My right hand man

First of all, sorry it has been so long.  Benz has been doing really well since I last updated.  He is now 7 months old.  He rolls from back to front, eats some pureed/mashed foods, and is starting to use a sippy cup (but still mostly breastfeeds).  He smiles and laughs all day long.  He really really loves music which is amazing considering that we didn't know if he would ever hear anything.  The Help Me Grow early intervention specialist and occupational therapist still come once a month to see if he is progressing like he should and meeting all his milestones.  They say he is doing well.  We also have had many doctors' appointments.  Most notably a neurology appointment about 2 weeks ago where the doctor said Benz was still doing great.  His social skills are great and he is meeting most of his milestones.  This is the same doctor that told us Benz may never experience the effects of CMV.  He also passed his most recent BAER (hearing) test, which is great news! 

Having said all of that, Help Me Grow and Dr. Maiteh have noticed that Benzen likes to keep his right hand clinched at times.  He also is not passing toys from hand to hand (although since they pointed this out, he is really trying!).  For whatever reason, he favors his left side.  He rolls to the left more often, he mostly uses his left hand, and usually is looking left.  He can do everything with the right, but just prefers his left.  This can mean a lot of things.  Dr. Maiteh checked his other muscle groups & they are all very strong.  So what does it all mean?  The answer is, time will tell.  We're thinking that maybe due to the CMV his brain is not telling his right hand what to do as good as the left hand. He did have the calcifications on his brain and all the brain damage that was shown on his MRI at birth - that could be causing this.  That is why we need to continue to pray for Neuroplasticisty.  His brain needs to create new paths around these damaged areas. We will work with him everyday.

We are finally getting Benzen baptized on December 23 which is my birthday.  We found it fitting that it is my real birthday and his birthday into his journey with God.  A lot of you may not know this about me but I was first baptized as an adult.  I was 25 when I was baptized.  I made the choice when my sister Leigh and brother-in-law Adam asked me to be Hudson's Godfather.  This was around the same time Amy and I found out Remington was going to be born with Down Syndrome.  I wanted to be a Godfather that was baptized and be a father that was baptized because I knew at that time my life was going to change.  I wanted to be as prepared as I could be and I knew I needed Gods help.  So please continue to pray for Benzen.  Specifically that his right side gets stronger and he continues to pass his hearing tests.  So, he truly is my right hand man in more ways than one...

Goodnight,

Ben

Miracle Baby

We had our follow up appointment with Dr. Maiteh today.  He gave us the best news to date.  He said Benzen's muscle tone, awareness, and all around social skills are great.  Then he said 6 words that may have changed my life, "I think he's gonna be OK."  Amy & I immediately asked what he meant by that.  He told us that from what he sees now, he does not think Benz will ever be affected by the CMV.  WHAT??  He went on and on about how he can't believe how well Benz is progressing.  He said that Benz might just be the rare case in which he doesn't end up having any effects from the virus.  Is our luck turning?  Is this going to be the first time in our lives that we are in the small percentage for our favor?  Then he said two words I thought I would never hear about Benz in his whole life, which were "He's advanced"! - talking about his social skills like laughing, identifying voices, etc.  I immediately was teary eyed.  In the same way that bad news hits you like a ton of bricks, good news does too.  I hadn't heard good news like this in a really long time.  It got to a point where I only knew how to process bad news.  It took me a second to collect my thoughts.  What did he say?  How did he say it?  What did he mean?  Is this only for right now or his whole life?  Its almost like when you get bad news time slows down and you get that dreaded tunnel vision.  When I got this good news time started flying, my mind racing, and questions formulating.  I couldn't wait to tell my family.  We are finally leaving a doctor's appointment with good news.  We know that our family members are all white knuckled gripping their cell phones until they hear from us.  I got in my car and I couldn't call a soul.  I couldn't speak.  The silence filled my car and it was loud.  I could feel my heart beating again, fresh blood was filling veins, and I could taste fresh air again.  I know we are not completely out of the woods yet but it felt good to feel good today.
So then my reflection on this whole experience started.  Why did we have to go through this?  Why did he have to get sick?  What made him better?  I know that God had a hand in all this (a big hand!) and it's easy for me to see that Remi was looking out for her little brother to help him get better.  The hard part then is why did he even get sick?  Then I realized that doesn't really matter.  What matters to me is...What did I learn?  Did it make me a better person?  Did it make others around Benz better people?  Well, what I learned and will continue to learn would probably fill a book.  I was telling my family last weekend that I feel like I am the main character of the movie "The Truman Show" with Jim Carey. I feel like the whole world is watching me to see how I will react to different situations.  I get an unexpected character test at least once a week, like the coffee lady and the guy I helped with sign language, plus I have a sunglasses story, and a Tim Hortons story to tell you all sometime.
Regardless of what Adam says, I am going to recommend a song in this post.  I won't post the lyrics ok Adam?  The song is another remake.  It is by Sara Bareilles called "In your eyes".  Again, another song that has nothing to do with my situation but I turn it into pertaining to me and Benz.  I like the lines that say "In your eyes I can see the doorway to a thousand churches, In your eyes I can see a resolution, and I look to the time with you that keep me awake and alive.
All I can say is thank you all for your prayers and support.  Keep praying for my little man.
And in case I don't see you...Good afternoon, good evening, and goodnight.
Ben  

Pray and you shall receive

This is Amy's Face Book Post from 8-7-12...Benzen continues to surprise everyone! As of today, the audiologist says his hearing is normal, the cardiologist says his heart is normal (the hole closed up), the neurologist says he is doing great, the ophthalmologist says his eyes are perfect, the pediatrician says he's perfect all around, the early intervention specialist says he's doing great, and the occupational therapist says he's meeting all his milestones. In other words, each day, Benzen continues to amaze us & we are reminded what a true miracle he is. Our God is amazing! Please pray for continued good news (we have an EEG scheduled for Friday to check for seizures)!

All of this still holds true.  Today we finally got the EEG results from 10 days ago.  I have been a nervous wreck anticipating these results.  This test tells us if Benz has "slow firing" in any areas of the brain, and seizures or epilepsy.  The nurse who called with the results said "the EEG was slightly limited due to movement and lack of stage 2 sleep, but what the doctor could see was completely normal, and the dr. saw enough to recommend no further testing at this point."  GREAT NEWS!  Benz is truly a miracle.  I have not read one story about a CMV baby having this good of results at this point.  I am beginning to think that the clinical drug "Cytogam" that Amy had twice while pregnant did work.  I am so thankful for Dr. Hnat who found this early enough in the pregnancy to try this drug.  I would say we got so lucky, but Dr. Hnat would probably say it was skill.  He's probably right.  Heres a little check list...Ears=good so far, eyes=good, head size=good, heart=good, eeg=good, no cmv rash, and his mobility is good.  The only negative was the abnormal MRI.  All in all he is a great little boy and a true blessing!

I had a couple of good stories and songs from the last week and a half, but my brother-in-laws Adam Pancoast and Ross Stambaugh said the songs get boring and they stop reading when they get to the songs - LOL!  So I am going to leave them off this week.

