This Day Will Never Be The Same

I don't think today or tomorrow will ever get any easier on me.

3 years ago today, we were preparing for the greatest gift of our lives.  Something  Someone that was going to change us forever.  Both, individually and as a couple.  I wont lie...we had our moments of wanting to do it individually, but in the end, something someone always drew us back together.  In all of our tough moments, fights, trying times, me being a needy pregnant brat times, he not giving in to my bratty times, whatever you want to call them, we decided were doing this together.  We were going to put us first so that we can raise a healthy human.  BUT, on this day 3 years ago, we didn't know just HOW much this was going to change us.  

I will NEVER forget this night.  We had all of our parents, and of course, my sister, in town.  We had a special dinner planned at The Salt Lick, and just wanted to enjoy the family as ONE...getting ready for a new little ONE.  I was in heaven.  I got to eat WHATEVER I wanted. (if you know Gabe, this was a daily battle for all 39 weeks!).  We took our parents and sister out for some "congrats drinks/Dallas cowboys game watching," and just lived in the moment of our last day of being pregnant. We made 'bets" of boy or girl... would he/she look like me or you... who's "BIG" nose would he/she have.. my moms blue eyes or our brown eyes?... so many questions, so many thoughts..... SO MUCH LOVE....in one night... THE NIGHT BEFORE.... 

I will never forget the one person who offered to be there to "take the shots."  We had to be at the hospital at 6am to prep, and she showed up at 5am to get all the shots she could.  She is one of my "bestest"....she wanted to make sure EVERY moment was captured.  The hospital staff raved about her, because she wanted a picture of everything we and baby would touch.  We went over all of the perfect shots she would take, and made sure with the nurses that she wouldn't miss a heart beat.... 

I never fully shared the photo album with anyone, because at 7:39 am, time stood still.  She was left with nothing to capture for the next couple of hours...... time stood still... for everyone...

I don't think I will ever get through September 9 with out shedding a tear.  Every parent changes on the day their child is born.... but I really changed.  I saw my baby boy for the first time, I kissed him goodbye on what they told me might be the last, I saw a look in Gabe's eye's I had never seen before, I cried and prayed like I had never done before.... it was the first for a LOT of things and it changed me as a person, a person I never knew I could be.  I can remember them showing him to me and telling me to say goodbye and Gabe running out with him.  They had my mom come in to finish the surgery and we cried together (mostly because she was concerned about the blood), but it was the first time she would hear the words..."you have a grandson"... I was wheeled up to my room, still in shock, still numb, still balling my eyes out.... yelling, "WHERE IS MY SON",... i cried...over and over and over.... Gabe would come check in on me and say " he's ok...there are issues..but he is ok" and yet, that was all he could say....I wasn't allowed to see him for what seemed like forever, but was really 12 hours....I sat and cried for 12 hours straight.... 12 hours... 

You all know the rest.... the results, the test, the beginning of "Our PFIGHTING Story"... 

I sit here today... 3 years later... and I CAN NOT believe what we have been told, been through, survived, and LOVED through.  Here we are.... 3 years past what they said we would live through. The words " he wont survive past infancy" still ringing in my head.  

Ya'll ... he is starting school NEXT WEEK!!!   He is smarter that I cold ever imagine... He has an attitude like something straight from BOTH of his aunties... and he loves like no one ever could.  He is the BEST thing that could have ever happened to us.  He made Gabe and I a "real thing".... he made us parents...he made us A PFAMILY.  He has a sense of humor that no kid does (he sat in the dark and scared the crap out of me on purpose today), and he is everything Gabe and I hoped he would be.  Yea, we may need a little work on somethings, but he is perfect in every way.  He makes me the person I want to be.  He makes me want to PFIGHT everyday... He makes us, US....

So, if you read this tonight, or tomorrow - September 9, say a " thank you" prayer.... eat a piece of cake, or a donut, or drink a glass of wine/champagne... and JUST CELEBRATE!!! Celebrate God's love...and perfection... and Brody's life...

