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