Since so many people have been praying for us & Benzen and we obviously have seen the power of prayer, I have a special request for each of you.  Please pray for a girl named Mandy as she is very sick and in the hospital.  She has a VERY long road ahead of her!  Mandy is truly an amazing woman & I have never even met her - just her parents, who are amazing as well.  Thanks!

 Have a good week everybody!  Ben

Another Unique Situation

Benzen will be 3 months old tomorrow.  I know I say it every week but, he is really coming into his own now.  He is starting to smile, sometimes laugh, and as you can see hold his head up pretty well.  These are all great mile stones he is meeting.  They seem so simple and so routine but in Benzen's case they are not.  We went to see Dr. G on Monday and Benz weighed 11pounds 8ounces.  Dr. G said he looks perfect.  He also ordered blood work for Benz.  The result came in today and his blood work was very good.  We can stop his iron supplement, multi-vitamin, and reflux medication.  One of the major mile stones the neurologist told us he would look for at 4 months was head control.  Dr. G said that looks very good too.  His neutrophil number is still 2,600 which is considered normal.
Today we went to see the surgical team at St. V's.  We were first seen by the surgeons PA, whom Benzen told me he had a crush on because she was pretty(I wasn't paying attention).  Then the surgeon came in and he was very nice and really informative.  We told them our story and they were very empathetic.  They took the time to explain everything to us, listen to us, and we never felt rushed.  After the surgeons exam of Benz, we had yet again another unique situation on our hands.  He could not see or feel his hernia, but said from what we described and the pictures we showed him, that he is pretty sure it's a hernia.  The problem is he still has a testicle that has not fully descended.   He would like to wait to fix the testicle issue until after Benz is one.  But, the hernia needs fixed sooner than that.  We could do the hernia surgery now but that means we would have to fix the testicle placement at the same time, which can be troublesome.  We decided to wait and keep an eye on the hernia.  If it flares up again we will take him in.  If it doesn't we have to go back anyway to make sure the testicle descends and revisit our options.
I have been thinking a lot about my grandma Sandy (Bubbe) lately.  She passed away in March of this year.  She loved Beyla so much and I just wish she would have got to meet Benz because she would have loved him so much too.  I try to live up to what she left behind as her legacy.  She was loving, funny, and most importantly selfless.  When Amy and I got the news Benzen would be born very sick our world was rocked on top of that my Bubbe was taking a turn for the worse.  She was in the ICU in very bad condition.  She was intubated, so she could not speak and could not write.  One day my dad went to visit her and was giving her an update on Benz.  After their talk she, with all her might, wrote Amy a note.
Dear Amy:
I was going to ask you for help, but you need mine more.  My heart weeps for you and Ben.
Love,
Bubbe
She was going to ask Amy for Speech help when she would be un-intubated.  This is the kind of selflessness I am talking about.  No matter what is going on in my life my kids are first.  That short note will make me a better man forever.

Neurologist Appointment

We met with one of the neurologists that read Benzen's MRI.  He was one of the people that told us benz would never be a "normal" boy.  I was so nervous about what he would have to say, but couldn't wait to hear it.  We got there and first of all they weighed him and he weighed 11pounds with his clothes on, but still, he's growing up too fast.  Then Dr. Maiteh came in.  He gave Benz a once over and asked us some questions.  The results were that Benz was doing better than expected.  Benz is right on track.  All in all Amy and I think this was a great appointment.  Dr. Maiteh even said to us "I was really worried about this boy when I saw him and the MRI when he was in the hospital.  I am glad to see he is doing so well.
On the MRI they saw periventricular calcifications and abnormal White and grey matter.  The Dr. will order another MRI in a couple of months to see how it looks as Benz grows.  The possibilities are, the calcifications could go away and leave behind a scar.  They could stay the same.  They could get bigger. Or the best case would be for the calcifications to be gone and leave no scarring.  Obviously, this is what we are hoping for. 
Benz is still a great baby.  He is getting so big.  Its hard to believe he gained 5 pounds in 2 months.  He has an ophthalmologist appointment this week.  Beyla is still completely in love with him.  She has to kiss his head and all of his toes a couple times a day.
The pic above is Benz on the pontoon boat this morning (and we are docked, otherwise he'd have a life jacket on, of course!).  He loves to be outside.  The pontoon boat is called Remi's ride.  When Remington was in the hospital my dad promised her a new pontoon boat.  We went and bought it a month or so after she died.  We all love to take those long slow rides and think about her.  She would have been 3 this summer.  I think that Remi is watching over Benz and  pulling some major strings.
Good Night,
Ben

Just to keep things interesting...

Just to keep things interesting, a couple of days ago Amy was changing Benzen's diaper and noticed that his groin area was swollen.  She called Dr. G and he said it sounds like a hernia bring him in and I'll check it out.  We got there he checked it out and got a smirk on his face.  He said "I don't know why all of this stuff happens to you but it does.  It is an inguinal hernia and it needs surgery.  We took a couple of minutes to discuss our options.  The options are to have it at Toledo hospital or St. V's.  http://www.webmd.com/digestive-disorders/tc/inguinal-hernia-topic-overview (copy paste this link to learn more)  
For those of you who don't know, Amy and I lost our baby Remington after a surgery for Hirschsprungs disease.  She went in for her surgery at 13 days old and passed away at 24 days old.  This all happened at Toledo hospital, and if we went back there it would be the same group of surgeons.  So sending Benzen into surgery is not something we are taking lightly.  We are going to meet with a couple of different surgeons and make the best decision we can.
We are going to meet with the surgeons at St. V's first.  We are going to meet with them on July 31st.  This is good because it will give Benz some time to get bigger and stronger.  If that meeting does not go well, we will have to find another hospital. 
I can't believe we have to send another one of our babies to surgery so young.  I also can't believe that we have to choose between a hospital where we lost our first born and a hospital we have never been to before.  Here are my thoughts.  Am I a coward for not wanting to have the surgery at Toledo?  Everyone deserves a second chance right?  Am I running from what could be the best option because of what happened in the past?  I know God will give us strength and help us to make the best decision we can.  Having said that, I know everything will be just fine.
Benzen is starting to come into his own.  He started to smile a little yesterday and today.  He also rolled over a couple more times.  He seems to love to go to the lake.  He likes being outside in the warm with a little wind.  We have taken him for a raft ride (which he slept the whole time) and a speed boat ride he seemed to enjoy.  
We are heading up to the lake for fourth of July festivities, my aunt Kay's 60th birthday, and my little sister Ashley's 24th birthday.
I hope everyone has a safe and fun 4th!
Ben 

