Graham's surgery - Success. But a more pressing emergency!

Dear Friends and Family,

Graham's surgery was a great success. He's home and resting and already back to his normal self. I'll update you all in more detail later, but there is something that needs your attention now.

The title of this blog is True Super Hero. I started this when my son Graham was in the hospital after having his head run over by a car. I picked that title with three things in mind:
1) Graham, overcoming all that he has, is a True Super Hero
2) Those friends, family members, doctors, nurses, and complete strangers who reached out and helped us; lifted us up in our time of need; are True Super Heros
3) Those normal people who do extraordinary things are True Super Heros

Kurt Young is one such Superhero. A dedicated husband and father of 8 passed away on Monday, less than two weeks before Christmas, while saving his wife and three youngest children from a house fire. He leaves behind a family who lost their house, their husband, and their father. It is the ultimate tragedy- the sort of thing that I cannot comprehend. Sorrow that I have never known. And they need our help.

A gofundme account has been set up to help the family with the cost of their funeral. The goal is $10,000, and this is not nearly enough. We need to raise more. A lot more!

As we celebrate Christ this season, let us remember who he was in his mortal life and what he stood for. He loved the whole world. Those he never met. He even loved those who hated him, spat on him, and crucified him. As he endured his last mortal hours on earth, nailed to a cross, he prayed for them who hated him and jeered him during his suffering: "Father forgive them, for they know not what they do."

Christ's life was a gift. His mission was giving to and loving both those who are close to us and those who are complete strangers. And right now, in this season of giving, a family has lost everything, and they need a gift from you. This is the reason for the season.

Please dig deep. Get your kids involved. Ask them if they want to set up a hot chocolate stand and donate the contributions to the Young family. Ask them if they want to return a gift and donate it to the Young family. Give up your Starbucks for a week. Forgo a meal out and donate it to the Young Family. But please, you 4,000 strong who prayed for and lifted up my family during our hour of need- turn your thoughts, prayers, and kindness to the Youngs this holiday season.

https://dm2.gofund.me/ujfwjetc

Ice Cream Sandwich, a Seizure, and Brain Surgery

It's now been almost 18 months since the day that changed our family forever.  On that first day of the kids' summer vacation in McKinney, Texas, I remember standing panicked in the street a few hundred yards from my house while sirens flashed, staring at my motionless son Graham, and wondering if he would ever walk, talk, speak, or even live again.  His head had been run over by a car, and his skull was obviously misshapen.  He was carried away in an ambulance and then in a helicopter, his landing spot unknown to Lindsey and me until several hours later.

Since that day we have witnessed miracle after miracle as Graham endured brain surgery, skull reconstruction, three months in the hospital, and countless hours in therapy.  Graham has healed. Our family has healed.  And for the most part we've gotten back to life as normal.

In particular Graham's short-term memory, while still not back to normal, is much improved.  I can remember in the months following his release from the hospital last year, we would do VERY SIGNIFICANT things like going to a movie as family, visiting Santa at the mall, or taking a trip.  And mere hours after those events he had little if any recollection of them ever occurring.

Yesterday, however, I was having a conversation with Graham, and during the course of it he mentioned that he would love to have some ice cream.  I told him that he could have an ice cream sandwich later, he got a little excited, and we carried on with our conversation.  A few hours thereafter Graham made a point to remind me - "Dad, you promised me you would give me an ice cream sandwich, remember?"  And of course I did remember.  But more importantly - GRAHAM remembered.  Unprompted and un-reminded, he recalled a small detail from earlier in the day.  That NEVER happened during the year following his accident.  But it is starting happen more and more often.

Graham recognizes his inability to remember things, and often reminds people of his condition by quoting Dory from Finding Nemo: "I suffer from short term memory loss!"  Now though, when he says that, we are confidently able to tell him to his delight, "Not anymore Graham, you're getting better!"

Graham still requires constant care, but overall things are getting better.  He's blind in his right eye and legally blind (20/200) in his left, but he manages to get around, read for school and for pleasure, and do his homework.  He even enjoys playing video games and playing catch.

One skill that Graham has maintained before, during (except while in a coma) and after his accident is his ability to quote movies:

He loves to play and be silly and play with his brothers and sister like any normal 7 year-old

He's an awesome big brother, friend, and cousin.

And his big brother Brode, in creating a poster about his hero for school, returns the favor.

Graham is definitely his own man.  He loves to play, create art, exercise in very short spurts.  Non contact taekwondo is perfect for him.

The long walk home from school though?  Not so much!

* * * * * * * * * *

On the last Friday of October, just before Halloween, I was returning from a business trip in Oregon and I got a call that we have feared would come for some time.  I answered and Lindsey was on the other end of the line.  She was calm, but there was obviously fear in her voice - a fear that transferred instantly to me.  "Every thing is OK....Graham had a seizure.  It lasted a really long time.  We called an ambulance and I'm with him and we're on our way to the hospital."

Thoughts and questions began pouring into my mind.  Would Graham really be ok?  Did he fall and hit his head?  Did he suffer more brain damage?  Did my other kids see him?  They suffered immensely from the emotional trauma of Graham's accident.  Would this bring that fear and worry back into their lives?  How is my wife holding up?  Who has the kids?  How much longer till I get home?!?!

We were very worried about Graham, needless to say.  He did hit his head when he fell and seized, but an MRI and CT Scan show he was spared from any additional damage to his brain.  And even though the seizure lasted between 5-10 minutes, he actually breathed through it, meaning the supply of oxygen to his brain was sustained.  And though he was temporarily blind in BOTH eyes during his ambulance ride and shortly thereafter, his vision has returned to "normal."

Since then we have returned to normal as well, and with a few tweaks to his medications we are optimistic that we'll have a nice dry-spell in the seizure department.  So we now turn our thoughts to the next big event - brain surgery.



In case you don't remember, this is what Graham's skull looked like immediately after his accident:

His entire forehead was broken away from the posterior part of his skull, breaking across both orbital bones, the bridge of his nose, and circling around over the top of his head.  After completing brain surgery to repair his torn dura (brain sac), his skull was reconstructed.  At least the outside of his skull.  There was an area of his skull that was inaccessible to the surgeons through his opened skull - the base of his skull, or the "bottom of the bowl" if you will.

This break opened into the sphenoid sinus, meaning his "clean" brain cavity was constantly exposed to his "dirty" sinus.  This puts Graham at a tremendous risk for getting a debilitating and potentially deadly meningitis infection in his brain.  Doctors before and after our move back to Boise, Idaho had differing opinions on how to deal with this issue.  But the good news is we now have a team of doctors a few aways away in Salt Lake City who agree on a plan of action and who are willing to address the issue.  So on December 1, 2015, Graham will have his next, and what we hope will be his final, brain surgery.

The good news is that they don't plan on opening Graham's skull to perform the repair.  They will instead remove some fatty tissue from Graham's belly, and together with some titanium mesh they will construct a "beaver dam" in his head to plug up the hole seen above.  It should take a few hours, and it is still brain surgery, but it's obviously less invasive than the last time he went under the knife.  There are risks and unanswered questions:  How will he respond to prolonged sedation?  Will the mesh stay in place when he sneezes or exerts himself?  Will his brain cavity reject the fat transplant?