I sincerely thank each and everyone one of you who have followed us...prayed for us....asked about us... loved us... and just simply thought of us.... we would not be a PFAMILY without you!! 

HAPPY 3 YEAR PFIGHTING BIRTHDAY!

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We love you.... BRODY LOVES YOU... 

Life isnt a test.

When you take any sort of test, there is usually ONE correct answer.  There may be good answers listed, but there is only ONE definite, right answer.  Life is not a test.  There is not just ONE answer to Life.  Last week, we were given that lesson.

If you have kept up with our journey, you will remember that back in January, we traveled to Cincinnati to visit their airway specialist and we were told that since his mid face is pushed back and that is ultimately what is causing his air way obstruction, their crainofacial team wanted to do surgery when he was 2, so that we can work on getting his trach out. (You can read that update here: http://pfightingpfamily.blogspot.com/2015/03/it-raining-but-we-are-shining.html)

When we came back home and visited our craniofacial dr, Dr. H, and told him what Cincinnati's plan was, he quickly stepped in and said he would do the same surgery when B was 2 and there was no need to go back to Cincinnati....  but first he wanted us to meet with a new ENT, Dr. C, who studied at Cincinnati Children's.  He felt that she would be the best for us and as proactive as we wanted. So we did. After meeting with her, she wanted to take a look at B's airway herself and consult with Dr. H on her findings, so that they can come up with a plan and time line of surgeries.  So we scheduled and in May B had his procedure so she could see what the deal was.  While he was in recovery, she sat down with us and quickly went over her findings.  We were shocked to hear that it was more complex then we had ever been told.  She said that the office would call us and set up a conference with his team of doctors to discuss their plan and what they think would be best for B.

That conference was last Wednesday.

Gabe and I went in expecting to hear what WE wanted to hear, not what THEY wanted us to hear. We were told that his case was a little more complex then we or they had thought and that he would need a little more surgery. But because his air way is protected with a tracheotomy,  Dr. H felt that it would be in B's best interest to wait until he is 6 years old (as originally planned) to even start doing the surgeries.  He thinks that the long term result will be better if we wait until his bones are thicker and more settled.  They said that because B is growing, happy, and healthy for his syndrome, why take surgical measures. Just let him grow and let him be.

Cincinnati wants the trach out.  They want to do his surgery when he is 2.  They feel that the morbidity rate (YES, death rate) with kids with trachs is high, and why take the risk of having one if we can take surgical measures and work on getting it out.  The sooner the better, right?

In short, they left us with the words "you have to make a decision on who you want to go with, what you feel is best for Brody"

So here is when you realize that life is NOT a test.  What decision is right? Why do WE have to make this decision?  Shouldn't there be ONE right answer? ONE way to do this?  Who do we go with?Who's opinion do we trust? WHY... it seems that since he was born, I've been asking WHY!

I've been in a funk for a week now.  This is weighing heavy on my mind.  Do we live for 6+ more years with a trach or do we take measures to get it out.   Being a trach pfamily is hard.  Its work. Its scary.

How do we make the right decision?

I know we have to pray about it, and that God will send us a decision.  But this isn't a test.  We could get it wrong.  I couldn't deal with the fact if we did get it wrong.  

Im lost and at a stand still.

www.gofund.me/pfightingpfamily

-S

If you can take it, you can make it.

