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