Still, I'll relish these questions running through my head compared to the questions that weighed me down as I looked at my son in that driveway 18 months ago.  On November 29 we will fast (go 24 hours without eating or drinking) and pray for our son as a family, and we invite any who feel so inclined to join with us in this.  We are so grateful to God, friends, family, nurses, and doctors have carried us to this point.  And we know that our future is in God's hands, and that's a great future to have, regardless of any short-term obstacles we may run in to.

Thank you all for your positive thoughts and prayers for our son.  We'll keep you posted as Graham jumps over this next hurdle in his life.

New Places, New Faces, and the Next Big Hurdle

 

Just before the Fourth of July this summer we loaded up the moving truck and moved our family from Dallas, Texas to our other “home” and Graham’s birthplace- Boise, Idaho.  It was a move that caused a lot of anxiety for several reasons.

First and foremost, Graham’s school and our church were nothing short of amazing.  Graham’s principle and teachers at Ogle Elementary treated Graham like he was their own son, and ALL the kids at the school treated Graham like he was a ROCKSTAR.  Our church lifted us up and gave us more support and kindness than we could ever hope for.  From the day 16 months ago when a car ran over Graham’s head until the day we left, we had the greatest support system a family could ask for.  We would occasionally have the opportunity to walk the halls of the school with Graham for one reason or another, and kids of all grades would say “Hi Graham!” or “Hey there’s Graham!  Hi Graham!”  as they waved at him with giant smiles on their faces.  The school held a big assembly for Graham during the last week of school and named their school theme for the following year – SUPERHEROS – in his honor. 

As we pondered our move, we wondered – how would his new school treat him?  In McKinney, his school went through the trial of Graham’s accident WITH us and WITH Graham.  They prayed for him.  They stood by us through his miraculous recovery.  They loved him.  How would Graham do at a new school, where he’s not “The Superhero?”  Where he’s just the new kid with an eye that doesn’t work and a memory that forgets?  Would he be bullied?  Would the school accommodate him? Would his teachers understand him?  Would his classmates accept him?

In moving back to Boise, we also had to leave the doctors who, in essence, brought Graham back to life and got him back in our home after 3 months in the hospital.  Graham would need a new neurosurgeon, a new neurologist, and a new endocrinologist.  Would they see eye to eye with his previous doctors?  Or would they have widely differing opinions and cause massive disruptions in Graham’s recovery as they put their own “mark” on him?

Then there were practical matters – how long would it take Graham to learn the hallways at his new school?  At his new HOME?  Graham has been a rock of optimism and positivity ever since his accident.  He is quite possibly the happiest and kindest kid on earth.  Could he maintain that?  Or would all the changes resulting from the move finally prove to be too much for him to handle emotionally?  Would it break his spirit?  And what of our other three kids?  How would they handle it?

Well, we are happy to report that the anxiety storm has been calmed, and all is well.  His new school – Andrus Elementary in Boise, Idaho, has exceeded our expectations.  The principle and teachers have stepped up and met Graham’s every need, and the kids have treated him with kindness.  Our church has been great as well, and Graham has more friends in the neighborhood than we can count.  In short, the move has been a great success!

Graham has a new Neurologist and Endocrinologist here in Boise, and a new ENT surgeon and Brain surgeon a few hours away in Salt Lake City.  We like them all, and their opinions thus far have been consistent with those of the team that nursed Graham back to health in Dallas.

Inclusive in that consistency is the expert medical opinion that Graham needs to have another surgery.  He still has a crack in the base of his (should be sterile) skull that leads into his “dirty” sphenoid sinus. And the crack is growing.  As one of his doctors put it, Graham is a “Walking case of meningitis waiting to happen.”  Performing his surgery is not an emergency, but it is necessary.  He’s literally a bad sneeze away from introducing bacteria to his brain.  So surgery will happen in Salt Lake City on December 8.  His ENT Surgeon and Brain surgeon will work together clean out and seal the crack in his skull with titanium mesh and fat from Graham’s belly.  As they put it, it is “not a minor surgery – it’s brain surgery” even though they will not need to perform a craniotomy; instead performing the surgery endoscopically.  He’ll likely have to stay in the hospital for at least a week, and the timing (intentionally) means he’ll be out of school for about a month.  And while no parent ever wakes up in the morning and hopes their kid needs brain surgery, we are grateful for modern medicine and the opportunity to clear Graham’s next hurdle.

Thank you to all our friends and family near and far who continue to support Graham and pray for him.  We know that his recovery is a wonderful combination of great medicine and divine intervention, and for the latter we thank a loving Heavenly Father and all those who prayed to him on Graham’s behalf. 

 

More updates will come, and until then God bless you all.

Moving, Moving Forward, and More Surgery

It's hard to believe it has been one year since Graham's head was run over by an SUV and our little superhero pulled himself out from under a car and began his miraculous recovery. 3 weeks in a coma, had skull reconstruction and brain surgery, a and spent almost three months in four hospitals before finally returning home. If I'm honest with myself, I'll admit there were brief times when I didn't think he would live. When we didn't think he would ever walk, talk, see, or hear again. But with faith, amazing doctors and nurses, prayers and support, Graham has overcome all the odds and made a near-complete recovery. And as we've returned to our busy lives, many have reached out and asked: how is Graham today?

The short answer is, "he's good."  The long answer is complicated, and it begins with us moving at the end of June.

Back in November, I began having discussions with my company about taking over an open territory in our hometown - Boise, Idaho. At the end of January that deal became final, so Lindsey and me began preparations to move.

Fast forward to about two weeks ago and we had a conversation with Graham's Neuro Surgeon. We told him we wanted him to see Graham in clinic once more before we move, so that we could discuss Graham's long-term health and prepare to transfer his care to new doctors in Boise. He asked us, almost in passing, if we wanted to do another MRI to check up on things. We decided that would be good, and scheduled both the MRI and our next office visit.

The MRI came and went without incident, and we went to what we thought was a routine office visit with Dr. Braga. What came next knocked is off of our feet. Graham needs another surgery.

The reason is not new - Graham has a crack in the base of his skull (a "clean" environment) that now leads into his sphenoid sinus (a "dirty" environment). For more than six months and with four different groups of surgeons examining him, it was determined that Graham would not need surgery because his cerebral spinal fluid (CSF) was not leaking from his skull to his sinus. But in comparing past MRIs with his most recent one, it became clear to see that fluid was indeed building up in his sinus. That puts him at severe risk for menegitis, and so surgery is absolutely necessary.

At  minimum, it will require an endoscopic procedure going in through the nose, up the sinus, and sealing up the crack in the base of his skull from below. But the surgery is complex, and Graham also has fluid building up above his right orbital bone, so a craniotomy might be necessary as well. When the surgery happens is up in the air - it has yet to be scheduled and might delay our move a bit, but we'll sort all that out when we know more.

His long term prognosis did not provide much more by the way of positive news. Based on a review of the MRI, it was determined that he is extremely unlikely to regain vision on his right eye. And the still-visible damage to his brain indicates that his short-term memory is unlikely to improve as well. One of his orbital bones is growing in an odd manner, causing it to droop and likely necessitating reconstructive facial surgery as he reaches his teen years.