The power of sign

Benzen is now done with his Valganciclovir.  Last Thursday was his final dose.  As we suspected he seems to be feeling better.  He is a little less grunty, eating more, and sleeping better.  He is starting to look more like me, meaning he is getting chubby.  Since we stopped the meds he has had a blood draw that told us his neutrophil number was up over 4,000.  That is good news because that means this number will continue to go up on its own. 
Since his numbers are looking good we are able to be around people again.  We went to the lake and had a great time.  The Bolyard and Pancoast boys finally got to meet Benz.  I couldn't believe how much they had grown since I wasn't allowed to really be around them either.  Zae Zae and Hudson are getting so big, and if you know Eli you know he's a big boy.  It will be nice to see how they all interact growing up. 
Now on to a story.  I went to a gas station to pick up a drink.  There were two people ahead of me.  The person first in line had hearing aids in and appeared to be pretty severely hearing impaired.  He said to the clerk "bathroom?"  The clerk pointed to the corner of the station.  Then the man said "where's the key?"  The clerk did not understand. The man asked again "where's the key?"  The clerk then said "oh sorry, it's unlocked."  Then the man could not make out what to clerk was saying, the clerk said "it's unlocked, unlocked, unlocked" while trying to mouth the word so he could read his lips.  I could see that they were both starting to get frustrated.  I said to myself "you have been practicing sign language for a while now, you can help this man."  I walked up, tapped the man on the shoulder, and signed to him the letters for "unlocked" with my hand.  The man lit up and signed and mouthed "thank you" to me.  I could not believe that I did it.  Benzen was on my mind the whole time.  Is hearing impairment in his future?  Will he struggle to communicate through out life like this man?  I became so overwhelmed with emotion, I paid for my drink and went to my truck.  I had been talking to my mom when I went in so I called her back.  I could barely tell her the story.  I was crying and I really didn't know why. It could have been that I just helped a deaf man and I was proud of myself.  It could have been the thoughts of Benzen that were flashing through my mind.  Both I guess.  Looking back I would do the same thing and I'm proud that I was able to help him.  Just another way how Benzen has really had such a positive impact on me and my family already.  I can't wait to see what the future holds.
Good night,
Ben

3 more doses

Benzen is still doing very well.  Last Thursday Benz weighed 7 pounds 12 ounces.  That's crazy he is gaining wight so well.  He was born at 6 pounds even.  He had a cardiac echo on Friday and the results were good.  His VSD (hole between the ventricles in his heart) was still there but very small.  Dr. Butto said he is not even worried about it because it is so small.  The tiny VSD does cause a small heart murmur.  He said that Benz should not need any form of surgery for this.  This was really good news.
Thursday is his last day for his Valganciclovir.  He only will get his morning dose on Thursday, so he really only has 3 more doses.  The infectious disease doctor ordered her last blood work for Benz.  His neutrophil number was 1500 which is OK considering he is done with his meds that have been keeping it down on Thursday.  Bummer and I think Benz will be a new boy when he is off these treatments.
Help Me Grow has come to our house a couple of times to do Benzen's evaluations for physical therapy and occupational therapy.  They said he was right on track with what he needed to be doing.  His muscle tone was good.  They will now only be coming once a month to check his progression.
I can't believe it has been seven weeks already!  He still only seems like a three week old because that's how long he's been home.  He still hasn't even met his cousins yet.  They are all chomping at the bit to meet him.  It is my moms birthday this weekend and we can't wait to get to the lake and start having some fun in the sun.
Beyla is still obsessed with Benz and she is a really good helper.  Anytime he cries she is right by his side to say "it's ok Benzen, it's ok Benzen" or "hi Benzen, hi Benzen".  They took a bath together for the first time this week and she thought it was hilarious.
Sorry no life lesson or song tonight.  I know boring right.
That's it for now,
Ben

Wonderful World

Benzen has been doing really well.  We have had him home for two weeks now.  His blood work came back for this week.  His neutrophil number was 1300 up from 1000 last week but still not in the normal range.  His hemoglobin was down so they are considering giving him more iron than we already do every morning.  I really feel like this valganciclovir makes him feel run down.  I think that when he is done with these treatments he will feel like a whole new person.  I have heard and read that chemo really takes a toll on the body.  He just seems uncomfortable at times.  He may be a little gassy too.  Beyla still loves him to pieces and kisses his head every 5 seconds. 
We have contacted a girl that Amy knows from Liberty Center to help us learn sign language.  We just want to be prepared in case Benz does lose his hearing.  Plus I have always wanted to learn another language so now is the right time.  I think it will be fun, Beyla will enjoy it, and help us in the future.  Just with Amy's help I know the alphabet, can count to ten, and about 20-30 other signs. 
The Help Me Grow program came today to evaluate Benz.  They said he looked really good. Everything is right on track. We will have a therapy evaluation next week.; They also said his muscle tone was good.  It may have been a fluke but he has rolled over front to back twice now.
I have had day dreams about Benz being super human.  Maybe the enlarged ventricles and calcifications on his brain are going to make him super strong and super smart. Maybe all this time I have been worrying he wont be a typical boy will be wasted time and he will be "boy wonder".  I am always quickly brought back down to reality but that's OK.  Like the Billy Joel song says "I love you just the way you are."  His meds should be done on June 21st if we don't have to stop them.  Then we can take him out in public and he can make some friends.
The song I have been listening to a lot lately is James Morrison - Wonderful World.  The part where is says "Well I thought I was doing well, but I just want to cry now" is pretty much me on a daily basis.  Its that moment when things are going well and you start to get comfortable and then all of a sudden it hits you, this could be a very difficult life for Benzen.  But I won't let it, I can't let, We will be prepared for what ever comes are way.
Goodnight everybody,
Ben

James Morrison - Wonderful World
I've been down so low
People look at me and they know
They can tell something is wrong
Like I don't belong

Staring through a window
Standing outside, they're just too happy to care tonight
I want to be like them
But I'll mess it up again

I tripped on my way in
And got kicked outside, everybody saw...

And I know that it's a wonderful world
But I can't feel it right now
Well I thought that I was doing well
But I just want to cry now
Well I know that it's a wonderful world
From the sky down to the sea
But I can only see it when you're here, here with me

Sometimes I feel so full of love
It just comes spilling out
It's uncomfortable to see
I give it away so easily
But if I had someone I would do anything
I'd never, never, ever let you feel alone
I won't I won't leave you, on your own

But who am I to dream?
Dreams are for fools, they let you down...