B has a procedure tomorrow. Another one. A short one, but another one under anesthesia.  I hate this. I think the night before a procedure is the worst.  You know its coming and all you can do is think about it.  "Will he be able to handle the anesthesia AGAIN? Will they give us good news? What if they find something that will put a damper on all our plans for him." The day before a procedure is .....well....it is what it is.... I dont even have the words to explain it.  Your whole day is consumed by the thought of that single moment at the big white doors, when you have to hand over your son to a stranger.  A nurse, and Im sure a really loving one, but still a stranger.  I can tell you every detail of that moment.  Ive  We've been there too many times. We have walked down that hallway too many times.  First, it started with him in an incubator, then I carried him, tomorrow Im sure he will be walking him self and not knowing where he is going. Then, we will come up to the big red STOP sign.  Like one you see on a street.  There will be 2 big white metal doors behind it.  The nurse will say " ok, time for hugs and kisses... don't worry MOM, we will take good care of him"  She says "mom" because I am the one who turns into a baby.  I hold him, I cry, I kiss him a thousand times.  And I say "i'll see you in a bit....be good....be brave.....i'll see you when you wake up" I've said that 8 times and counting.  8 times to many.

That is what the day before a procedure is like.  You play that moment over and over and over in your head.  You have a different train of thought.  Nothing in the world matters or makes sense. You mentally try to prepare for another long day at the hospital. Get some rest, they tell you.  But you cant. Too many thoughts going through your head.  And that one moment just plays and plays, and it wont stop until you relive it the next day.

The day before a procedure flat out SUCKS!

Tonight after we put B to bed, we sat and watched the movie "Unbroken".  Its about a WWII POW.  A true story.  An amazing story.  There is a line that he repeats to himself when the times get tough. "IF YOU CAN TAKE IT, YOU CAN MAKE IT"    I feel like B is a POW in his own life war.  We are pfighting to get out of this and over come it.  And this statement holds true to him US.  If we can take it, we can make it.  One day, after the times have been tough, after we have been beaten down with obstacles, we will make it.  We HAVE made it.   We have made it this far.  We have beaten the "live past infancy" obstacle, amongst many others. We are going strong.  HE is going strong.  He will make it. And with that little 9 word statement, our pfight continues.

I pray tonight that the doctors get good rest.  That B handles the anesthesia, yet again.  I pray that they give us ANOTHER good and positive report.  That these findings set us up for success for the big surgery in September. I pray for mental stability for Gabe and I.  I pray for our pfamily.  I pray for a fast and easy recovery for B. I pray for his pfight.  I pray for him.

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good night,
-S

its raining but we are SHINING!

WOAH... where has the time gone.... its been like almost 3 months since I have written!  I wanna say nothing has been going on, but life has been so busy, busy with a  VERY active 17 (almost 18) month old.  Lets catch up! Ready, set, go....

January.  Wow, what a beginning to the year.  We started off a little rocky, with B and I both being sick.  He got over it in one day, but I on the other hand took 1 week to get through it. Then we had a MAJOR incident with a new nurse.  It was scary, landed us in the hospital and ended with a nasty trachea infection.  My poor little B, he was miserable, and I'm sad that we had to go through that.  But after a strong round of antibiotics and lots of TLC, he was back to his old happy self.  Then the biggest part of our new beginnings was our big trip to The Cincinnati Children's Hospital for evaluation. It was a GREAT trip with lots of information.  Here is the break down.  We had a total of 7 appointments in 3 days. We saw their entire airway team, and on Wednesday, the biggest of the appointments happened.  His broncoscopy.  They put him under anesthesia and off he went into a cold little operating room.  They stuck a camera up his nose, and one down his trachea.  After 2 hours of waiting, we finally met with the doctors and got the news.  His trachea is FINE...its growing like a normal trachea should grow.  It is a rare looking trachea, since its all cartilage, but its something that they do see and they do follow.  HOWEVER, since his mid face is pushed back due to his syndrome, here is where the issue is.  While they were able to get a camera in his nose, it was a very small one, and it stopped once it got past the nose.  Meaning, his face is closing off his upper air way.  While we knew this from our team of doctors here in Austin, the Cincinnati team has a different way of approaching it.  The ultimate goal is to get his trach out.  To do this, he will need to have his mid face reconstructed. Our doctors here in Austin, want to do it when he is 6.  Cincinnati wants to do it when he is 2..yes 2..TWO... in 6 months. WHOAH... wait .... what? Here's the deal, its an ugly ugly UGLY surgery.  They will go in through his bottom eye lids with a "chisel" and break his face in half... I'M.NOT.EVEN.LYING. Then they will move his mid face as far forward as they can, put a retraction (halo) device on his face and head, and let his bones heal for 4 weeks.  During that 4 weeks, Gabe and I will turn the device 3 times a day so that it pushes his face back in to place slowly.  Kinda like the skull distraction device he had back in April, except instead of pushing out, it will pull his face back in.  They told us to think of it like silly puddy....they stretch it as faaaarrrrrr forward as possible, and then slowly move it back into the right place.  It will move his jaw out, open his airway, and HOPEFULLY if all sets well and goes well, we can work on getting his trach out...BY THE AGE OF 3!!!  This is when I started crying.... this could be the start of a NEW and DIFFERENT LIFE.  To hear that he can possibly be trach free by the age of 3 was just amazing. While I hate to put the little guy through this, I just know it needs to be done.  After leaving the hospital, we cried.  We celebrated.  We grew more as a family.  