When we heard all the news, it was honestly very deflating. PTSD, for lack of a better phrase, set in, and many of the fears and emotions that we felt early on in Graham's recovery came rushing back. We became nervous. Scared. Sorry for our son and all that he will have to endure. Nothing will come easy for this guy. He has much yet to overcome.

But much like at the time of his accident one year ago, hope filled our hearts.  Hope became faith, and faith has become resolve. The way we see it now is this: all this news closes the chapter on his accident. We begin now to work for the future, embrace the differences that have set in since his accident, and prepare Graham to live the rest of his life as the sweet boy that he is.

We are so blessed. Against all odds, our son is alive and active. He completed first grade, although with Graham already being young for his grade and having trouble with his short term memory, we are strongly leaning towards a second year of it in Idaho to lay an even stronger foundation for his future.

We have been blessed with amazing family and friends. A loving and caring church, community, and school that wrapped their collective arms around Graham throughout the year. And we have a loving Heavenly Father who know Graham, knows his family, and will surely bless us with a path to happiness.

Graham will have challenges. He will have limitations.  But so do we all. When the deck of life was dealt, it simply wasn't in the cards for me to be the Jockey of American Pharaoh or a gymnast in the Olympics.  I'm 6'4'' tall. It was never going to happen. And that's ok. We all overcome our limitations, focus on our strengths, and do our best to be happy in life. At the end of the day, happiness is much more a result of good attitude than great aptitude. And nobody - I mean NOBODY, has a better attitude than our Graham.

So Graham is good. Change is coming. He has more to overcome. Life is not simple right now. But we know who holds our future. Thank you all for you continued kindness and prayers, and may God bless you all.

Onward and Upward

Graham continues to make amazing progress, and we continue to count our blessings.  So much has changed, even since the last time I posted an update.  Whether it's P.E. at school, his rehab schedule, his memory, or the plan for his continuing treatment, we are continually amazed at what a miracle it is that Graham is alive and getting better.   I'll post more details in the coming weeks, but I wanted to take a minute to share something about my beautiful bride:

Lindsey has been asked to be the keynote speaker at a Women's conference here in Frisco, Texas.  She'll recount the story from her perspective, give an update on Graham's health, and share both how faith helped get our family through the events of this past summer, and how those same events strengthened our faith.

Women of all faiths and backgrounds are welcome to attend.  You can see details below.  Lindsey will be speaking at 11:30 a.m.  She's very nervous, but will be happy to see you nonetheless!

http://countyourblessings.typepad.com/friscostakewomensconf/2015/01/our-keynote-speaker.html

"What do you want for Christmas, Graham?"

The other day I asked Graham what he wanted for Christmas, fully and foolishly expecting him to say he wanted a new dinosaur, lego set, or minion.  But instead, with a huge smile on his face, he contentedly said, "Nothing!"

You don't want anything?

"Yeees!  I just want you and Mom to be happy!"

His response has become the new normal since his accident just a little over six months ago.

This change in his temperament and other changes have taken place in Graham since that Monday in June:  The vision in his right eye shows shadows at best, leaving him with only legally blind vision in his left eye.  It is miraculous though - it was once doubted that he would ever see again, and now he sees well enough to walk, read, color, play video games, and basically do anything any average six year-old would do.  Small things are a chore, however:  iPhone games are too small for him to play; he needs the iPad version.

And of course Graham still lives with diabetes insipidus.  While in the hospital it caused constant fluctuations in his sodium levels, often becoming dangerously high or low.  One of his endocrinologists even told us "you guys are going to be in the emergency room ALL THE TIME.  You will fail at this.  There is just no way you guys can manage this at home."

But then another miracle - almost as soon as we got home Graham developed a faint but effective thirst mechanism, something we desperately wanted him to have in the hospital.  He won't always ask to drink when he should, but occasionally he does ask for a sip of this or that.  And we can always tell just how thirsty he is by the rate at which he drinks:  He chugs like a sober lush when he's thirsty, and sips like a Royal on tea when he's not.  When we first got home we measured every milliliter of urine and every scant ounce of fluid he drank.  He got his sodium checked multiple times each week.  And his sodium never once got to a dangerous level.  Our ability to manage it has brought us to the point where he only gets his sodium checked once every three weeks, and we no longer have to measure his ins and outs.  The enormous burden that we feared so much has proven to be quite manageable, especially with Lindsey's close supervision.  And Graham hasn't seen the ER once.  It is absolutely an answer to prayers, as we have seen time and time again with our sweet little fighter.

Graham himself has changed as well.  Quite shy and reserved with strangers before his accident, his inhibitions are now much lower, and he talks to adults and kids without the slightest fear or hesitation.

When Graham first came home, he acted immature, for lack of a better phrase.  He seemed like a big four year-old in the way he spoke and interacted with others.  But in the few months that he has been home, his mentality has matured significantly, to the point that he now acts his age.  "Oh.  Wow.  Big deal.  He acts his age," you might think.  But the change really is significant, and is a great sign of his continued recovery.

And speaking of continued recovery, Graham's short term memory still has a ways to go.  When he first got home he couldn't remember anything that was not drilled into his head.  He struggled for weeks to remember the name of his teacher at school.  And at times when questioned about details from his day he would either shrug it off or change the subject to something else.  When queued "Graham, did you do THIS or THAT?" he could often get the answer correct.  That meant that he was keeping the information in there, but his recall was terrible.

Very recently, however, we have started seeing a lot of improvement.  Yesterday Lindsey asked Graham what he had for lunch at school.

"A Lunchable."  He said.

CORRECT!

Other details are being retained more consistently as well, and so we faithfully continue to pray for his continued healing.

Graham has also become much more artistic since his accident.  He colors better than he ever has, and he memorizes songs and movie lines like no one you've ever met.  One of his favorites is from Finding Nemo:  "I suffer from short term memory loss.  I forget things!"  So appropriate!

Physically, Graham is pretty much 100%.  He was Harry Potter for Halloween.  He is cleared to play at recess, participate in P.E., and even jump on the trampoline (alone, with supervision).  He dances and does the best "Robot" you've ever seen.  And loves to show off his ability to slide his feet backwards, like a very awkward moonwalk.  When you see him in action, it's hard to believe he was basically in a coma just a few months ago.  It's hard to comprehend that his skull was crushed under the weight of a car, but it was.  And here he is.  He could potentially face one more operation - he had a CT scan a few weeks ago and an MRI yesterday - but we'll know more in the future, and we are grateful the the biggest mountain seems to be well behind us.

Our community has been nothing short of amazing.  Kids randomly come by just to say hi.  They deliver cards and posters.  And they even dress up just to brighten Graham's day.  Malcolm Farmer, the president of The Texas Legends (NBA D-league affiliate of the Dallas Mavericks) hosted Graham at a game - allowing him both court-side and in the locker room before the game.  And he led the team out of the tunnel as an honorary captain.  It would be an awesome thing for any family to just go and watch the game, but for Graham it was truly unforgettable.