And I know that it's a wonderful world
But I can't feel it right now
Well I thought that I was doing well
But I just want to cry now
Well I know that it's a wonderful world
From the sky down to the sea
But I can only see it when you're here, here with me

And I wish that I could make it better
I'd give anything for you to call me, or maybe just a little letter
Oh, we could start again

And I know that it's a wonderful world
But I can't feel it right now
Well I thought that I was doing well
But I just want to cry now
Well I know that it's a wonderful world
From the sky down to the sea
But I can only see it when you're here, here with me

And I know that it's a wonderful world
I can't feel it right now
I got all the right clothes to wear
I just want to cry now
Well I know that it's a wonderful world
From the sky down to the sea
But I can only see it when you're here, here with me

And I know that it's a wonderful world
When you're with me

http://www.azlyrics.com/lyrics/jamesmorrison/wonderfulworld.html

Chugging along

Benzen has been doing great at home.  We still are giving him his Valganciclovir twice a day at 9:am and 9:pm.  We also give him a multivitamin and Iron supplements every morning.  We went to Dr. Gladieux yesterday.  He said Benz looks great!  He said he's perfect, and if we didn't know he had CMV we wouldn't be looking at things in such detail.  He said his color, muscle tone, and attentiveness was perfect for now.  I really like to hear that.  I have known Dr. G for a long time, he was my doctor since I was a toddler.  We have become great friends.  Which has made it tough for him to have to give Amy and I the worst news you would ever have to give someone.  He was Remi's doctor, he is Beyla's doctor, and now Benzen's.  Obviously, he loves giving us the good news but has delivered the bad as good as someone could considering the circumstances.  He is truly emotionally involved with our family and that really means a lot to us. 
Last night we got the call that Benzen's blood work from yesterday morning was in.  They said his biliruban was down to 3.5 which is good.  His neutrophil number was down to 1000 though.  That is not so good.  If it goes down to 500 we have to stop the Valganciclovir, and give him GCSF to bring his neutrophil count up, and then restart the Valganciclovir.  This means he is still really susceptible to infection.  Hopefully his neutrophil number rises or at least stays the same so we don't have to stop his meds. 
Today Benzen had another retina scan at the ophthalmologists office.  He said that he rarely sees congenital CMV cause chorioretinitis (which is what we are worried about causing vision loss over time).  Which Amy's reply was "that is not good news for us, because we always get the rarities and are always in the smaller side of the statistics."  The ophthalmologist said that Benzen's eyes look great and he will look at him again in six weeks to look at his eyes again.  He said babies are naturally susceptible to infection and taking into account the meds he is on and his neutrophil number being low, he wants to look at his eyes again a couple weeks after the meds are done.  His meds should be done June 21st if we don't have to pause them for any period of time.
The pictures you see above were taken by Diana Cooper.  She is Diana Lynn Photography.  She has done an amazing job taking pictures of our children!  The above two pictures are only sneak peaks as she prepares the rest of the pictures from Benzen's photo shoot.  Please check her out at http://dlynnphoto.com/ or on Facebook at http://www.facebook.com/dianalynnphoto.  Thank you Diana we can't wait to see the rest of Benzen's photos!
Good night everyone.  Keep the prayers and positive thoughts coming because they are working. 
P.S - I chose to call this post Chugging along not only because it fits but also because every morning Beyla wakes up and she says "a mornit (good morning) dadda.  Where's momma?  Where's Benzen?  I Watch Chugging?"  Which means we have to watch the open song of Chuggington on the Disney junior channel twice then go eat breakfast.
Ben

Defying Gravity

This is Benz getting a bath at home finally.  We have been home for almost a week now.  It really feels like our life has always been this way.  It's comfortable.  Benz had to do two blood draws this week.  His numbers went up and down as expected.  Nothing is really too far out of the ordinary.  We had to take him to the infectious disease doctor on Friday.  This doctor is located in the specialty clinic next to Toledo Hospital.  It was a very humbling experience to sit in the waiting room with all the children in wheel chairs, braces, and children living with all forms of special needs.  I was in deep thought the whole wait.  "Is this what my future holds for me?"  This hurry up and wait process is driving me nuts. 
This is a little excerpt from the song Defying Gravity from the musical Wicked...

Something has changed within me
Something is not the same
I'm through with playing by the rules
Of someone else's game
Too late for second-guessing
Too late to go back to sleep
It's time to trust my instincts
Close my eyes: and leap!

It's time to try
Defying gravity
I think I'll try
Defying gravity
And you can't pull me down!

GLINDA
Can't I make you understand?
You're having delusions of grandeur:
[ Lyrics from: http://www.lyricsmode.com/lyrics/w/wicked/defying_gravity.html ]
ELPHABA
I'm through accepting limits
''cause someone says they're so
Some things I cannot change
But till I try, I'll never know!
Too long I've been afraid of
Losing love I guess I've lost
Well, if that's love
It comes at much too high a cost!
I'd sooner buy
Defying gravity
Kiss me goodbye
I'm defying gravity
And you can't pull me down:

This really has nothing to do with my situation again but somehow I hear these lyrics and make it pertain to me.  Because I am through with playing by the rules of someone else's game.  I am playing by the rules of my game and the only rules of my game are to "defy gravity".  Also, I am through excepting limits cause some says they're so.  We are going to meet and exceed all limits.  Just when I think this virus has a hold on me as well as my son I find something to draw inspiration on.  The inspiration is all of you sending thoughts and prayer, songs that randomly come on the radio, most recently I had a woman facebook message me that I was her hero, just from reading my blog.  WOW.  That made me feel so good. 
I wish I had more updates for you.  I'll keep you posted as time goes on.
Good night,
Ben

Happy to be home

We have been home now for 3 days.  We are having a blast.  Benz is such a good little guy and Beyla absolutely loves him.  Every five minutes she says "I wanna kiss hims head".  She is so sweet to him.  She wants him to lay on the ground with her, sit at her card table, and basically just do what ever she is doing.  The first day home Beyla was amazed when I got her out of her crib in the morning and brought her into Amy and I's room, that Amy was finally home.  Then she heard Benzen grunt and was so happy. 
We have to give Benz Valganciclovir twice a day.  We give it to him at 9 am and 9 pm everyday.  It must taste OK because he drinks it just fine every time.  He has to have his blood drawn twice a week.  On Monday was his first blood draw and he will have another on Thursday.  His first blood work told us that his neutrophil number went up to 6600 remember this is the number that was at 200 but is supposed to be 25,000.  His neutrophil number is going up and we have not been giving him the neupogen in 4 or 5 days.  That is good news.  You would not know he has CMV if you met him, Amy and I forget everyday.  He is just too perfect.  If something show up in the future, we will cross that bridge then.  As for now we are living it up with him home.
Yes we are home from the hospital which is great.  However we do have a doctors appointment just about everyday.  He has to see the Infectious Disease doctor, Ophthalmologist, Cardiologist, Pediatrician, Neurologist, Audiologist, and more plus do his blood draws.  This is the start of a new life for Amy and I. This will be a challenge to say the least, but to us more like an honor and a privilege.  My favorite bible verse is Matthew 25:35-40, a brief description is here ( http://www.biblegateway.com/passage/?search=Matthew+25%3A35-40&version=NIV).  Basically, we are all Gods people and we all should treat other that way.  I can't wait to raise Benz.  I have already learned so much about myself and learn more everyday.  I can't wait for you all to meet him and when you do he will change your life.  When he gets the go ahead to be around people again we will have to get a calendar to keep all of his appointments with his new friends.
Good night!
Ben

Home Sweet Home!