This surgery is a HUGE decision.  Not only mentally, but physically and financially.  Its a HUGE commitment.  Lots of decisions to be made.  Will we stay there in Cincinnati for a month? Fly back after a week long hospital stay, then fly back for the device removal? Is 2 a good age? Will insurance help us with this? So many questions.  We will sit with our team here in Austin and discuss.  They don't do this surgery here. I cant even BEGIN to imagine seeing his face look any other way.  This is by far MORE than just a cosmetic thing.  Its a life changing surgery!  But if we could get his trach out by 3 years of age....that is HUGE!!! We could get him ready for a "normal" life.  School, sports, talking, eating....so many things could be different.  I pray daily for peace of mind with this decision.  We have AT LEAST 4 more trips to Cincinnati in the next year!  Pray for us all!!

February.  Whew... what a fast month!  B has become SUCH a different child.  He is OFFICIALLY walking/running all over the place.  He loves to play hide and seek in the pantry.  He climbs the stairs. He learned to blow and give kisses. and get this... he has a little "squeak" that sounds like MOMMA!!! yes... his squeaks are starting to sound like words!!  We went in for our 6 month check up here at the trach clinic and his speech therapist there gave him his passimere valve. Its a cover that you put on his trach that helps him make actual vocal sounds.  Its hard to learn to use, but he is slowly getting the hag of it.  He has been super healthy this month (THANK GOD) and is truly thriving! 

As I finish writing this, one of my favorite songs just came on... "you are the best thing" by Ray LaMontagne.  He truly is the BEST thing that has happened...well him and Gabe.  They have both changed my life and have made me a better person. I cant thank God enough for all the amazing life changes and blessings.  I cant wait to see what the future hold for us. I see bright skies ahead.  I mean it.  Our rough sea is starting to calm.  I cant thank each one of you for all the love, support and prayers.  

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

A happy and calm momma,

-S

The sound of Silence but the Actions of LOVE.

We all know that one person, maybe more, who just seem to talk and talk and talk.  They are the person that can make friends with a tree.  Most often than not, some one will get annoyed with just how much they can talk.  But to that "Chatty Cathy", talking is just their way of life.  Its just what they do.  Some even make a living out of it.  Some spend their drive to work talking to them selves, or making phone calls just to talk to someone.  Its just who they are and what they do.  They talk.

