The end of the week but beginning of a future

Happy Friday everyone.  Welcome to our PFamily blog - "A Pfighting Pfamily".  You are probably wondering why I am putting an "P" in front of my "F" words, and I shall get to that in a moment.  But first and foremost lets get something straight...this blog is a place for updates, prayers, support, and unconditional love.  I will share our pfamily adventure in our pfight for our son Brody - currently 2 months old.   So follow us and share our ups and downs, happiness and sorrow, milestones and triumphs, but most importantly PRAY and BELIEVE with us.

 Here's is the story of how and why our PFIGHT started......

Ok...wait...

Fast forward to now Tuesday 11-12-13....I had the whole story of my pregnancy and delivery written out, but as I sat in Brodys disaster of a room at 530am pumping, I decided that this first blog needed to be finished TODAY. So I erased all of it.... and I'll tell you why.

You see 2 months and 3 days ago, our son Brody was born with a very, very,very rare syndrome called Pfeiffer syndrome.  He has the second stage of it called Type 2.  He also has one more difficult aspect of it called a "trachea sleeve", which is SO rare, there are only 12, I repeat 12, documented cases in the world.  To this day...my son is number 13 in the world.  Pfeiffer syndrome is already a difficult syndrome, but throw the trachea sleeve in the mix and you now have a life limiting - as in most haven't made it past infancy syndrome.  The road so far has been filled with 2 surgeries, many test,mri's,ct scans and God only knows what else.  BUT the one thing that hasn't happened is us losing our Faith.   We know that we were given this opportunity to learn, grow, and love by God and we are trying and will try everything in our power to do it, and give Brody the best life possible.  Whether its 3 months, 4 years, or 35 years, this challenge is ours as a family and we will PFIGHT it. With all our heart and soul, we as a PFAMILY will make it.

Brody has been a resident in the NICU at Dell Childrens Hospital since day 4 of life, (something I will save for another blog) and since he can't breath through his nose, he has a trach that he breaths through. ..also known as an artificial nose.    He also had a feeding tube - called a gtube placed in his stomach so he can eat.  How long he will have to have these devices, no one knows, but its the only way of life he knows, so thats what we know...2 other aspects of Pfeiffer that Brody has, is a clover leaf" shaped skull and a receded or pushed back mid face, which will also be saved for and explained in another blog.  That's our Brody...our world, our life, and our pfight.  The beginning of a whole new chapter in our lives.

So.... the reason I deleted the first draft of my blog is because in the past 2 months, if there is any thing that I have learned, its this.... Don't look back on the past, you can't do a single thing to change it, don't look ahead at the future because you will never know or control how much time you have, BUT LIVE AND ENJOY EVERY SINGLE SECOND OF YOUR PRESENT.....MAKE MEMORIES....SMILE....AND LOVE FIERCELY.....and that my friends is exactly what we plan on doing.  You didn't need to know about my pregnancy or my delivery....this blog is about our present....and the journey we are on as a pfamily....

So, as I sit here in Brodys disaster of a room, trying to set it up for his anticipated arrival,  I say to you, Thank you for following along with us and watching us grow, love, and Pfight for Brody..... it's bound to be an adventure. And please keep us in your prayers.  That is all we can ask from you.



http://www.gofundme.com/58c7p4


Love,
Steph

P.S.  please excuse any and all spelling and grammatical errors...since we just moved our internet and computer are not set up yet, so I am writing this on my phone.   And I promise as soon as I get set up, you will get a blog full of pictures.