 

Where to begin?  Two days ago the doctors agreed to give Benz the GCSF to bring his neutrophil number up.  They gave it to him when his was 300, keep in mind the normal range is from 5,000 to 25,000.  The day after they gave it to him his number went to 1,300.  They gave it again yesterday and today his number was 5,000 - which is a great improvement.  So, Thursday I left work early because I was worried sick about Benz and Amy, Friday we had what we know now as our last slumber party in the hospital, Saturday we took Beyla to the mall then went back to the hospital, and today found out we would get to come home.  It's just all been such a roller coaster ride.  Sunday(today) was Beyla's day to visit Benz in the hospital.  I drove her up to the hospital at 10:00 am.  When we got there Amy said "look Beyla it's Benzen.  Do you want to take him home...today?"  I couldn't even respond.  I was overjoyed but could not even react to the news.  I was flooded with questions in my mind, I was truly unprepared for this day to come so soon.  After a long discharge and four trips to the car to unload our room of all our belongings and goodie bags (in flip flops), we put both kids in their car seats and headed for home.  The whole way home I would look at Amy and say "I feel like we just broke out of prison or something."  We both just had very weird sensations.  

After we got home we decided to surprise our families.  So that meant I had to put all of our stuff from our hospital room away in about a half hour/hour.  Amy's parents got here first.  I stood and talked with them in the living room and pretended to work on our "broken" video camera until Amy walked out carrying Benzen.  They were shocked and overjoyed.  Then my parents came over and we surprised them in a similar fashion.  Needless to say they were so excited as well.  

Now that we are home we have to give Benz Valganciclovir twice a day for the next 24 days.  We also have to take him to a promedica lab to get a CBC (complete blood count) every couple days and will have several doctor's appointments each week.  His visitors are still limited to immediate family and still no kids.  As soon as the medicine is done Benz would love to meet you all, as long as you wash your hands.  

The power of prayer is so incredible.  I think back to May 2nd.  We got news that was just devastating.  My son, my football player, my wrestler, my track star, my new best friend, and more was most likely going to have many challenges in life.  I wanted so bad to blame God.  But like I said I couldn't.  I was reminded today, that keeping the faith will always pay off.  I hope and know that it will pay off through this whole journey with Benzen.  I remember in my "fathers eyes" post, there was a picture of Benz and I looking each other in the eye and he said to me "ok dad, we got this far.  Whats next?"  Well I got him home.  That was my next goal and I can't believe I was able to achieve my goal almost three weeks early.  I hope that this is how all of our milestones go.  I know that they all won't but I will try my best.  

I feel like people who are released from the NICU are released with a healthy baby.  I feel like we were released and most of our concerns are yet to come.  Don't get me wrong, I am so glad to be home, just worried about how this whole experience is going to play out.  I'd say from my last post about "how do you eat an elephant?  One bite at a time"  We have taken one bite of a two ton elephant.  Thank you all so much for all the thoughts and prayers.  Keep them coming because they are working!!

Good Night,

Ben

Quick Sand

Well, again a lot has gone on in the last two days.  Starting with Tuesday.  The Docs told us that they all agreed that since it was taking Benz too long to get his neutrophil number up on his own, that they recommend not starting the ganciclovir again at all.  Before we thought that they would give it to him again once his neutrophil number came back up.  The Docs told Amy and I it was our choice on what to do.  Start it again or not.  They said that they believe the positives of the ganciclovir are over shadowed by the negatives of having a low neutrophil number for too long.  We do not want him to get another infection.  Amy and I struggled with this decision all day yesterday.  Amy had a meeting with the infectious disease doctor, neonatologist, his nurse for the day, and one or two other docs.  That is when they told her all of this information.  She called me at work to fill me in.  She told me all of this information and that one doctor said "we already know he is going to me mentally handicapped, does not starting the medicine again and possibly having a 2% hearing loss make a difference?"  (paraphrased from what I remember her saying)  That really hurt me, and I knew it hurt Amy.  I drove to the hospital as soon as I could to be with her.  The weird part is, I have been asking a doctor to say that to me for 3 weeks now and they would not, they would say "time will tell."  So the fact that I did not ask one of my probing questions and someone said it on their own caught me off guard.  I immediately got defensive. After 24 hours I now appreciate the honesty.  We are going to try prove her wrong, but I appreciate the honesty.
Today, is a whole new story.  Sorry for wasting your time in the first paragraph, but if you want a look into this whole process, you got it.  Amy and I have been in constant contact with Doctor Adler of the university of Virginia Common Wealth who has dedicated his studies to CMV and also Doctor Kimberlan of the University of Alabama, he dedicated his studies to ganciclovir.  These two have been so very helpful.  Amy put Dr. Kimberlan in contact with our Infectious disease doctor and they came up with a new plan.  More like Dr. Kimberlan said "this is what we are going to do from now on."  He suggests starting Benz on valganciclovir which is an oral version of ganciclovir.  This valganciclovir does not make the neutrofil count drop like the ganciclovir does.  So now when Benzen's neutrophil count goes above 500 they will start the valganciclovir.  I can say that I don't want to see my son going through Chemo again, but I think that the medicine will help preserve his hearing, vision, and help in his all around development.  Like I said this is an oral medicine.  Best case scenerio we can bring Benz home and give it to him.  We would have to be extra cautious about infections.  We would also have to take him to the hospital once a day or at least every other day.  But, he would be home.  Who knows what will happen tomorrow.
This is a total roller coaster ride and not a fun one.  You can not believe the information exchange on a daily basis.  That's where my quick sand comment comes in.  This whole experience can swallow a person up.  It starts with your brain.  The doctor sits you in a chair and says "we found some serious abnormalities in your pregnancy."  You immediately get tunnel vision, your mouth goes dry it's hard to breath, and you feel nauseous (you will vomit when the meeting is over).  The only thing to do is grab a pen and paper and hope you can write, because you know you will have to explain this to 500 people.  After the meeting your chest will hurt. Are you having a heart attack or does your heart hurt for your wife, daughter, and soon to be son?  After pacing around for the next couple months your legs and feet ache.  Once you get out the quick sand and things are looking better, there is more the next day.  The only cure for "quick sand" Faith, Family, and Focus.  Well I guess it's now the three F's of quick sand haha.  I know now that this CMV will be what we let it be.  We are fighting everyday to make the best decisions so that Benz has the best shot at a normal life.
I'll leave you with one of my favorite sayings and a song today, double whammy.  The saying is "How do you eat an elephant?  Answer-one bite at a time."  It's just a funny way a saying, take life one step at a time.  The song was sung by Phillip Phillips the American Idol winner.  It's called "Home". Just listen to it and you will understand why I like it.   Not sure who sang it originally, but Philip saying very well last night on Idol.
The picture above is the basket Amy and I made from some of the goodies we got less than 24 hours after we put it out.  So, it went to a good cause.  We truly appreciate everything everyone has done for us.
Goodnight,
Ben

Don't be mad

Benzen had an eventful couple of days.  His white blood count has been up and down.  Never high enough to start the meds again.  His count was so low today that they decided to take his picc line out again because they did not want any infection to be able to seep in where the picc line was.  The doctor on tonight told Amy that they are trying to decide whether or not to give Benzen the rest of the doses at all.  There is some confusion on what they should do.  1. They could not start the meds again, and we go home when Benzen's white blood count comes back up.  2. If his white blood (when I say white blood count I mean "Neutrophil") count can come up to 750 on its own, they can start the meds again.  If at that point they fall again below 750 they wait for them to come back up and start him at a half dose.  If after the half dose it falls again they will stop the meds.  3.  They may have to give him a medicine to stimulate his bone marrow to make more Neutrophil.  Then revisit how they start his meds again.  This is good news because he might get to come home early.  The bad news is he might not get all the doses of the medicine that can fight off the infection and decrease the chance of hearing and vision loss.  As much as I want him home, I think he needs the medicine.  With his picc line out, Amy was able to put an outfit on him tonight.  She has been dying to do that.