Kelly Herrera, the mom of one of Graham's classmates from last year, put together a Herculean effort and organized an Amazing Fun-run and 5K to benefit Graham.  Hundreds of people, businesses, family, and friends donated and gathered to participate in a world-class event.  Celebrities like Drew Pearson come to hug Graham and even let him try on his Super Bowl ring.  And Graham even got to meet one of the firefighters who saved his life when the accident occurred.  (Those same firefighters, by the way, inexplicably decided that saving our son's life was not enough.  So they hung Christmas lights on our house for us.  How awesome is that?!)  We are so grateful for Kelly.  She had never even run in a 5K before.  She didn't know anything about them.  But she was touched by Graham and wanted to do something for him, so she went to work and did something incredible.  Needless to say, Graham was not the only True Superhero at the event.

His school has been equally impressive.  The kids treat him like royalty, and many of his classmates protect him like they are his own personal mother hen.  It's really cute to watch!  His principle comes to our car every day to pick Graham up and walk him to his class, and his teachers and nurse are nothing short of incredible.

The kindness that has been shown to us is truly humbling.  We have debts of gratitude that will bury us forever.  How can you repay so much kindness?  The world is so full of people who are genuinely and completely good.  The headlines show endless violence and vanity, but volumes could be written about the kindness that has been shown to our family in just six short months.  I think the world really is mostly good.  We just often choose to ignore it.

And speaking of good, there's Graham.  The boy who just wants his parents to be happy for Christmas.  The boy who does everything we ask.  The boy who is always smiling, always kind.  We are so grateful that his life has been preserved.  We are indebted to all those who cared for him; prayed for him.  People often talk about how easy it is to take the good things in life for granted.  But every single time I see him, EVERY TIME, I cannot help but smile and think about how blessed we are to have him in our lives still.

4 Weeks at Home

After three months in hospitals following his terrible accident at the beginning of the summer, Graham has now been home for four wonderful weeks!  It is amazing at just how normal it feels to be at home, how busy we have been (hence the sparse updates, which I will attempt to return to write at least weekly once again), and just how big my smile gets every time I see our cute little superhero.  I can't look at him without thinking of all the miracles it has taken to get him to this point, and seeing him day after day just fills my heart with joy.  So about Graham...

First of all, Graham's health is fantastic.  We take him in twice each week to get his sodium checked, and thus far it has been perfect.  It's a lot of work - we measure each and every time he goes pee, and the school nurse does the same.  We take into account how active he has been and make sure he drinks an appropriate amount to compensate for his output and activity.  And so far we have been doing ok.  He doesn't seem to be having the ups and downs he had in the hospital.  We haven't had to make any trips to the ER as the endocrinologist at Cook Children's was certain we would.  And so our concerns about managing his diabetes isopodous have been much ado about nothing thus far.

Graham's school has been amazing.  The Tuesday after we got home we had a huge conference with no less than 15 people in the room from the hospital, the school, and the district.  We spent nearly two hours discussing all his needs and the precautions that need to be taken, and they were so willing and eager to accommodate.  The end of the meeting was particularly special:

Graham's principle walked up to us at the end of the meeting and said she wanted to introduce the new school nurse to us.  She said "Things are really going to come full circle for you guys."  The school nurse, with tears in her eyes, went on to explain that she was the dispatcher who took the call when Graham's accident occurred.  She said she had never stopped in the middle of a call before to say a prayer, but that she did for Graham.  And she confirmed what we have known all along - based on what she heard on that call, it is a miracle that Graham is alive.

The rest of Graham's first week home was spent preparing for him to go back to school and adjusting to life and a schedule at home.  I went back to work.  We went to appointments with therapy, doctors, and his ophthalmologist, which is an appointment we were especially excited for.

The start of the appointment was about what we expected.  He looked in Graham's right eye and like before, his optic nerve was a bit on the pale side - a sign of the damage that had occurred.  The blood in his eyeball, however, was gone.  It had been mysteriously absorbed back into his body, leaving a clear path to the back of his eye.  His left eye (good eye) sees at just over 20/200 uncorrected, making Graham "legally blind."  It is correctable to 20/90, which is technically good enough for him to drive in ten years or so though.  At the end of his appointment I asked the doctor to test his right eye a bit more to see if any light was making its way back to the brain, mostly to satisfy our curiosity.  What happened next made my jaw drop.

The doctor patched his left (good) eye, while I carefully forced open his right eyelid.  Expecting the doctor to just shine a light in his eye, he instead held up his hand directly in front of Graham's blind eye in what I assumed was a pointless exercise.  He asked Graham if he could see his hand, and to our astonishment Graham said "yes."  He moved his hand out of Graham's field of view, and asked if Graham could see it, and he said "no."  He repeated this test several times and Graham passed each time.  The doctor then shined a small light into Graham's eye, and each and every time he flickered the light Graham could correctly identify it.  Graham could even correctly identify the number of fingers that the doctor was holding up.

We were both blown away.  Just another in a long list of miracles for our little superhero.  Since the appointment, he is opening his eye much more, although it is not back to normal yet.  And while his eyeball does move, it does not track down and to the left - an indication of damage to one of his cranial nerves.  But still - his vision is clearly back to a degree in his blind eye, and slowly but surely it seems to be improving.

I mentioned earlier that Graham's school has been amazing, and that is not limited to the teachers.  Graham is like a little rock star at Ogle Elementary.  Everywhere he goes, wonderful kids in all grades cheerfully say "hi Graham!"  They offer to help him out.  They are careful around him.  They just could not possibly be any better.  I think kids must just be nicer now than when I was a kid.  I worried a lot about Graham getting teased and bullied when he went back to school, but it has been the complete opposite. 

Home life is very normal.  Graham plays with his toys, his Legos, and the occasional video game.  His brothers know that rough-housing is strictly forbidden with Graham.  And Graham and Rocco are constantly bickering - just like before the accident. We still run the kids all over town to various sports and activities, and Graham is the #1 fan at all the games.  He is still the first o volunteer for chores, and in true Graham-fashion he has yet to break a rule since being home.  He is basically a parent's dream-come-true.

Graham is a walking, talking miracle and a testimony of the power of prayer.  Often throughout the day I think about this past summer.  The horror of seeing him in the neighbors driveway with a disfigured head, the peace that Lindsey and I felt as the prayers started to pour in on our family's behalf, and the joy of witnessing Graham's amazing recovery.  Thanks will never be enough for how indebted our family is to all of you, but thank you nonetheless for your continued support and prayer for Graham and our family.

Home Tomorrow

Graham Update Day 87

One thing Lindsey and I have consistently tried to do is help Graham understand why he is in a hospital.  He now understands that he was in an accident.  That a car ran over his head.  That he has been in the hospital getting better.  We've also told him that we share his story on the computer, and that lots of people have been praying for him to get better.

Last week Graham asked how badly he got hurt by the car.  So we slowly, and with lots of warning, showed him some pictures from early on in his recovery.  We emphasized how great it was that "Heavenly Father helped you get all better!"  and that so many people praying for him helped him get better quicker.  At that point, Graham asked the following questions:

"Have all the people praying for me seen my pictures?"

