Too Much Brain to Contain

I know we all have our problems... but Jayson's problems are extra special.  It's a known fact that every mom claims that her child is the smartest in the world.  I am not an exception to that rule.  My child is brilliant.  His brain is huge.  I've got the images to prove it :)  Okay, well his brain is typically sized, but it's his skull that is not big enough to contain his brain.  Either way you look at it, Jayson has......

We already addressed the problems in his brain stem by decompressing his Chiari Malformation in January of 2013.  During this process, Jayson's neurosurgeon Dr. B took out some of Jayons' brain tissue (brain tonsils), some of his skull, and some of his top vertebrae to make room for his brain.  The brain stem is responsible for important skills like swallowing and breathing.  Decompression surgery significantly helped Jayson.  Quite honestly, it saved his life.

But the battle isn't over.

There is still not enough room.

His brain stem is still tight, but the doctors don't think they could do any better if they went back in.  Jayson is just very small back in his brain stem area.  But the brain stem is no longer the only issue.

Jayson's head circumference is just barely over 45 centimeters.  That's small, folks.  That is off the charts small, and it has been 45 centimeters since he was about 8 months old.

It doesn't take a rocket scientist (or in this case, a brain surgeon) to figure out that it is not a good combination when the brain continues to grow, and the skull doesn't.  I may not be the sharpest tool in the shed, but I know that could be problematic.  Our geneticist was really concerned, so we were referred once again to our craniofacial specialist/surgeon.  He, however, was not concerned.

Right?  This was seriously my face.  Our conversation went a little something like this:

Dr. S:  What are we seeing you for today?
Me:  Jayson has seen you in the past and you told us to follow up a couple of years down the road, so here we are.  Also, our geneticist is really concerned about the fact that my son's head has not grown since he was 8 months old.  His microcephaly is off the charts.
Dr. S:  I see.  And so why are you here?
Me:  Well our geneticist suggests a 3D CT scan of his head.
Dr. S:  That's a lot of radiation.
Me:  Yes, I know.  But it seems like it may be necessary.
Dr. S:  Does he feel it's necessary?  Or is it you that feels it is necessary?
Me:  I don't know.  I'm not very knowledgeable in the medical field, so I'm sure my thoughts may be a little unfounded or ignorant.  But we know Jayson's MRI's have been normal so his brain is growing typically, but his skull is not growing.  I am thinking that could be problematic.  Perhaps that is causing his big increase in seizure activity and sleep problems.  But those are just my thoughts.
Dr. S:  Yes, that can be problematic. But I don't know that there is anything we should do about it.
Me:  Well is there a reason why his skull is so small?
Dr. S:  There are two reasons why his skull would be small.  Either his brain is small, so therefore his skull is small.  Or his sutures fused early.
Me:  Well, since we know his brain is normal sized, can't we then conclude that his sutures fused early?
Dr. S:  It's possible.
Me:  Well how would we know.
Dr. S:  Through a CT scan.
Me:  So isn't that a good reason to get the 3D CT scan?
Dr. S:  That's a lot of radiation.
Me: Yes, I'm aware of that, but it seems like there is a good reason to have it done.
Dr.  S:  Maybe, I'm not so sure.  That is a lot of radiation.
Me:  Well if his sutures fused early, is it causing pressure on the brain?
Dr. S:  It could be.  Has he had an eye exam?
Me:  What?  Yes.  I am not sure which eye exam you're talking about.  But yes, he's seen an ophthalmologist and had his eyes dilated for an exam.
Dr. S:  How did that go?
Me: ....... well...???.... he needs glasses.  He has nystagmus, strabismus and Duane syndrome in the right eye...
Dr.  S:  Sounds like his pressures were fine.
Me:  I didn't know they checked pressures?
Dr.  S:  If they didn't tell you about it everything was probably fine, so there probably isn't any pressure on his brain.
Me:  I have spoken with neurology, neurosurgery and ophthalmology about this, and no one has ever mentioned to me that we can tell the pressure in the brain by a simple eye exam.
Dr. S:  Yes, he is probably fine.  So what can I do for you?
Me:  Well, we were referred to you because of his microcephaly.  He has had increased seizures, headaches, migraines and sleep issues.  We wondered if it was from pressure on the brain.
Dr. S:  A lot of things can cause seizures, headaches and sleep issues.
Me:  Yes, I know.  We just wanted to rule this out... likely with a 3D CT scan.
Dr. S:  That's a lot of radiation.
Me: Yup.
Dr. S:.......................okay................. let me go get that order for you then...............  And I suggest you follow up with Dr. B.  I don't think you'll need to see me again.