So, please don't be mad at us.  We have been in the NICU since May 2nd.  We see all the other people in the NICU without a great support system like all of you.  We truly truly truly appreciate all the food, but we can't eat all of it.  So, we made an R Angel basket out of some of the food and snacks that were given to us.  Amy and I put this basket in the family waiting room.  Not only was there a line up before we were done setting it up, but I checked on it and hour later and it was half gone (pics above)!  As much as it meant to Amy and I, it also meant a tremendous amount to the other people in similar situations as Amy and I. 

Please keep the prayers up for Benz.  I don't know what is in store for him.  I worry about him every second of everyday.  I pray for him to be as high functioning as he can be.  I pray for strength.  I pray for him not to get picked on.  I pray that he will not need any surgeries.  I pray he will not lose his hearing or vision.  I pray that, as his dad, I can be what my dad is for me.  I pray for much more but try to live as close to one day at a time as possible.  God doesn't give you what you can't handle, so I know I can handle this.  He must think I can handle a lot, and I can.  I would not trade this life or any part of it for anything.

Thanks for Listening,
Ben

I don't have to be strong enough

Benzens white blood count went down again.  This is not good because obviously we want it to go up, so he doesn't get an infection.  But, it also limits Benzen's visitors until it comes back up.  He has been off of the medicine for a couple days now and to me he seems a little more alert (not pictured above).  His Biliruban has stayed the same for a while now, which is OK.  It should start going down on its own now. He has been off of photo therapy for almost a week now.  I don't think I knew the answer to this last time but, six weeks should be the longest he has to stay in the NICU.  So, how ever many more doses they can get in, in the next 4 weeks will be all he gets.
It still is unreal everyday that I have to ask doctors how severe Benzen's mental capacity will be effected.  It hurts inside every time I have to ask, and I ask everyday to see if I can get a real answer.  This answer is always "its a waiting game."  I am a huge Universe nut.  It is mind blowing that we can land on the moon, prepare to land on Mars, or we can even see 10 billion light years away.  But, we can't look at an MRI here on earth and get answers.  Again we look to all the positive sign we know about mentioned in previous posts.
Amy told me about a couple of songs that she knew I would like.  The one for tonight is by Matthew West called Strong enough.  It reminded me that I am not alone in this.  I have all of you and God.  Becuse "I know I am not strong enough to be everything I am supposed to be."  I don't have to be.  I have my support team.  I look at another one of my best friends (Billy Witt).  He was in the Army and even fought for our freedom over seas.  That's a guy strong enough.  He fought for me to be able to sit safe and sound in a NICU room.  I can't believe the courage and strength that would take.  I appreciate what he and the rest of the forces have done and will do for all us everyday.

Happy Anniversary to my mom and dad 33 years!
Ben 

Sorry for the bad formatting...Here's the Lyrics
You must You must think I'm strong  
To give me what I'm going through
Well, forgive me Forgive me if I'm wrong 
But this looks like more than I can do On my own
I know I'm not strong enough to be everything that I'm supposed to be I give up I'm not strong enough 
Hands of mercy won't you cover me Lord right now I'm asking you to be Strong enough Strong enough For the both of us
Well, maybe Maybe that's the point 
To reach the point of giving up
Cause when I'm finally Finally at rock bottom  
Well, that's when I start looking up And reaching out
I know I'm not strong enough to be Everything that I'm supposed to be I give up I'm not strong enough 
Hands of mercy won't you cover me  Lord right now I'm asking you to be Strong enough Strong enough
Cause I'm broken Down to nothing But I'm still holding on to the one thing You are God and you are strong When I am weak
I can do all things Through Christ who gives me strength And I don't have to be Strong enough Strong enough
I can do all things Through Christ who gives me strength And I don't have to be Strong enough Strong enough
Oh, yeah
I know I'm not strong enough to be Everything that I'm supposed to be I give up I'm not strong enough Hands of mercy won't you cover me Lord right now I'm asking you to be Strong enough Strong enough Strong enough

http://www.metrolyrics.com/strong-enough-lyrics-matthew-west.html

Keepin the faith

A couple of updates from the last two days.  Benzen's picc line had to come out yesterday morning.  When they put the picc line in they covered it with the proper coverings however they forgot to cover the part that attaches the IV tube to the part next to his skin.  This is very bad and could've caused a serious infection (hopefully it didn't already).  They left his picc line out for about a day and half/two days, they put it back in at 11 am this morning.  After they were able to get his picc line in they had to do his daily blood draw.  Guess what?  Remember me telling you that if his white blood count fell low enough that they would stop his medicine until his white count came back up?  Well that happened today.  His white count fell and they stopped the medicine until his white count comes back up.  This stinks bad for a couple of reasons.  I am not sure if this will keep Benz in the NICU longer so that he can get all of the required doses.  Also, if we would have known that before they re-put his picc line in, they would not have had to put his picc line back in until they were ready to start the medicine again.  This would have made it easier to hold him and play with him for the next couple of days.  Our spirits are still high and I can't wait for the weekend when I can spend the night and have a slumber party with my little guy.
I am so glad that I have this blog to update.  I like having everyone get all the facts right from me.  I have not heard one rumor about Benz and I am very happy about that.  Another thing my dad always said (baahaha)(I didn't know I had so many "my dad always told me's")  He always said "only believe half of what you see and none of what you hear.).
This has been such a learning experience for me and I am sure you as well.  Thank you all for reading and keeping the faith.  We are about 50 views away from 10,000 views!
With everyone's generosity I am sure Amy and I will miss a thank card to somebody.  So please know that we thank you all for everything you have done for us.  I received a very thoughtful card tonight from all of my "peeps" at Dental Health Associates.  Dr. Tim T and the gang are the best Dentists around!  Thank you everybody.  Josie, I look forward to reading your comment just as much as you say you look forward to reading my posts every day.
Goodnight everybody,
Ben

