer on
his teammate as she ran the ball down 
the field to score!

Taking a break!

Good game!

Gracie and Daniel
Friends since they were toddlers

Jordan and Daniel
Friends since Pre-K

Daniel and Greyson

Daniel and Grandpa

Minister's School Week

It went by way too quickly.  Our fellow preachers/pastors/friends come from across the US to attend Minister's School in KY, and we make a week of it!  The memories we made this year are priceless.  I wish we could do it all again this week.

All dressed up for church!

Brother Brian and I pick on each other a lot!
I sure missed seeing his sweet wife!

Elias really wasn't sure about this horse.

Sweet Samuel on the playground

Boys marching around the playground, 
making up words to a song.

Daniel was making up an obstacle course
with make believe laser beams.

This is what our van looks like when 
you have to pile all of the children in one 
vehicle while the other vehicle gets a new tire.

We were tired... 
There was a LOT of playing, driving, then napping.

Sharing snacks and tired faces

Giving his girl a hug

Jenna and Karaley

Playing on the Old Union piano

Napping again

Special notes left behind from the Keens
on our white board -
we sang this song with the Keen family 
when we were in Alaska 3 years ago.

Sweet encouragement from the Keens.


Long Awaited Visitors

We have known for quite some time that some visitors would be coming to our house this month.  We had no idea all we would be facing at the time of their visit, and we are certain that God knew we would need their encouragement and presence more than ever during this particular time.  Having them here is no small thing seeing as they would be coming from Alaska!  We love having them, and our boys adore Brother James.

Daniel was so excited that he remembered he had a suit that had been given to him in a storage bin in the garage.  I wasn't sure it was in his size or in decent shape, but Daniel wanted so badly to find it so that he could wear it when Brother James came to preach at our church.  Thankfully, it was the perfect size and BRAND new!

From the moment they arrived to the night before they left, my heart was full!  I could not thank God enough for His perfect timing and for blessing us with friends like He has.  We are so unworthy, but I am so grateful for the late night talks and chocolate cakes.


In their new suits -
Sunday best, of course!

James and Brian

Jenna and Mary

Our Boys with the Keens

Monday, March 23, 2015

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.


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.


Friday, March 20, 2015

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.