Every day when I get off of work, the first thing I do is call Gabe to see how his day is.  Its a routine.  12pm phone call.  Some days, our chats are longer than others, and some are just real quick and to the point.  I love to hear his voice, and its just a calming sort of peace for me.  We usually share a laugh or 2 and always hang up with an "i love you, gina" (gina is my nickname.. long story).  Today was one of those "hey someone is in my office, ill call you back in a sec"  "ok, bye", and I continued my drive home.  As I stopped at a red light, I grabbed a set of papers that I have to fill out for Brody's dr apt tomorrow.  Another Dr. apt.  These things are never ending.  Its his 16th month developmental apt.  Every 6 months we have to go so they can track his development.  And I cringe at the thought. I cringe, because if we were not medically dependant, this wouldst be an issue. I cringe because we are "followed by doctors".  Every time I have to fill out these papers, I.CRINGE

Today's cringe of the paper work was just a bit harder than usual.  It was like someone just came out of the paper and punched me in the face.  The very first section was "COMMUNICATION".  Does your child say four or more words IN ADDITION to "momma and dada"? My first and only thought at that moment was "WELL NO YOU JERKS, MY CHILD DOESN'T SPEAK!"  And then the tears poured down like rain.  It hit me.  I just want to hear my child say "i love you, momma"  I want to hear him call out for me and gabe.  I long for that sweet voice that I know is inside of him to just say "hi, bye, momma, daddy, i love you" any thing.  I just want his sound.

His sweet little sound.

When will I hear his voice.  I have waited for that moment since I found out I was pregnant.  I was soon going to be a momma with a little nugget running around screaming.  Telling me he/she loves me.  Telling me random things that would make me laugh, cry, cringe.  I was always gonna have that little voice that I would call "mine".

I sat at the light and cried.  Thinking of the fact that I may never get to hear the voice or the 3 sweet words every parent loves to hear "I.LOVE.YOU"

At that moment, as I threw down the papers, my phone rang.  It was Gabe calling me back to finish our convo.  In a short 5 min, I went from my "peppy" self, to a "somber pissed off with a heavy heart" kinda person.  The tears were rolling down and I just had to let Gabe know how my heart was hurting.  I ranted for a while, talking in between my sobs.  "Why us?"  Why can I not hear him say "i love you".... Why do they have to send us THESE papers.  They know my child doesn't speak.  Cant they send us some with out this section? Every time I read the questions, it was like I was getting hit!

It was then that Gabe said the most truest words I have ever heard.  "He may not say it with words, but he ALWAYS shows us in his own way that he love us"  It may be with his excited little squeaks, his random open mouth kisses, or even the pull on my nose.... but he will always have his own little ways.

And just as quickly as the rain stopped, my tears were gone.  He was right.  Bear will always know just the right way and time to not tell me but SHOW me that he loves me... because like the old saying goes "Actions speak louder than words"

So with this CHRISTMAS season upon us, I ask one thing of all of you... go SHOW some one you love them.  Sit and listen to some one speak.  Enjoy the sweet sound of your child's voice.  And above all else, NEVER be afraid to use your voice in a way that you want to.  Sing, laugh, cry, shout, do what you can with your voice, and never take for granted what you have, because some of us don't get that.

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

With a loving and hopeful voice,
S

P.S.  There is a device that we can HOPEFULLY one day put on his trach to help him make sound, but at this moment he is not ready for it.  We have tried and he failed the test run.  Hopefully soon or when we go to Cincinnati, we can try again.  But for now, its just not for us.

All is calm, all is bright!

The holidays have ALWAYS been such a big and important part of my life.  Its always filled with good fun, lots of family time, and too many friend gatherings to handle.  This year is no different. Well, it sort of is, because we have a 15 month old.  Last year, our holiday season was a bit gloomy, because we were still reeling from bringing home baby, and getting ready for his first brain surgery (5 days before Christmas).  It was like we could never just catch a break. If things even calmed down for a bit, something was thrown our way.  But we over came every obstacle and had EVEN more to be thankful for.  A year has come and gone, and all I can say is that - ALL IS CALM, ALL IS BRIGHT.  