Caught doing something good

As you can see Benz is a sleepy boy.  The cool thing today is the nurses put his IV meds on a pole instead of on the table behind his bed.  So now we can get him out and about, well as much as we can in a 10x20ft NICU room.  This pic is him laying on the couch tonight.  I know all the wires look bad, but this is him for now.  One measures his heart rate, one measures his respirations per minute, and another his pulse oxygen levels.  His picc line is in his right arm.  I think we will have more fun now that we can get him out to play.  As long as we can keep his biliruban down, he can stay off of the blanket.  We keep seeing and hearing more positive signs from the Docs.  Like passing his hearing and vision tests.  His head size is normal and he seems like a strong little boy. He has been on the medicine now for two weeks.  He is doing OK on it except I think that is what makes him sleepy and it has made his white blood count fall.  If his white blood count falls too low they will stop the medicine until it rises to safer levels.  If after that it falls again they will cut his dose in half.  If it is still too low after the half dose we may have to stop the medicine all together.  So far his levels are just above the acceptable the range and we hope they stay the same or go up.
"You never know how strong you can be, until it is the only option"  I heard that quote somewhere and it is very true.  I don't feel I had the option to be strong or not.  I don't feel I had the option to make good or bad decisions.  Maybe a higher power made them for me?  Maybe it is how I was raised?   Maybe it is me becoming my own man?  My best guess is all the above.  I truly appreciate the kinds words that all of you have said about me.  It may be wrong of me to think this way because to some it comes natural.  But in all that I have been through, in the back of my mind I always ask myself "Am I being a good roll model to my children, nieces/nephews, friends, family, and/or even strangers?"  This is what my dad would call "being caught doing something good"  Basically, this is when you did the right thing instead of the wrong thing (especially when the wrong thing would be so much fun) and then your parents find out about the good choice you made (with out you telling them).  Like, after a football game in high school there was a party I chose not to go to.  Well the party was busted and kids got in trouble.  My dad found out about the good choice I had made (without me telling him) and bought me a new pair of shoes.  My sisters and I tried to make this a common theme in our house.  But being caught doing something good is hard to come by.  So, when ever my sister and I's friends would see us with new shoes they would always say "oh, you got caught doing something good again?  Good for you."
So to close this ramble session.  I may have blown my being caught doing something good by telling you all that I actually do think about being a good role model to all of these people, but it was worth it!
Again, I want to thank you all for everything,
Ben

Happy Mothers Day!

Benz is doing good.  He sleeps most of the day.  The doctors say he must have been more like 36 weeks along rather the 37 weeks 5 days we thought he was.  Which means he still has some catching up to do.  For example his ear was a little curled over, one testicles has not descended yet, and when he latches on to feed he forgets to breath a couple breaths and his blood oxygen levels fall.  Those thing should correct themselves soon.  The Neurologist came in Friday and said it was great news that he past his hearing test, he also said he see's other positive signs compared to other babies he has seen with CMV.   I spent the night with Amy and Benz in the hospital Friday night.  I hear that I was not that much help because I was so exhausted I never heard him wake up all night, which was a lot.  Sorry Amy!  So far a typical newborn (a night owl).  He still has to lay on the bili blanket all day and night.  I am not even going to guess how much longer because I thought he would be off of that already.
One of my best friends and college roommate Rodger Shingledecker is about to have a baby.  I hope that I have been a good role model for him.  Pray for him and his family for a happy and healthy birth in July.  I know they will do great!
I wanted to title this entry "you see what you want to see."  Amy and I took Beyla to the zoo Saturday morning for and hour or two.  We had a great time!  We only went in the front of the zoo.  We saw the seals, polar bears, took a train ride, and carousel ride.  I know it only seemed this way but, it seemed like 1 in 3 people either had CP, hearing aids, was in a wheel chair, or had some form of Neurological symptoms.  Obviously, we were thinking about what Benzen's life would be like.  I can remember going to the zoo after we found out about Remi having down syndrome, and it seemed like 1 in 3 people at that time at the zoo had down syndrome.  I know your mind plays tricks on you and you see what you are looking for.
I want to say happy mothers day to all the mothers especially to Amy and my momma.  I know that I have put my mom through way too much even before Benzen.  I can't even describe to you all the feeling of having to call or tell your mom face to face that your first born will have down syndrome, your first born will pass away today, your wife has had a miscarriage, your son has serious brain abnormalities, and will never be a typical boy.  This is hard for me to even type.  My mom is a women of little words but you always know she is listening and hurting with you.  I have always been a momma's boy and always will be.  I look forward to telling my mom all the great things about Beyla and Benz.  They are both going to make us all very proud and I truly think Benz will prove a lot of people wrong.  You all know how I feel about Amy.  She is the love of my life, my best friend, and the best mother I could ever ask to be married to.  We will get through this and have an even stronger relationship.
Sorry for the delayed post.
Ben

Pray for Neuroplasticity

This is a Picture of Beyla and Benzen face timing each other.  You can tell they love each already.  He is going to be Beyla's personal baby doll.  Benzen is still under the bili lights.  I can't believe it.  They want to make sure it does not go up again.  It is torture having to leave him in his crib that long.  We get to hold him quit a bit but not 24x7 like we want to.  He is slowing morphing from brand new born look into week old new born look.  His face is getting round and cheeks have the inherited chubby look.  In conversation with the nurse he had tonight she mentioned the term neuroplasticity, which is when the brain has abnormalities and other parts of the brain pick up the slack. That might be similar to me being color blind and my sense of smell being heightened, just a guess until I can research it more.  Who knows?  I have heard the brain is a very powerful machine and kids are resilient.  With those two sayings, I am staying positive. 
Exhaustion is starting to set in for me.  So I can't imagine how Amy is feeling.  She has slept at the hospital since May 1st.  I have started coming home at night but that doesn't mean I can sleep any better.  I can help but try and guess what the time will tell will be that everybody is telling me.  I sit up wondering how severely he will be impacted.  I know I will drive my self crazy but I can help it. We are starting to get some kind of routine going it seems.  I think Amy is getting to see Beyla more that she thought she was going to get to when we first heard we were heading to the NICU for 6 weeks. 
The love and support keeps flowing in!  We love it.  We really don't understand what we have done to deserve such great family and friends.  Don't forget to thank God for what he has given you, what he will do for you today, and what he will do for you in the future.  I know that's what my family prays for everyday.
Thank you Everyone!
Ben

Neuroplasticity

Contrary to common ideas as expressed in this diagram, brain functions are not confined to certain fixed locations.

Neuroplasticity refers to the susceptibility to physiological changes of the nervous system, due to changes in behavior, environment, neural processes, or parts of the body other than the nervous system.^[1] The brain changes throughout life.^[2]
Neuroplasticity occurs on a variety of levels, ranging from cellular changes due to learning, to large-scale changes involved in cortical remapping in response to injury. The role of neuroplasticity is widely recognized in healthy development, learning, memory, and recovery from brain damage. During most of the 20th century, the general consensus among neuroscientists was that brain structure is relatively immutable after a critical period during early childhood. This belief has been challenged by findings revealing that many aspects of the brain remain plastic even into adulthood.^{[3]
FROM WIKIPEDIA (http://en.wikipedia.org/wiki/Neuroplasticity)}

No news is good news...right?

