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