No Grahammy, they haven't.

"Why not?"

We didn't want to show everyone pictures of you without your permission.  Do you want them to see the pictures

"Yes!"

Why do you want them to see the pictures?

"So they can see how much better Heavenly Father made me!"

So after prayerful consideration, we have decided to honer Graham's wishes and let you all see how much better Heavenly Father has made Graham.  Just a warning - some of the pictures in the video are graphic.

Coming Home and a Big Challenge Ahead

Graham Update Day 83

Graham continues to make great progress in his therapy.  He's doing so well, in fact, that we finally have a discharge date.  We also have a very big challenge ahead of us as we try to manage his diabetes insipidus, a condition that he will likely have for the rest of his life as a result of his accident.  I'll try to explain the cause of it, as well as the unique challenge that Graham faces.

First, the big news: Graham is coming home next Friday!!  Yes, on September 5, 2014, just 88 days after getting his head run over by an SUV, we will finally be able to bring Graham home.  Graham asks everyday if we can go home, and we certainly share his anxiousness.  It has been so long since we have been at home as a family.  We long to hear them laugh, play, fight, and argue.  We'll take the good with bad, just as long as we are together.  It has been such a long journey, and in recent weeks it has been particularly wearisome.  And while Graham's homecoming is exciting, it does pose a VERY UNIQUE challenge...

Central diabetes insipidus only affects 1 in 33,000 people in the United States.  For those math majors out there, that means there are less than 10,000 people in the country who have Graham's disease.  Assuming the averages hold, there would be less than 250 in DFW with the condition, and less than 50 in the entire state of Idaho.  So yeah, it's RARE.

The hypothalamus produces a hormone called vasopressin.  That hormone is then stored in and released by the pituitary gland, and is used to help the body know when to pee.  Graham's hypothalamus was damaged, and he no longer produces the hormone.  That means without medication (or when his medication wears off), he "breaks through" and dumps urine at an alarming rate.  When he pees so frequently, the fluids in his body become more saturated, causing his sodium to get high.  Unchecked, it would get dangerously high.

Most people with diabetes insipidus could actually manage without any medication at all, although the non-stop peeing would get old.  As their fluids drop and their sodium rises, they would get REALLY thirsty and drink.  The problem for Graham is of the fewer than  10,000 Americans with the disease, he is one of the very few who does not have a working thirst mechanism.  So when Graham gets to a point where you or I would just about be willing to drink our own urine, Graham just carries on, not feeling any thirst at all. 

In a hospital setting they can check his sodium twice a day and adjust his dose accordingly.  At home, we don't have that option.  There is a company called Abbot that makes a home sodium meter called that iStat, similar to a blood sugar meter that diabetics use.  There problem is they have only made 50, all the meters are in use, there is a waiting list to use them, and they are no longer accepting people on the waiting list.  Furthermore, the machine is not FDA approved, which means they cannot mass-produce it.  And, likely due to the fact that less than 10,000 people in the country have diabetes insipidus, they don't even have plans to get the machine FDA approved or ever mass produce it.  So unless someone knows the CEO of Abbot or has another way to check Graham's sodium level at home, we will be playing a very critical guessing game for years to come.

And it is a guessing game, by the way.  They have literally changed the dose of Graham's medication at least twice per week for the last 2 months to try to get it in the right place.  They have gone from shots to tablets.  From giving doses twice a day to giving doses three times a day.  No matter what they do, he always needs a different dose.  In a normal patient it's not too big of an issue - when they dump urine at home - give them a dose and have them drink till they are not thirsty anymore.  But Graham does not thirst.  So the only thing we can do is measure all his fluid output and try our best to replace it everyday and hope that he has enough fluid.  But not TOO much - if we overmedicate Graham he will retain too much water and his sodium can also go the other way and get dangerously low.

So managing Graham's condition will be challenging.  But we are hopeful that in the coming week his doctors will equip us with some tools to help us keep it in check.  And in the grand scheme of things, if this is the biggest challenge we face as a result of Graham's accident - sign me up!  His recovery is nothing short of a miracle, and we are so excited for upcoming milestone.  Thank you all for all your prayers - we know the road would have been much tougher, if impossible, with them.

Home Stretch

Graham Update Day 77

The big event this past week actually turned out to be a non-event, which I will do my best to explain.  I'll also give a general overview of where Graham is at in terms of his therapy, and then outline the plan moving forward.

As many of you already know, Graham flew to Houston this week for what we thought was going to be an endoscopic surgery to plug up the crack in the base of his skull.  An MRI revealed a few weeks ago revealed that there was a leak from that crack into the sphenoid sinus, putting Graham at risk for future problems, including meningitis.

The view from Graham's room in Houston

When we arrived at Houston, the doctors there checked him out and had him do a few exercises to expose any fluid that might have been leaking.  He put his head between his knees and did other similar exercises that should have put pressure on his head and made any leaking fluid manifest itself through his ears or nose.  But that didn't happen.

As a result, the doctors there came to the conclusion that Graham did not need surgery, and here is why:

1. 90% of patients who have a traumatic brain injury like Graham, where cerebrospinal fluid (CSF) leaks out the nose and ears as it did with Graham in the ICU, develop meningitis - even while being placed on aggressive antibiotics.  The fact that Graham has been off antibiotics for weeks, and has not developed meningitis, tells the doctors that he is currently a VERY low risk to develop meningitis.  In other words, if he had a risky leak, he would be infected already.
2. Patients who have CSF leaks and then recover from them almost NEVER re-develop a CSF leak after this amount of time. 
3. If CSF is not currently leaking, that means he is "plugged up."  And even with the crack in the base of his skull present, that means the opening into the sinus presents no more risk of meningitis than other openings in our heads - like our ears.
4. With parental awareness of the signs of meningitis, his doctor in Houston said it is an easy thing to treat, provided you catch it early.  Most people have problems with it because they are not aware of what it could be, and it does not get diagnosed until well after its onset.  In Graham's situation, that shouldn't be the case.  Lindsey and I will be on the lookout!

It is definitely a nice second opinion to have.  To be clear, his doctors here still feel like he needs the surgery.  With that said, they do not feel it is emergent, and agree that the risk to Graham of going without it is fairly low.  So it really boils down to this:  the "Dallas Doctors" feel like the risk of surgery is lower than the risk of an open crack in the base of his skull.  The Houston doctors feel like it is riskier for Graham to be anesthetized and operated upon than it is for him to walk around in his present state.

So what will we do?  The short answer is "we don't know for sure."  We are going to finish out Graham's stint in rehab as if he doesn't need an operation.  We will follow up with Dr. Braga after discharge, gain a better understanding of exactly what surgical options are out there (and their associated risks), and then make an informed decision where we are not under some artificial deadline.  We will do what we truly believe is in Graham's best interest, long-term.

