Monday, April 29, 2013


Public Viewing / Cupcake Social / Book Drive for donations in honor of Eli...
The only thing Eli ever ate was frosting that we snuck him at special times.  He loved it!!  As all who know Eli know books are his favorite thing and he owns atleast 5 books for every 1 toy!  We have decided in leu of flowers to do a book drive.  All of the books collected will be donated in Eli's name to the local hospital (KU) that took such amazing care of our family and our little man!

Friday May 3rd from 6pm to 8pm
D.W. Newcomer's Sons
Overland Park Chapel
11200 Metcalf Ave
Overland Park, Ks 66210


Saturday May 4th at 10am
Shawnee Mission Unitarian Universalist Church
9400 Pflumm Rd
Lenexa, Ks 66215

Immediately following the service will be a procession to the burial service immediately followed by a balloon release graveside.

We are being asked often what we need.  We can no longer keep up with all of the texts, emails, facebook msg, and posts.  We are trying so hard but there are so many.  They are definitely appreciated and please know that we are reading them as often as we can and that they are literally keeping us together at this point. It warms my heart to see the outpouring of love for our little man and to see how many lives he has touched. We feel so damn lucky to be able to have had the honor of caring for Eli these last 3 1/2 yrs.  

So in answer to what we need.  Meals and Money to cover the upcoming funeral and burial expenses.
If you are local you are more than welcome to drop them off.  If you are far away gift cards (walmart, sams, hyvee) can be sent or paypal is also an available option.
Our door is always open right now.  Company is always appreciated.  
We would like as many people as want to attend Eli's funeral.  We feel very honored that so many are asking for details so they can travel from near and far to be here to celebrate our warrior.

Again we are asking for book donations.  This is what Eli loves the most and we feel the best way to carry on his legacy.

Our address is:
9407 W 103rd St
Overland Park, Ks 66212
paypal address :

Please continue to pray, mediate, happy thoughts, virtual hugs, real hugs, and anything and everything are very much appreciated right now.  We are in more pain that I can find the words to express.  

Many are asking for the story of what happened.  We will share that as we have always shared the rest of our journey.  We have vowed to always be open and honest and we will.  BUT currently being that open and honest is simply to painful and the words aren't there.  Please know that we will but right now we need time to grieve.  I feel as though I'm being swallowed up and that I will shrivel up and die alongside my baby.

Thank you and love to all!

Sunday, April 28, 2013

Unbearable Pain

I can't say much.  The pain is to much and blocks out all of the words.

Eli passed away this morning at 4:08am.  Our Warrior passed away in our, bob, emily, jace, ben, ari, lauren (his primary nurse), cheryl (a good family friend and eli's sign language tutor), Dr Lewis (eli's primary doc who is a good friend of ours, not just a doctor) with Lane (hospital chaplain and friend) by our side.

We will update more and the full extent of what happened but I simply can't do it right now.

Tuesday, April 23, 2013

It's been awhile!

Life.  It just keeps going and going.
So much has happened yet nothing completely pops to the front of my mind to tell you about the bulk of this last month.
It's been busy.  As always.  Something is always happening.
The kids are so busy with all of the end of the year school things.
Emily has had alot of concerts.  She was again first chair violin at the most recent concert.  We also had her middle school open house this last week.  I can't believe she is already getting that old.  She's excited but nervous about starting middle school.  She has 2 more concerts before this year ends.
Jace is doing ok.  Still struggling in school and definitely still struggling at home with his over sensitivity and aggression.  He is loving the warmer weather and is like always outside as much as possible.  He loves climbing trees and plays basketball alot on the new goal.
Benjamin is same as always.  Getting in trouble at school for not focusing and doing his work.  He's stimming alot at school and in class and has had some aggressive behavior.  His excuse is retaliation.  Definitely been having to work on him understanding that these things aren't ok.  He loves being outside as well.
Ariana is good.  She's still getting in trouble for talking constantly but does well other than that.  She is reading so well and is even trying to write her own sentences, and sounding out and spelling the words herself.  She loves to draw, especially princesses.