   I did not even get to see Benzen today.  That is why you get to see a pic of Beyla above.  She comes to visit to her brother an mom.  She is not aloud back in the NICU so we have found places to take her outside the hospital and some fun places in the hospital.  Amy was with Benzen all day and she told me everything was good and quiet today.  He is still under the lights today because his biliruban is still kind of high.  They told Amy that his sodium was high today, so they wanted to make sure he was eating well, which he is.  They ended up adjusting his IV meds to something with little or no sodium in it.  I did not see him today because I worked all day then Amy came home to play with Beyla and I.  Amy was able to have dinner with Beyla and even tuck her in to bed tonight.  Patti and Bummer sat with Benzen while Amy was out.  Today is one week down of our 6 weeks in the NICU.
  I have a story from today.  On my way to work I stopped to get a coffee.  The line was about 5-6 people deep.  Everyone in front of me was complaining about the line, gas prices, the cashier, and more.  When it came to my turn, I put my coffee down and she said"oh, you just have a coffee?  You can have it for free for the wait."  I said "no thank you, I'd like to pay for it because the line was no ones fault."  We fought back and forth in a nice way about the amount to pay.  Eventually she charged me a dollar.  I paid it and then tipped her two dollars.  She got emotional and told me that people are always mean to her there and people do not appreciate what she does there.  She said I made her day and was appreciative that I treated so kindly.  This in turn made my day.  I called Amy to tell her about this and she said that the women was probably trying to "pay it forward" for something someone had done for her in the past.  So really I somehow "one upped" her pay it forward and I didn't mean to and if that is true I would feel bad. 
So for now, no news is good news.
Ben

Lifes a journey...Not a destination

 "Life's a journey not a destination" This is one of my sister Lori's favorite quotes from an Aerosmith song.  Think about it for a second.  Do good in this journey of life and you will make it to Heaven.  Take care of God's people, no matter what.  Sounds simple right?
Benzen passed the second half of his BAER hearing test and also his eye exam from an infant ophthalmologist.  That was all great news.  Shortly after that the neurologists let us know that he was reviewing the MRI again and judging by what he see's he is 70-80% sure Benzen will suffer from some sort of hearing loss (how will we know if that is just not inherited from his Papa Bummer?).  Most of you know that Amy is a speech therapist and knows all the great audiologists in the area.  Thanks for your help so far Julie.  They will monitor him closely and we will be prepared for what ever happens.  He also said some of the findings on the MRI were signs of Cerebral Palsy and possible future seizures.  We are still cautiously optimistic he will have mild cases of what ever he may develop.  We had a new nurse today, and she told me some interesting facts.  She said in other infants she has cared for with abnormal MRI's and neurological disorders that they show signs like continuously smacking their gums, continuously swinging an arm, or continuously kicking a leg.  Benzen does not do any of those.  Which seems like good news.  His biliruban did go back up, so they put him under the lights again all day today.  I would think he will be done with the lights for good tomorrow.  Although, he loves the lights and just chills out and relaxes as you can see from his above picture.
The other picture above are drawings from Zae Zae Bolyard, Harlie Hensley, Sadie Walters, and Mei-Lyn Walters.  Also, in there is the count down calendar made by my sister Ashley.  Benzen loves his new artwork.  I still cannot believe all the of the stuff Betsy is sending up to the hospital from all of you!  Thank you all very much!  In the Jewish faith this would be called a "Mitzvah" (A moral deed performed as a religious duty. As such, the term mitzvah has also come to express an act of human kindness.)  This will be repaid to you many times over in Heaven.
Thats pretty much it today.  Nothing sappy and sad.  I hope you all have a great day today since it is after midnight.
Ben

Stay awake for me.

Today my sister Ashley made us a count down calendar.  It's a very nicely decorated calender that counts down the days until Benzen can go home.  It is very awesome, but it put things into perspective.  5.5 weeks is a long time.  The nurses told us that when we feel Benzen is up to it we can bring a bouncer, swing, or a blanket to play with him on the floor.  I think he will love him some "belly time" on the blanket.  This is good news because we were worried he would only be able to just be held or lay in his crib.  Its hard because of his PICC line, O2 sensor, and vital monitors.  As you can see Beyla is in love with him.  I picked her up tonight, got her all buckled in her seat, and she looked over at Benzen's empty seat and said "Benzen sit here!"  Teary eyed I told her "soon enough."  We got home and Facetimed Amy and when Amy was showing Beyla and I Benzen she could not stop kissing my phone screen.
Benzen is doing well again today.  His bilirubin went up a little to 13 from 8, so they are going to monitor that again.  Our interim pastor from Faith Lutheran came to visit tonight.  She was very nice.  As you can see from these blog updates, I think I talked too much.  I don't know if she got to cover what she wanted to because I wouldn't shut up.  We told her more about Remi, R Angel, and some of our plans for Benzen.  I was trying to explain to her where my head was at, without her thinking I was a weirdo.  I was trying to explain that I was very tempted to stop believing, but I just couldn't.  Who would I talk to, be mad at, or be happy with especially when I am alone?  Who was going to protect me, my family, my friends?  Right now, I can feel people saying "but Ben, he let your little girl die so young, he made Amy have a miscarriage, he gave Benzen CMV which is going to prevent him from having a normal life.  Well Remington is one of the best things that ever happened to me and a lot of people, without the miscarriage we would not have Beyla, and Benzen is and will continue to be another one of the best things that ever will happen to me.  He already is an amazing little man!  She said a very nice prayer for him before she left. 
The song for this update is by Secondhand Serenade called Awake.  This was Amy and I's wedding song Sept 2, 2007.  This was the day we told each other that we would stay by each others side through sickness and health, for rich or poor, the good times and the bad.  This song to us is never wanting to be apart from one an other.  We vowed to each to do as much as we could together, never go to bed mad, and always be there for each other.  Now you can see why this experience is extra sensitive.  I am here at home taking care of our daughter and she is at the hospital taking care of our son.  It's hard to be apart.  Every line in this song holds true from me to Amy and I know they hold true from Amy to me.  If you see my Godson Hudson around ask him to sing this song for you. 
Thank you for the continued love and support.  I hear, read, and feel it all.  I am trying to respond as fast as I can to FB messages, txts, calls, and comments.  I love them all, they really help keep me going!
Good night,
Ben

Lyrics to Awake :

With every appearance by you, blinding my eyes,
I can hardly remember the last time I felt like I do.
You're an angel disguised.

And you're lying real still,
but your heart beat is fast just like mine.
And the movie's long over,
that's three that have passed, one more's fine.

Will you stay awake for me?
I don't wanna miss anything
I don't wanna miss anything
I will share the air I breathe,
I'll give you my heart on a string,
I just don't wanna miss anything.

I'm trying real hard not to shake. I'm biting my tongue,
but I'm feeling alive and with every breathe that I take,
I feel like I've won. You're my key to survival.

And if it's a hero you want,
I can save you. Just stay here.
Your whispers are priceless.
Your breathe, it is dear. So please stay near.

Will you stay awake for me?
I don't wanna miss anything
I don't wanna miss anything
I will share the air I breathe,
I'll give you my heart on a string,
I just don't wanna miss anything.

Say my name. I just want to hear you.
Say my name. So I know it's true.
You're changing me. You're changing me.
You showed me how to live.
So just say. So just say,

That you'll stay awake for me.
I don't wanna miss anything.
I don't wanna miss anything.
I will share the air I breathe,
I'll give you my heart on a string,
I just don't wanna miss anything