Medically, Graham is in a good place.  The diabetes insipidous that he contracted as a result of his accident (remember all his sodium problems?) has been largely under control.  A very significant change - Graham's stomach no longer looks like this:

The boy was a human pin-cushion

Graham no longer gets shots to administer his DDAVP.  Instead, he takes pills.  Early on during his ICU stay that obviously wasn't an option, since Graham was unable to eat or swallow.  And many endocrinologists don't like to give the drug through pills because they feel like you can't see changes in the patient quick enough, making it difficult to know how to adjust the dose.  In Graham's case though, the more gradual changes in his body chemistry has been a big blessing.

DDAVP takes the place of a hormone that is produced in your hypothalamus and then stored in and released by your pituitary gland.  It effectively works as your bladder valve.  Without it, Graham will pee unceasingly.  When he would get shots of DDAVP, it would immediately close "the valve" and Graham would not pee for hours and hours and hours, no matter how much he drank.  Then, as the drug wore off - all at once - the floodgates were open and Graham turned into a flowing garden hose south of the border.  Since being on the pill, however, his urine flow has been much more normal; peeing gradually throughout the day and then "breaking through" more slowly as the drug wears off .  It makes the idea of managing his DI at home seem much less daunting to Lindsey and me.

Physically, Graham can just about do it all.  Although he hasn't been officially cleared to walk around with out someone holding his hand yet, he can.  At times when he forgets "the rules" he can take off unassisted, much to the dismay of Lindsey or myself.  So far during his "escapes" or at other times when we have been by his side, he has taken off on a run, climbed a playground toy and gone down a slide, and done a full 360 spin while holding his light saber in his hand.  He can bend over and pick things up, and when he does stumble or trip he always catches himself.  So while Graham won't be able to participate in P.E. or normal recess for at least a year, physically he should be able to do lots of things to keep himself active and entertained.

Mentally, Graham is making great strides as well.  His attention span and focus have improved dramatically.  So has his ability to recall information.  His short term memory still isn't back to 100%, but it is improving and is in a manageable state.   For example - if you I ate a piece of cake for breakfast this morning, we would be able to recall it later in the day.  Graham typically doesn't remember those sort of details.  However, if you tell him several times at breakfast the thing he needs to remember, he will.  Alternatively, if you queue him and give him hints, he will be able to draw those details from his memory.  So all the appropriate connections seem to be there in his brain, they just need continued exercise.

Graham's eyesight is another matter.  While not severed completely, he definitely has damage to the optic nerve in his right eye, as he still cannot sense light with it.  He also has damage to the third cerebral nerve in that eye, meaning he cannot move his eyeball and has very limited ability to even open that eyelid.  Graham has asked us about it from time to time, and we tell him that we just need to keep praying that it gets better, but it might not - and that's OK.  That's why God gave us two eyes - if anything happens to one, we have another for backup. 

The good news is that Graham can actually see better out of his left eye now than he could before his accident.  His vision was about 20/200 in that eye before the accident, and is now 20/100.  There are certain difficulties that come with losing the vision in your dominant eye the way Graham has.  The good news is that his physical therapist at Children's Medical Center in Dallas said that one of the best ways to retrain a weak eye to become dominant is to play golf.  So golf therapy it is!

In the upcoming week Graham will actually be enrolled in the Fort Worth Independent School district, and a teacher assigned to the hospital will be Graham's teacher until he is discharged.  She will perform grade-level testing on him and then instruct him accordingly, just like if he was going to school back in McKinney.  A neuropsychiatrist will perform tests on him as well, and then when he is discharged his teacher here and one of his therapists will meet with his teacher and principal in McKinney to help make sure his needs are met when he gets back to his normal classroom, which should be some time in the next two weeks if all continues to go well.

We are so blessed that Graham has survived and come along as far as he has.  If, during the week after Graham's accident, you would have described this level of recovery to Lindsey and me, and then asked 1000 times if we would "take it," the answer would have been yes 1000 times.  He is doing better than anyone imagined.  He is walking, talking, laughing evidence of the power of prayer and the proof of God's love for us.  Thank you all for praying for Graham - it has worked and continues to do so.

Houston Bound??

Graham Update Day 71

Thank-you's, apologies, a close call, and a mad dash to the finish.  Lots to talk about in today's blog as Graham's next (praying for it to be the last!) surgery comes together...

First of all, thank you to all those who reached out to Lindsey and me with recommendations of people who could potentially take care of our little Super Hero.  Dozens of people contacted us offering up connections, introductions, and even your homes to us.  You are such wonderful people and your thoughtfulness and selflessness do not go unnoticed.  It really touches us that so many of you are so willing to help Graham at a moment's notice.

Next - my apologies for keeping everyone in the dark for the last week.  Remember though that in general no news is good news  Please also know that there was a method to my madness. 

At the beginning of last week we were waiting for Graham's neurosurgery team in Dallas to pound the pavement and find someone they were comfortable with to do an endoscopic surgery to repair the leaking fracture in the base of Graham's skull.  At the same time, my cousin Nick connected us with a neurosurgeon at Texas Children's Hospital in Houston - Dr. William Whitehead.  Dr. Whitehead agreed last week to see us this Tuesday for a clinical appointment, as well as tentatively schedule a surgery for the following day, which he would perform with Dr. Carla Giannoni - an ENT surgeon.  That they were both willing and able to see us on such notice is nothing short of a miracle.  The stars were truly in line for that option to even be a possibility.

Texas Children's is one of the best hospitals in the world and this was certainly a wonderful option, except for the travel.  We had hoped that our surgery team in Dallas would be able to find someone just as good who could operate just as soon, but the short story is that it did not happen.  So late last week, assuming transport could be arranged (a big "if"), assuming insurance would preapprove things (a bigger "if") and assuming schedules would hold (the biggest "if" of all), we determined that we would go to Houston for Graham to have his surgery done.

At first the plan was very simple - discharge from Cook Children's on Monday (today) with a couple days worth of medication, then Lindsey and I would drive Graham down, we would see Dr. Whitehead at clinic, stay at a hotel, and then show up for surgery and admittance to the hospital on Wednesday morning.  The alternative was a hospital-to-hospital transfer, immediate admittance, a visit with Dr. Whitehead during his normal "rounds." Two potential plans of equal merit.  Just some paperwork to get in order. The weekend brought trouble though.

To start - Graham started having "dizzy" spells.  He said the room would spin and he started acting confused like he didn't know where he was.  This was a first and obviously very concerning, so it was all hands on deck.  They ordered an MRI, which thankfully turned up normal, and began giving him an antihistamine to help with his sinuses - the suspected source of the problem. 

We entered the weekend with these dizzy spells, and nothing "official" on the Cook end of the equation.  Insurance was not in the loop, transport was not confirmed, and because of that we didn't know which plan to follow in order to see Dr. Whitehead.   The good news was we had the weekend to figure things out.  The bad news was that like this don't happen on the weekend.  So we were set to leave Monday (today) but we wouldn't know if insurance would authorize it, or anything for that matter, until... Monday (today).  And this morning, everything was put in jeopardy by our old nemesis:  Graham's sodium.