Yup, that was it.  Painful, right?  And I wish I was lying or exaggerating... he really did mention the radiation concern THREE times.  So I got the order from him, set up an appointment with Dr. B, our neurosurgeon, and headed down to radiology to schedule J's CT scan.

The scheduling gods were watching over me, because we experienced a medical miracle.  I got the run around, was on hold several times, on the phone for over 20 minutes, and spoke with 5 different people, but I FINALLY got the okay to schedule our CT scan while Jayson was already under anesthesia the next week for a series of surgeries and procedures.  Let it be noted--->  I have YET to meet anyone else who has successfully scheduled a procedure in the OR followed by a procedure in the radiology department.  Radiology does not share or play nice with others at our hospital.  Like I said, the scheduling gods were watching over us!!

We got the scan successfully done on Monday, and we very very quickly went over it today.

Dr. B had an emergency surgery today, so he was an hour and a half late getting to our appointment, so our time was brief.  Like 5-7 minutes brief.  As he rushed in the door he said,  "Sounds like you have a lot of questions for me.  Jayson sure is a complex kid.  Let's see how quickly we can get through your concerns."  #1

We discussed Jayson's new eye movements, recent seizures, and headaches and migraines.

"And his seizures don't register on an EEG I see.  We just can't figure him out.  He's super complex." #2

We discussed Jayson's sleep issues, but also his big progression in skills lately.  No choking, no swallowing issues, no vomiting.

"That's the thing.  He doesn't always show us all the signs.  He can really be struggling in some areas and progressing in others.  He's hard.  He's one of my most complex patients."  #3

We went over Jayson's flex extension x-ray looking at his C1 ring.

"There's some movement there, for sure.  We don't like to see that, but we wouldn't want to go in and do anything about that right now.  So far, I think it's looking okay."

I asked if he would need to wear a neck collar to stabilize him, and he said not at this time.

We then looked at the CT images.  Like in fast motion.  As in he used the little wheel on the mouse to scroll through at a lightning speed.

"So regarding his skull, have you seen Dr. S?"

Me:  Yes, we just saw him last week and he told us to follow up with you, and that a follow up with him was not necessary.

"It's probably because Jayson is so complex... it's hard to know."  #4

"Well, let me show you a few things.  So things don't look too bad.  He's got some major flattening on one side of his skull.  And some other weird shapes in random places.  It's problematic because his brain is going to keep growing and it will fill in these spaces, and the shape of the skull will start to affect the shape of the brain, and cause pressure."

"And then we can see that the skull is closed.  It's fused.  It likely fused early.  His brain is still growing, but his skull cannot.  That's problematic.  That will likely cause pressure."

"I don't suggest we go in and do anything about it right now.  He's progressing well and seems to be doing pretty well considering.  Things look a little worse than the symptoms he's showing.  But Jayson is super complex.  (#5) He could surprise us and suddenly not be well.  I think we need to keep an eye on it, and I tell you what I'm going to recommend.  I think whenever you decide he is having a difficult time that we bring him into the ICU, I'll do a little incision in his head and we will place a little probe/sensor for 24 hours.  We watch him in the ICU and let him just do his thing, and it measures the pressure.  This will let us know if we need to do a shunt or a ____________ surgery"

At certain points, doctors say really really long words that I can't begin to repeat, let alone spell, and I miss the name entirely.  This is one of those cases.  I do know the surgery was a reconstructive skull surgery; an expansion surgery of sorts. Perhaps it was "Cranial Vault Expansion" surgery, but it seems I would have remembered that one. :)   Basically, I'm thinking of it as a skull expansion remodel so there is more room for Jayson's genius brain.

And basically that was it.  So now we wait and see.  Not the greatest of news, but I'm happy we don't have to do surgery now!  I'm also happy that we have a plan next time things go South and all of our doctors start scratching their heads.  Instead we will just call Dr. B and head to ICU to monitor the pressure in J's brain.  Sounds awful; sounds invasive; sounds like we have a plan and a possible explanation to some of Jayson's biggest issues.

And in case you didn't notice, we set a new record today.  In our brief 5-7 minute appointment (Yes, Dr. B talks FAST) our doctor said, "Jayson is complex" FIVE different times.  It's seriously gotten to a ridiculously funny level how often that phrase is used by all of Jayson's doctors on our team.  It's their catchphrase used to mean, "I have no flippin idea".  But I will be honest, Dr. B is our most confident, most arrogant doctor... and to hear insecurity in his voice today along with the five "complexes", I'm a little nervous....

