Sunday, November 17, 2013

My Kids' have new big sisters

I just noticed that i never posted this from last year.  So here it is

Ok, officially they are not their big sisters.  We haven't adopted anyone.  But the way these two have taken to my kids and treat them, and us, as a family amazes me!  And to top it off they are PSU Students!

How we met, if you didn't know my son had a brain tumor, he had to got through surgery twice to have it removed and then the regrowth removed.  We had the privileged of having the surgery completed at Penn State Hershey Children's Hospital.  Along with that we qualified to be apart of the four diamonds fund, which help paid all our bills and it contributed to building the new Children's hospital at Hershey.  Well, who is the largest funder of the four diamonds fund?  THON!  For those of you who don't know, it is a PSU Student ran philanthropy that only supports the four diamonds fund!  Being apart of THON, an organization adopted us, and these two were apart of that organization.  Not only did they go threw the motions being apart of a THON organization, the went above and beyond of what I expected.  They reach out all the time, they have befriended my kids. 

Both of my kids get so excited when they know either of these two are coming to visit, or that we'll see them at any event.   

I didn't get their permissions to put their names here, but they know who they are and they should be proud of who they are becoming.  And if their parents see this, they should be proud parents of these two wonderful young adults!

Again these are College Students with the biggest hearts that are touching my family.

Sunday, May 26, 2013

My Wife Needs Neurosurgery (Brain Surgery) scheduled for Tuesday May 28th, 2013

Tiffany has been diagnosed with Chairi malformation, where her cerebellum tonsils in her brain are partially below her skull and are causing her spinal fluid not to flow correctly. Chairi Malformation surgery is considered brain surgery even though the doctors should not get "near" the brain compared to other brain surgery.  Although, the doctor's will do a craniotomy to expand the area under the skull by using cow parts and then reattach (sounds simple, but you know it is brain surgery, therefore, it is more complicated than that).

Anyways, this isn't something that just appeared, they say she was born this way.  Research doesn't know why some people with this malformation have issues and others doesn't.  They also don't know why it appears randomly throughout life.  But Tiff has had problems with balance all her life, and within the last 5 years she has really had difficulty with virtigo.  And recently she started having more frequent and longer lasting headaches.  Last week, she spent a week in the hospital due to it, where they decided to run lots of tests (thinking she maybe had lymes disease, but the official test came back negative).  Luckily for us, they requested a neurosurgeon to review her MRIs and he found the issue.

The risk isn't as high as Noah's neurosurgery was, but the recovery will be, and it maybe longer due to the location of the incision.  She'll have a week of recovery in the hospital, and an additional 4-6 weeks at home with recovery.  After that she'll be off a total of 3 months from work due to her responsibilities (childcare).


Wednesday, April 17, 2013

A Year ago today and a special one-year anniversary trip

I can't believe it has been a year already!  April 23rd will always stick in my mind as a day my world changed.  On that day a miracle happened when our eye doctor did a little extra checking and found swollen optical nerves.  He then proceeded after hours to follow up with a neurologist and called us at night to send us to the ER.  

We have so many people to be thankful for: all the nurses, child life volunteers, regular staff at Hershey, Dr. Iantosca and his supporting staff, all of our friends, and all of our family.  But we would have a different world right now if Dr. Talone didn't follow-up, didn't go above and beyond his job.

And now we have to be thankful for so many more people.  Today we are traveling to Pittsburgh Airport to fly to Orlando, FL.  That is right we are headed to Florida to visit Mickey and Minnie Mouse.  Thanks to Make-a-wish for such a great anniversary gift.

We've never shared photos of that horrific week.  So today, I thought I would share some.  Please enjoy them, the bring so many emotions back, but in the end the emotion is joy, because we get to spend today with Noah!  


Here is Noah and Sydney April 24th, 2012 in Penn State Hershey Hospital at the Lion Shrine.  Notice how excited Noah looks.  The rest of us weren't so cheerful.


Noah got to meet and become fans of the PSU Men's Basketball squad.
His favorite player became #23 Tim Frazier!

Friends and Family came to the hospital to keep Noah in a cheerful mode.
Here is his Cousin Lauren.

Got to Hug the Nittany Lion

Noah's favorite Angry Bird went into Surgery with him.

Immediately after surgery in the PICU (apx 6pm)

The next morning still in PICU, but swelling has increased.

Giving us a smile

While in the PICU his sister wasn't allowed to visit and all either of them wanted is to be with each other.
Here they are together with the cousin Talia!

This is the first time we got to see the incision area.


When we were released from the Hospital the both wanted to go through Hershey Chocolate world.

Ronald McDonald House was a savior for us.  They put us up for free while Noah was in Hospital.  This is one of the statues outside of the facility!

Due to the location of the tumor Noah had to have a spinal tap to verify it didn't spread.


To end the blog, I decided to show a happy picture.  We got to tour Beaver stadium!  It was an awesome experience and it was even sweeter because our little boy was with us enjoying it.  Here is Noah and Sydney sitting in the end zone on the field.