Bear has really been movin' and a'shakin lately.  The little miracle boy that has brought so MUCH joy to all of us, is just AMAZING Gabe and I every day.  He keeps us on our toes and is a TRUE boy. (he toots and laughs about it...how much more "boy" can you get) We have been working on a lot of milestones with his all 3 of his therapist and they are so amazed at his progress.  He is a little behind on some stuff, but continues to improve every day. We are getting ready for that moment when he just takes off and starts walking, but for now, walking along all the furniture and windows will work for us.  He LOVES to get into anything and every thing that he isn't supposed to have.  If you have it, he wants it, and when he doesn't get it, you get his little temper tantrum.  Typical baby, I suppose.  He make us laugh with all his squeeks and squeals, and when you don't pay attention to him, he YELLS at you (just ask gramma Mary).  He is learning a little bit of sign language here and there, but our favorite is when he ask for "more".  More of anything, but especially food!

His eating by mouth was always a little delayed, and I think it was because he had been throwing up formula/breast milk EVERY day.  That nasty taste it left in his mouth just set him off from food.  Im happy to say that he hasn't thrown up since SEPTEMBER and has really made a turn on eating.  He woke up one day and just decided that food was an awesome thing.  He loves eggs with ketchup, chocolate cake (thanks Gramma Mary and Auntie A), cookies, and well basically anything but "mushy baby food".  Gabe is still convinced that he is getting more on the floor than in his stomach, but hey, baby steps..... we are still learning! Its amazing to see him stuff his face, and if I wasn't too busy stuffing my face on Thanksgiving, I would've taken pictures of him stuffing his face.  It was SUCH a blessing and we are so THANKFUL that he is taking huge strides on eating.  Hopefully one day soon (*crosses fingers*) we can get him off the feeding tube.  

As most of you know, we have been taking trips back and forth to San Antonio to get his helmet adjusted.  After his last skull surgery in August, his dr wanted to get him in a helmet (doc band) to get just the right amount of shaping.  He hated it at first and it was something to get used to, but now its just another thing in our life.  All I can say about it is WOW.... the change is AMAZING.  Not only have both of his skull reconstructions been SUCCESSFUL, but this helmet has really been the topping on the cake (chocolate, if you must ask )  It is so amazing to see how far medical technology goes.  I never would have thought that my child would have to be a part of "medical numbers" or "medical scans and followings" but we are, and to see the change each month is just truly a blessing.

He has to wear is for 23 hours a day, for 6 months.  We are going on month 2, so just a bit longer to go.  I have yet to paint it, and EVERYONE is telling me that I need to, but I just cant pick a design that will match ALL of his outfits... I know... such a decision to make 

 

 A couple of weeks before his 1st skull surgery

His first skull surgery included distraction hard wear (screws) that we had to turn 3 times a day that pushed the back of his skull out and gave room for his brain to grow. 

His third surgery was to fix the top "bump" and move his forehead forward

 He's just as happy as can be, even with his helmet

He sure does enjoy that HOUR a day he doesn't have to wear it though

Just playin' while waiting to get his helmet adjusted

ALL is CALM , ALL is BRIGHT

Next month is going to be HUGE for us.  We finally got the go ahead to go see the trachea specialist in Cincinnati and the appointments have been scheduled!  We are in the process of booking flights and hotel.  We got our itinerary in the mail a couple of weeks ago, and it looks like its 4 days of procedures, test,scopes and anesthesia.  It will be a long scary week, but I am looking forward to hopefully finding an answer.  I am faithful that they will be able to do something for him. And any thoughts of getting bad news is being thrown out the window.  I cant wait to take him on his first airplane ride, and all thought its not for a "fun" trip, Im sure the traveling experience is going to be one to remember!  

I hope that ALL is calm for you and your family, and I hope that ya'll are shining BRIGHT this holiday season.  I pray for a happy and healthy up coming year for each and every one of you and your family.  