So there you have it... Little J is complex.  But what else would you expect from a brilliant kiddo whose brain is too much to contain?!?!  I'll tell you what I expect...

A Parable

par·a·ble

ˈperəb(ə)l/

noun

1. a simple story used to illustrate a moral or spiritual lesson, as told by Jesus in the Gospels.  a succint, didactic story, in prose or verse, which illustrates one or more instructive lessons or principles.  A parable is a type of analogy.

I had a dream a week ago, that was actually more like a vision.  I was not completely asleep, and I had a special feeling before it happened which led me to believe I was about to have a spiritual experience.  I learned several lessons through this vision, that I believe was much like a parable.  I do not ever want to forget it; it was meant for me, and taught me much about my unique journey.  It can be interpreted in so many ways, and I think by writing it down it can continue to teach me throughout the years.  I also want to share it.  I got the impression as this vision was meant to share, that it might help others who are on a unique journey in a similar or different way.

I was in a valley with Mike and Jayson.  The valley did not have any buildings, cars, houses, or structures.  It reminded me of what the Salt Lake Valley might have looked hundreds of years ago as the pioneers were about to settle here.  We had wagons pulled by cattle and horses, and life was very simple.  The valley was green, plentiful and beautiful.  There were rivers and lakes, and the valley was surrounded by very tall, beautiful mountains.  There was a clear passageway through the mountains, almost like a canyon, but due to the curvature and length of the passage, it was impossible to see what was on the other side of the mountains.  

There were many people in the valley with their families and their wagons.  There were a few of us with stationary wagons, spread all over the valley.  Our animals were grazing, and we were all glowing with happiness.  All of the many many other families, however, were traveling very quickly.  They were following one after another in a line heading towards and through the canyon.  They had a destination in mind, and they were very intent on getting there.  Their wagons and animals moved quickly.  Mothers were dragging their children by the hands, telling them they must hurry to get to their destination.  Fathers were driving the wagons, urging the animals to keep the pace.  They, too, were happy, but rushed.  They kept looking forward, noticing others were ahead of them, and wanted to keep up.  They didn't want to be left behind, and they had a very important place to go.  

I spoke with several of the mothers, and I asked them why they were leaving this beautiful valley.  "It has everything you could need," I said.  "It is calm here, it is beautiful and peaceful, and life is simple.  Why would you want to go anywhere else?"  I was told that they were told of a great destination.  They weren't sure where it was, or how long the journey would be, or how they would know they arrived.  But they didn't want to be one of those left behind in the valley.  They wanted to keep moving forward.  If they weren't moving forward towards some destination, they were stagnant.  What kind of life would that be?  It was important to them to keep busy, to keep moving, and not to be left behind.  They said they were trying to find joy in the journey, but it was difficult because they had to keep moving.  There was little time to enjoy the beauty of the valley where they currently were at.  All they could think about was where they were headed, and how wonderful it would be.  

I was not able to move forward with them.  My wagon was stationary.  Part of me wondered what was on the other side of the mountains, through that passageway.  Part of me wondered what kind of happiness they might find there.  I saw all of them and their families traveling, and part of me longed to go with them.  I, too, did not want to be left behind.  But I had no choice.  So I looked around me, and saw the beauty of the valley, the colors in the mountains, the sparkling water, and the greenery that surrounded my family.  I saw other families who were also noticing all of the beauty.  There was an appreciation for the little things:  the grass, the trees, the lakes and rivers, the animals, the blue skies.  There was a focus on time with family, not the futures and opportunities that lie ahead for the family members.  I noticed the families in the valley were different, like mine.  Their children were different.  Their wagons were stationary too.  But our families seemed to be glowing and radiating with happiness.  Our lives were simple and slow paced, and our focus was on our families and what was happening NOW, not where we were headed in the future.  

We watched others speeding by and partly longed to be with them, but also party felt bad that they were not able to stop and enjoy all of the beauty around them.  They were not able to enjoy the moment they were in, because they were so focused on where they were headed.  They were so busy pulling their children along with them to some unknown destination that they were not enjoying time in the valley and all it had to offer them and their families.  I felt grateful my wagon was stationary.  I felt grateful we were living and loving every minute in the moment instead of rushing and heading towards an undefined destination.  We were finding joy in our current situation, and not taking for granted even a moment of precious, beautiful time with our families.  I knew my place was there in the valley.