They check his sodium twice a day at 6:00.  This morning it was 153 - 4 points higher than what is considered acceptable limits.  And as far a the hospital is concerned - if your patient isn't well, you don't discharge - even to another hospital.  In Graham's case that would be a deal-breaker for the week.  No transport today.  No clinical meeting tomorrow.  No surgery on Wednesday.  And who knows when those stars would align again?  Our best option in Dallas wouldn't be available until October, roughly.  And in addition to the sodium, there was the issue of the dizzy-spells.  Was it really safe for Lindsey and I to transport Graham ourselves, given the recent changes in his health?  We told the doctors this morning that we didn't think it was.

So we were on the clock to get his transport figured out and his sodium back in line:  at 8:00 we found out that if Graham's sodium was not within normal limits (under 150) by 11:00, he would not be able to leave today, and everything would be off.  They "prescribed" him an additional 8 ounces of fluid to help bring his sodium down, but when I checked his urine output (yes, we measure every one) from the time of his sodium check, I saw even with the additional 8 ounces, he would still be fluid-negative on the day.  So Lindsey and I "ordered" him to drink an additional 16 ounces instead of 8.  And as I was walking down the hall while Graham was in PT, I felt strongly that I needed to tell his therapist to push the liquids on Graham, so they would have time to enter his bloodstream.  So I interrupted his therapy, she obliged, and together we got Graham to drink a total of 31 ounces by 10:30.  They poked his finger at 10:45, drew a small vial of blood, and sent it to the lab.

The next 45 minutes were excruciating.  Our amazing case manager and nurse practitioner continued to work non-stop to get everything coordinated, and yet this simple sodium lab could blow the whole thing up.  At 11:30 it came back:  Graham's sodium was 149.  Not a point to spare.  But game on!

From then on things slowly started to come together.  Graham's doctors agreed that a parent-transport would be unsafe, and everyone started working on a hospital to hospital transport.  Dr. Whitehead agreed to officially admit Graham today. Insurance approved the transport - but not by vehicle.  They felt it was to long of a drive from Fort Worth to Houston.  So transport would be by plane.  Cook's EMT Jet was available, and got approved by insurance.  Finally, a bed opened at Cook Children's, and at 6:00 this evening Graham and Lindsey took off and made their way to Houston.  I'll join them there late tomorrow night, and we'll be there for Graham when he goes in for surgery Wednesday morning.

Graham's team of 5 loading him on the plan while mom snaps some photos

Load him up!

 



And time to relax



This last week has been full of uncertainly and full of stress.  But it was more than worth it.  Graham is resting easy with his mom at his side at one of the best hospitals in the world.  He is being spared from getting the top of his skull removed and enduring a very risky and invasive surgery.  And somehow, someway, everything moved at medicine's equivalent of light speed to get Graham where he needs to be.  Henry B. Eyring said that nothing will surprise us more when we leave this life than to see just how familiar God is to us, and "just how much he was involved in our everyday lives."  It would be easy to call the happenings of the last week a series of fortunate events.  But I know they are the well-thought-out plan of a loving God and the answer to lots of prayers.  The fact that Graham is in Houston now?  Just add it to a growing list of miracles that he has lived through during the last two and a half months.  Thank you all for your prayers, and I'll keep you updated until his surgery Wednesday and throughout the week.

So about that brain surgery...

Graham Update Day 65 (8/12/14)

For those that have been following Graham's progress, you know that today is the day he was scheduled to be transported back to Children's Medical Center of Dallas to have his brain surgery done.  That's not happening - for now.

Dr. Braga called me late last week to let me know that he thought there might be someone in Dallas who could repair the leak that goes from the base of Graham's skull through into the sphenoid sinus by going in endoscopically through the nose as opposed to opening Graham's skull up again.  His plan was to try to find that "someone" over the weekend and determine if the fix might be possible.  It's looking more and more like it will be.  My cousin actually connected us with a pediatric neurosurgeon at Texas Children's Hospital in Houston who does basilar skull repairs endoscopically.  He has agreed to set an appointment to meet with us, review Graham's records, and perform the surgery the following day.  I was texting Dr. Braga today and he said he is close to having someone in town available to do it, and should be able to let me know tomorrow.

So the short story is that Graham's surgery tomorrow has been postponed/cancelled.  We are continuing on as normal here at Cook Children's Hospital in Fort Wort.  And one way or another - either in Houston or Dallas - it looks like we will be able to get Graham all fixed up without opening up his skull and performing a VERY invasive surgery.  It is a huge relief (knock on wood) and an immense blessing.  I'm so grateful that Dr. Braga (And Dr. Honeycutt here) looked at Graham's case with Graham's best interest in mind.  They worked without any egos and asked the question - what is best for Graham? - and set to work to make it happen.  I know that for me personally, when there is something that crosses my path at work that needs to be down, I put my head down and do it myself.  I'm grateful that there are people in the world who DON'T think like I do all the time.

We continue to be extremely impressed with everyone on the rehab floor at Cook Children's.  They were the ones who caught the leak in Graham's skull in the first place.  Then yesterday in one of Graham's therapy sessions, his therapist noticed that something with Graham was just a little "off."  He seemed a little dazed and confused.  Unsure of where he was.  She could have powered through his session and moved on to the next kid, but instead she alerted the medical staff.

Within minutes they were drawing blood for labs, bringing in nurses to do exams, and scheduling an MRI.  It was nerve racking to say the least, but it turned out to be much-ado about nothing. His labs didn't turn up anything abnormal, and his MRI results actually came with a pleasant surprise.  A nurse practitioner was reviewing the notes on the MRI with me this morning, and nothing looks out of place.  In fact, the MRI notes indicated that his brain shows a lot of healing since his last MRI, which took place less than two weeks ago.  She said he is an amazing boy and that his healing really is a thing of wonder.

So we will be in surgical limbo for a while, but that's OK.  We are 100% confident that the right choices are being made, and we are OK with waiting for a while to make sure things are done in the best way possible.  It sames like only a few days ago that we were in the ICU asking when Graham's first surgery would be, and the answer just kept coming back "1-2 weeks."  That surgery turned out to be a huge success, and it taught us to trust and allow for the time it takes to make sure things are well-planned and properly coordinated.

Thank you all for your continued prayers and support.  Many of you reached out to us to offer advice and recommendations for people who could help with Graham's surgery.  We are so grateful for you and grateful to know that if for some reason we couldn't get things done in Texas, that there are other places we could go to get Graham the treatment he needs.  We are so blessed to have such great friends, family, and others who care so much for our sweet little Graham.  Thank you.

Prayers By Graham

Graham Update Day 63 (8/10/14)

Graham's accident is a parent's worst nightmare.  When I saw him laying in the neighbor's driveway after his head was run over, I cannot describe the horror, fear, and anguish that I felt.  But from that time, with a lot of prayer, a lot of love, and many blessings  from our Heavenly Father, our burden as a family has been lightened, we have been comforted, and Graham has been blessed with a miraculous recovery.  Don't get me wrong - I wouldn't wish this on anyone, and I am not strong enough to say I would do it again if faced with the choice to do it over.  I absolutely would not.  But we are better as people for having lived through this. We have had so many deep spiritual experiences that no matter the end result, our family is on a better trajectory now than we were before, both as individuals and together.  And leading the way, as always, is Graham.  His first week in therapy here at Cook Children's, he paused in the middle of his exercises to ask Heavenly Father for help.  He is an amazing example of faith.  And last night, he proved again that he is faithful, charitable, and wise beyond his six years.