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

Much love and lots of warm hugs,

-S

"A house is where you live, but a home is where your heart is"

When Gabe and I found out we were expecting our lil nugget, we decided that living in a 695sf apt was not going to work....so we quickly found the most perfect little subdivision to build a little home.  When we started building, the guy said that the house would be ready in late August - Early September.  I fired back with a little "worried mom" look and said, LOOK... we NEED to be in the house by SEPTEMBER....i am due Sept 16.  He said he would do everything in his power to do what he could.  But just by our luck, it seemed to rain that whole summer and progress just wasnt looking like a Sept due date on the house.  We even had some thieves come and steal all the copper wiring which put building behind about another 3 weeks.  UGGGHHHH seriously??? At this point, I was a worried mess.  By August, I had to accept the fact that we were not going to be in our home and settled by the time the little nugget arrived.  C-Section was scheduled for Sept 9 at 7am.

After my second baby shower in August, I cleared out most of the open area of the 695sq apt and set up shop for baby.  I cleared out the coat closet and put all his clothes and diapers and stuff in there....we were ready... as ready as we could be.  It was the coziest little apt ever, and only one thing person, was missing.

The weekend of our scheduled delivery, our familes all came up for the "last super".  We had a fun filled Sunday of football watching, a nice dinner at Stubbs BBQ, and we even took our parents and the "dad to be" out for some drinks.  It was so fun to prepare to welcome our nuggt home.  A weekend I will never forget.

Monday, Septemeber 9 came and I was up bright and early (430am) getting dressed, doing my hair, and just excited as ever.....we were bringing home baby!!! ........

Fast forward.... you all know the story.... if not you can catch up here:  http://pfightingpfamily.blogspot.com/2013/11/the-end-of-week-but-beginning-of-future.html

We left the hospital on Thursday, after saying good bye to our sweet boy, only to meet him at his temporary home - DELL CHILDRENS HOSPITAL  NICU a couple of hours later.... I couldnt belive it... we came home to our small apartment empty handed. Everything that was soooo meticulously cleaned and prepared sat empty and waiting.... It was the worst day a new mom and dad could have.  We sat and cried and wondered where we went wrong.

2 months and 3 days went by... day in and day out, our new home was the NICU... our heart was there... Every day was a routine.  Wake up, clean up the apt, get dressed and go sit in his room at the NICU.  Some days were better than others.  Surgeries here and there...and oh yea, we were still in the process of building a home.

God knew what he was doing.  He set us up for this.  He was gonna pull us through.

On Nov 4, we got the green light to start preparing for a discharge....everything had to get put in to place before we could leave.  Nursing had to be scheduled for when he came home, medical supplies had to be delived and equipment had to be set up.  It was a race against the clock to get everything in order.

On Friday, November 8, we finally closed on the house and got the keys.  It still wasnt 100% ready, but we needed a house.  Saturday, Sunday and Monday we moved everything in.  Set up, cleaned and unpacked.  We were "ready" .  Things were in place.

On Tuesday, Novemeber 12, 2014 our house was finally made a home.  We got to bring the most precious addition home.  Finally.  We did it.  We were a family. Our house was a home.

Its been 365 days.  52 weeks.  1 whole year of having our sweet boy home with us.  He makes us laugh, makes us cry, makes us thankful for what we have.  His sweet tenacious soul is everything you could ever want.  He is the light that brightens our day. Every morning we walk down the stairs and he is sitting there waiting with his nurse, to shine his smile.  It the best thing to start our day.

It hasnt been the easiest year.  We have had to do things that no parent should have to do.  We both became nurses when we became parents.  Our families had to learn the ins and outs of "trach" care.  But we all came together and have done a great job.

We have a home, not just a house.  Our heart is there.  He made it complete.

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

Its been such a special year.  A year of learning, and loving, and just BEING.... I cant thank you all enough for all the continued love and support. The prayers, and the gifts and just the hand to hold while on this journey.  Thank you all so much.  Cheers to a year and cheers to MANY more.

Sleepin in his cozy little bssinet for the first time...

Meeting his puppy brother for the first time.  (that machine is his feeding machine)

Saying good bye to our WONDERFUL primary nurses ... (they wouldnt let us bring them home with us :( )

All bundled up for the cold night and his first ride home

Trying to get all the supplies organized.