The next part was religious, special and personal, so I do not want to share too much.  But I dreamed that Jesus Christ came, and the first place he came was the valley.  Christ stayed with us in the valley, and he held and comforted our children who had special needs.  He was not rushed to see the busy people; he spent time with us because we made time for him our lives by appreciating all of the small things, and enjoying all of our blessings in the moment we were in.  We may have been left behind, we may have been slow, our lives may have been different, but Christ visited the valley first, and spent time with our children.  It was in that moment, that those who were rushing towards the passageway started to be envious of those of us who were stationary.  They knew that they too would see Christ, but he stopped and spent time in the valley first.  They started to question where they were heading, what the rush was all about, and why the felt the drive to busily move forward.  They couldn't stop their journey, so they just silently admired the stagnant.  

And my vision ended.

A parable teaches a lesson, and often it can be interpreted in many ways. A parable can also be symbolic and may have many representations.  That is why I think this vision can be compared to a parable.  I think many who read it may interpret it differently, but I think that if I share it many might benefit from their own interpretation.  The valley, canyon, wagons, stagnant families and moving families might all have different representations.  Let me share with you my current interpretation:

Currently, I think those stagnant wagons and families in the valley represent my friends, those with special needs children.  They are stagnant because of their different challenges.  They can't leave the home often, they can't make great plans, they can't travel, and in many cases they can't ever move to a new place because of their ties to local doctors and hospitals.  They don't get date nights, they don't get time to attend religious events and ceremonies, and they feel stuck.  They see others around them and feel like others' lives are moving forward and on without them.  Yet, they are happy.  They are glowing with happiness because they understand the purpose of life.  They get what this journey is all about.  They love the little simple things, and the beauty around them.  They aren't distracted by future possibilities and people rushing nearby.  They are focused on their families.  They don't worry about the future and the beauty they might be missing.  Instead they are enjoying the beauty in the moment with their special child, and with their families.  

The people rushing by are typical families.  They are holding their kids hands and pulling them along so they can keep up.  They don't want them to miss anything, and they want the best for them so they keep moving forward.  They don't know what the "best" looks like, or if they will know when they get there, but they believe their purpose is to keep busy and to keep moving forward.  

The canyon and passageway are distractions.  Distractions include activities like karate, dance, sports, and academics; they also include new jobs, travel, and opportunities.  The people want to rush to this passageway thinking this passageway and its activities will get their family and kids where they need to be.  They think it will prepare them for their final destination.  I did not see the final destination in the vision, because it doesn't exist.  These families keep moving forward passing through valleys neglecting the beauty and rushing through passageways hoping to arrive at a beautiful destination that doesn't really exist.  These families did not slow to enjoy any of the beauty because they wanted the best for their kids, and therefore kept pushing them through passageways and activities.  There was also a lot of pressure, because that is what the majority of the families were doing.  They saw other families doing activities and going through the passageway, and they didn't want their kids to miss out.  They did not want other kids to pass up their kids on their way to the destination.  It is important to note that they, too, were happy on their journey, but it was so focused and busy.

Christ visiting the families in the valley first represented a reward for a simpler grateful lifestyle.  All of the families would eventually see Christ, but Christ visiting the families in the valley first showed that keeping up with others and rushing to new destinations was not a pathway to Christ and the grand reward.  Enjoying what you have, spending time with family, and finding joy in the simple things in life was embraced and rewarded by Christ.  Living this lifestyle and staying in the valley prepared us to be in the right place at the right time to see Christ first.

The envy of the rushing families for the stagnant families represented typical families' sympathy and paradoxical admiration for special needs families.  They passed by feeling bad that some of the wagons were stagnant, but they noticed they were radiantly happy and that Christ visited them first.  This made them envious.  Typical families often notice and feel sympathy for special needs families because all of the pain and suffering we go through.  They also tend to admire our strength and outlook on life.  They notice we appreciate the small things, and live life on a day to day basis.  Although they are happily caught up in their rushing day to day happenings, they admire those of us who slow down and enjoy the beauty of family.  They also are sometimes admirable of the perspective we have on life.  We recognize life is fragile and we don't take a single moment for granted.  

