Safe & Sound

Wowwie!  It's been a long time.  I don't even know where to begin or if people will still even remember our little miracle Benzen Boy.  Benzen turned one May 1st.  He has been getting a lot of great news lately.  Most recently we thought he was going to have to start wearing glasses.  The eye doctor said we can hold off for at least another year.  His hearing is still in the normal range.  He is allergic to Milk but that doesn't stop him from slamming some delicious almond milk.  He is getting closer and closer to walking everyday.  He has taken a couple of steps on his own.  He works extremely hard every week at his therapy appointments.  Amy fills me in after every one, mostly that he crawls around and visits his friends at therapy.  He truly is the happiest most giggly little boy in the world.  The therapist has a tough time working with him because everytime she touches him he starts to belly laugh.  He is a tough little boy.  Sometimes I don't think he feels pain.  He's taken some major spills and just shrugs them off or laughs.  I am truly humbled by what God has blessed us with.
He and Beyla are best friends and get along great.  It is so fun just to sit back and watch them play together.  Or listen to Beyla yell from the other room "daddy he is using his right hand!, daddy he's trying to walk!, daddy he is using his fork the right way!"  Things a little girl should not be worried about but it's adorable.
Every milestone, large or small, I am taken back to what they tried to prepare us for what Benzen would be.  "He will NEVER be a typical boy."  "It will take a miracle for him to walk or speak correctly, oh and by the way research shows that most CMV babies lose their hearing before age 7."  I think they told us that just to challenge us.  Guess what...it worked.  We are certainly not out of the woods and some things are out of our control.  But Boy O Boy Benzen boy is a miracle!  He is a true inspiration.  He does not know his challenges, his limitations, or "handicaps".  And you know what?  Even if he did, I don't think he would care.  He has a certain determination in his eyes when he pulls himself from crawling to standing, when he feeds himself, or even trying to turn the pages of a book. 
So here we go.  Our most recent set back.  He has to have surgery tomorrow for his undescended testicle.  Another easy/common surgery that has Amy and I beyond worried.  We chose to have it done at St. V's not Toledo because it would have been too hard to have the surgery done where our daughter Remington had surgery and eventually passed away (and it would have been done by the same group of surgeons, mind you).  We have to do what's best for Benzen and we feel comfortable with the surgeon we have chosen.  You can't even imagine the flashbacks I am having.  Or the feeling of deja vu.  I know it has to be done but it's still very scary. 
The pictures above are both interesting to me because to me in both cases I feel like Benzen is in control.  When he was first born I could feel him saying "Ok dad, we've gotten this far...What's next?  What ever it is I can handle it, WE can handle it together."  Then tonight before we put him down for bed.  I wanted to recreate that left image 1 year later.  He grabbed me by the cheeks and I could feel it again.  "Dad, trust me.  Look at what we have overcome so far.  This is nothing more than that.  WE got this.  Have I let you down yet?" Then you walk into his dark room with him, start to sing twinkle twinkle, he drops his head on your shoulder, tucks his arms in, and starts snoring.
So, say an extra prayer for Benzen boy tonight.  Also, say a prayer for strength for Amy and I.  It's all in God's hands and we trust him.

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