I am not the best father in the world.  Our scripture reading is inconsistent at best.  There are plenty of people who are more involved with their kids.  Who play more with their kids.  Who are better teachers to their kids.  But I try.  And one thing of which I have made a point in teaching my kids is to pray "with feeling."  In other words, when my kids pray I teach them not to go through the motions and say repetitive words.  But that when they pray they should be feeling - a lot - and speaking accordingly.  So whenever I tuck them in at night I always remind them - "Don't forget to pray...." and they respond "with feeling!"

So last night I was sitting in a chair next to Graham messing around on the computer while he watched a movie.  Out of nowhere, Graham said:

"Dad, please oh please can we say a prayer with feeling?"

When a six year-old asks for anything by saying "please oh please," the answer is yes.  So I obliged and knelt down next to his bed.  And this was Graham's Prayer:

"Dear Heavenly Father,
Please bless everyone to know that Satan is real.  And Heavenly Father, please protect our spirits.  In the name of Jesus Christ, Amen."

Very short.  Very sweet.  Very profound.  Things that I have, unfortunately, never directly taught him as a father.  In a world today that teaches that there is no wrong, that everything short of murder and abuse is justified, it is amazing that a six-year old boy recognizes that:
(1) there is a real influence out there that wishes us bad.  The great deceiver wants us to make choices that will make us unhappy in this life and in the life to come.    And
(2) That there is a more powerful influence out there who is just as real.  He is our Heavenly Father.  He loves us, and he has the power to protect us.  He won't always protect our bodies from accidents, illness, and the choices that others make with their agency.  But he will always protect our spirits. He will always help us to learn, become better, and make the most of the things that happen to us in life.  He WILL protect our spirits. Those can be untouchable if we choose, and if we ask.

This morning Graham's prayer was again equal parts simple, sweet, and sincere:

"Dear Heavenly Father,
Please bless everyone to have a good and pleasant summer.  In The name of Jesus Christ, Amen."

Here is a boy who is undoubtedly getting stir crazy.  He asks "can we please go back home to McKinney, Texas?" several times each day.  And yet his morning prayer reflects his nature - always concerned with the welfare of others, while ultimately content with the cards that life has dealt to him.  So to everyone readying - please have a good and pleasant summer!

I am so grateful that, like Graham, so many of you have taken the time to pray for someone else.  You have offered up your feelings and so much more for Graham and our family.  And I am very grateful that God has preserved Graham's life, because he is an amazing little boy, and I really feel like the world is a better place with him in it.

Brain Surgery is Scheduled

Graham Update Day 62 (8/9/14)

It's hard to believe that 2 months ago today Graham's head was run over and crushed by an SUV.  He has come so far, and continues to get a little bit better every day.  He does have another brain surgery coming up, and we are hopeful that he will be able to maintain his momentum after the operation.  In this update I'll discuss some of the progress that he is making, as well as discuss the surgery and one possible alternative to opening up Graham's skull again which may arise....

In terms of Graham's therapy, he is making huge strides, especially with his short-term memory.  10 days ago he was really "10-second-Tommy," meaning he would pretty much forget anything that happened even a short while before.  With some drilling and pressure he would remember things, but a question as simple as "what did you do in gym (that's what we call physical therapy) five minutes ago" was impossible for him to answer.  He didn't remember his therapists names, and unless you had really drilled it into him, he certainly couldn't remember anything from the day before.

All that has changed now.  He knows his therapists by name.  He remembers the name of one of his little friends and fellow-patients here.  Today he came back from occupational therapy and said "Dad!  We had a water gun war!"  It's very relieving to see him recover in that respect, as his short term memory, probably more than anything else at this point, will go a long way towards him returning to and succeeding in school.  Another good sign?  His reaction-time and hand-eye coordination, captured in this picture below.

Graham is making great strides physically as well. When Graham first arrived at Cook Children's, he was on orders to not walk at all unless someone was holding on to the gate-belt around his waste.  Last week that changed - he is now free to walk around simply holding somebody's hand.  And were it not for the impending surgery, Graham's physical therapist said she would release him for "standby" walking, meaning he would be free to walk completely unassisted as long as someone was close by.  He can bend over and pick things up off the floor without falling - another huge improvement.

Graham senses the improvement as well.  For a while he would talk about how he was in the hospital "to find get his balance back."  He was reluctant to walk without help.  Now he is constantly trying to release our hand when walking, and occasionally when he gets excited he even tries to run.

The big mountain ahead of us now is Graham's next brain surgery.  He is leaking fluid into his "dirty" sphenoid sinus (pictured below), which means he is at great risk for bacteria to find its way from the sphenoid sinus back to his brain, causing meningitis.  So they are going in to plug the hole from the base of his skull into his sinus.  I'm no radiologist, but I think you can even see the hole in the image of Graham's brain below. (Doctors feel free to laugh at me if I am wrong)

Dr. Braga, who did Graham's first surgery, will perform this one as well.  The neurosurgeon here, Dr. Honeycutt (awesome man), said that there are certain advantages to Dr. Braga doing it, so that's what we will do.  He will open Graham's skull along his existing scar-line - a wave-like incision from ear to ear across the top of Graham's head.  He will then remove the top of Graham's skull, push on the brain enough to expose the leak, and plug it up - likely with a plate.

It will be significantly more "invasive" that Graham's first surgery, so naturally we are praying extra hard that all goes well.  But there is a very small chance that the surgery won't even happen.  I'll explain:

When Dr. Braga first looked at Graham's CT Scans and MRIs from here at cook, he agreed with Dr. Honeycutt that the surgery needed to be done and scheduled it.  In looking back at the images and in discussing it with his colleagues, however, he decided there was a chance that maybe they would not need to open up Graham's skull at all, but that perhaps an Ear/Nose/Throat (ENT) surgeon could plug the leak by going in through the nose lapriscopically.  He said there used to be a doctor at Children's who he thinks could do it, but that doctor is not there anymore.  So Dr. Braga and the other brain surgeons in his group are going to see if there is someone else in DFW who feels they would have a high probability of success in plugging Graham's leak lapriscopically.  If they do, then we will start consulting with THAT surgeon and will inevitably have to transfer to a different hospital for the surgery, and then come back to Cook Children's again for rehab.  I discussed this with my sister, and she brought up a great point - what if there isn't someone who could do it in DFW, but there is in Houston?  or New York?  I know from talking to the EMT who brought Graham from Children's to Cook that they transport internationally, so perhaps there is a doctor out there somewhere who could perform the operation with a high likelihood of success. If there is, I know we can get him there.  So if any of you know any ENT surgeon-gurus who want to look at some CT scans and MRIs, feel free to let me know.  =)

So unless someone comes forth from the woodwork and says "I can plug up that leak in the base of Graham's skull by going in through his nose!" surgery will be Wednesday. Thank you all for your prayers - we know it is a combination of expert medicine and a loving Heavenly Father who have brought Graham this far. On Wednesday Graham faces his most invasive and risky surgery yet , so we will be praying for steady hands and no complications.