I hope that no one feels that I interpreted this vision to mean special needs families > typical families, because that was not my interpretation.  I feel this vision was given to me to teach me that my journey is different and sometimes I will feel stuck and like everyone is moving forward without me.  But many of those around me are moving forward simply because it is what they feel they are supposed to do.  They are busy and their kids are involved in many things, and I'm jealous of the things they are doing, but their business does not allow them the time to enjoy the valley.  And because I have been given the gift of a special life, I have the privilege of enjoying the small things and focusing on what is most important.  I feel this vision taught me there will be a reward for that and that Christ looks favorably upon our simple lifestyle and our attitude of gratitude.  A part that surprised me in my vision is that others busily passing by may admire my unique journey; they may wish they could have this understanding of what really matters in life.  I find it hard that others would envy and admire my situation, but I think that was a lesson I was supposed to learn from this vision.

Thank you for reading this.  I am grateful for my beliefs, and that I know God communicates with us through answered prayers, visions, and scriptures.  Personal revelation is not only a gift given to prophets of old.  We, too, can receive personal revelation from our Heavenly Father.  He communicates with His children today.  I am so grateful that He communicated this beautiful parable to me so I could learn from it and be uplifted during this difficult time in my life.  I am glad for the testimony I have of Him and His son, Jesus, and for the blessing of knowing my family is eternal.  I know that regardless of what happens in Jayson's future, he is one of God's special children and we will all be together in heaven one day; and Jayson's body will be perfected.  I hope this parable and my testimony can uplift others who are reading it, regardless of faith or denomination.  We are all in this journey together.  And we will be rewarded for our faith and attitudes towards our trials.  The joy is truly in the journey, in the valley, and not in the destination.

If you want to learn more about my faith and denomination, I am a member of the Church of Jesus Christ of Latter Day Saints.  More information can be found at:  http://www.mormon.org/

Crossing All of Our Fingers and Toes

It's almost a thrill.  So much riding on one decision.  Genetics at our last appointment decided we had so many good possibilities presented to him, that it would be easier to do Whole Exome Sequencing.  This is a test he almost never orders.  He has got to be close to retirement age, and he told us as I asked a bunch of questions that he has only ordered a hand full of these tests in his career.  We felt so honored to be among the families in which he decided to fight for answers.  He agreed to write a letter to our insurance company asking for preauthorization.  He said it would be done within about 10 days, and then our insurance company usually takes 10-14 days to make a decision.  Well, Yesterday I realized it had been a MONTH since our genetics visit, so I decided to start bugging people. :)  I called and left a message for his medical assistant and I called my insurance company.  My insurance company said they had NOT received a request for preauthorization yet. :(  I was fuming.  I had been told it would be a fight, but I was hoping it would be different for us.  I got a call from our geneticist's medical assistant today who told me she sent the fax on September 24th, but they have received notice that a bunch of faxes did not send that day, and they have since replaced their incompetent fax machine.  She apologized an innumerable amount of times and said she sent it via fax this morning while on the phone with my insurance company to be sure it sent.  The insurance company said they would also mark it as urgent and make it top priority since it was supposed to have been sent weeks ago.  So now, we wait.

I'm not very good at being patient.

I'm not very good at dealing with things that are out of my control.

I kind of obsess about it and freak out.

And I've currently gone off my anxiety meds.  Bad idea!

So I have to focus on what I CAN control.  I can control my faith.  I can exercise my faith.  Now is a time to pray, and pray a LOT.  And we have been blessed by the miracle of fasting in the past, and I fully believe now is another time in which God can bless us for our faith.  In my faith we believe that when we both fast and pray there is great power, because we are showing sacrifice.  It is easy to constantly be asking God for things and hoping he blesses us, but it is more meaningful to Him when we show sacrifice ourselves.  In my faith, this upcoming Sunday is our monthly Fast Sunday.  I am asking for those members of my LDS faith to remember our family during your fast, and to pray that the insurance company may preauthorize our request for Exome Sequencing.  For those not of my family who believe in God and the power of prayer, I request that you please remember my family in your prayers and ask for this preauthorization to be granted.  You may also participate in a fast with us by missing 1-2 meals and praying on our behalf.  Mike and I will be fasting on Friday, October 10th.  We do not want to wait until Sunday, and we will be out of town, so we plan to fast on Friday.  I have also seen miracles happen when many people fast and pray together, and that is why I am asking you for your help.  For those who do not believe in organized religion, you play a big part in our journey as well.  You, too, have greatly blessed our lives with your positive thoughts, encouragement, and hope.  I have had several of my dear friends who do not believe in God still participate in a fast, as it still shows dedication to the cause.

So whatever your beliefs, please pray with us, hope with us.  We need a miracle, and we know with your love and support God can provide us with one, again.  We love you and thank you for all of your love and support.