Bob and I?  Busy.  He's hardly home.  I'm here all the time.  I'm babysitting 2 little kiddos.  One I have 3 days a week, the other 4 days a week.  They keep me busy!  Eli loves having 2 little friends here to interact and play with!
This past Sunday (21st) was my birthday.  I spent the weekend in Wichita with one of my best friends.  We went out Friday and Saturday night and I had so much fun feeling young and free!  Of course waking up in the morning clearly reminded me that I'm not as young as I felt that nights before!  :)  I also got to visit with some friends and snuggle a brand new baby!  It was a much needed break!

My littlest Eli.  He's stable but struggling.  I know that doesn't quite sound right to most, but that's the best I know to describe it.  We have had alot of trouble still with med absorption.  He's also been falling and running into things alot, and is currently covered in bruises.  He's had some major allergy issues and is now on 4 separate meds for them.  He is having surgery on Thursday.  He's having a bronchoscopy, his tonsils and adenoids removed, nasal dilation  and tubes placed in his ears.  He also has a sty on his eye that has becoming infected so they may be removing it as well.  This is the first surgery that I don't have a good feeling about.  Something about it simply doesn't feel right.  I can't pin what it is.  His primary doc and I have talked at great length about it.  We have discussed the doctors concerns, which is airway management and breathing issues.  Also we have discussed bleeding risks.  Apparently these surgeries tend to have alot of bleeding, which in itself isn't great BUT for a kid on blood thinners with a blood clotting disorder this is HUGE.  We will be stopping his blood thinners tomorrow and he will not be able to resume them until surgical bleeding is completely managed.  This puts Eli at a big risk of developing blood clots in his heart and around his central line.  Eli had 3 of these in his heart right over 2 years ago and we didn't know if we were going to lose him then.  Lastly his docs are a bit worried about pain management as these meds usually suppress his respiratory status which is dangerous after anesthesia, especially when we will be messing with his airway!
I'm sure you are now wondering why I'm NOT SURE what is making me so uncomfortable.  You are probably thinking DUH the above list seems huge.  It is huge, don't get me wrong.  BUT with a kid like Eli we are always faced with a huge risk of things that could go wrong.  As scary as the risks are they aren't technically any different than many of our normal risks.  This IS the first time that we've done so much surgery by airway and our first major on blood thinners.  But I just don't know.

I'm scared.  I have an uncomfy feeling deep down inside and that scares me even more.
Eli's primary doc will be around the end of the week and weekend and has reassured me hundreds of times now that I can call him and the surgeon and team can call him at ANY point and he will be there.  I know this is true and he's always done as he promises.  But I'm still scared.

Eli will be admitted Wednesday evening and surgery is Thursday morning.  I don't have specific times as the schedule is never finalized until the day before.  Bob will be able to be up at the hospital the day of surgery.  The kids will all go to school.
The rest of the world goes on as normal.  Bob and I will spend the day sitting on the edge of our chairs jumping at every doctor and nurse entering the room, breathing only when our body has no choice, blinking as few times as possible, our heart stopping every time we hear the crackle of the page or a code called.  Our kids will sit in school fidgety and anxious and wondering.  They will go to the office asking for updates, begging the secretary to call us and ask if Eli's ok.  They will rush off the bus and burst thru the front doors asking what happened.  They will cry when they say goodbye to Eli before he heads to the hospital.  Bob will go home Thursday evening to be with the kids and I will stay at the hospital, sitting vigil next to Eli's bed, watching his every breath and vital signs, keeping close eye on pain level and pushing nurses and docs when I need.  It will be pure painful raw torture for our family.  It's so strange to think for us that everyone else goes on.  That the world doesn't actually stop, that time doesn't stand still.  Everyone goes about their day just as they would any other day.
I hate surgery days.  They are almost more than a mother of a special needs child can bear.

We will update as always.  They may be short and brief, facebook obviously getting more detailed frequent updates simply because it's easier from my phone.  Thoughts or prayers if you do are always appreciated and most definitely needed on Thursday!  Also feel free to comment here on my blog.  Comments do come thru me first simply to make sure they aren't spam but will always be published and are definitely read and very much appreciated!!!