Thursday, October 18, 2012

Eli Update and a Request

This is a face of Congenital Heart Defects.

Eli has been getting some nighttime tube feedings again.  For a while he was waking up hungry in the night.  At first it was no big deal because that's just a normal kid thing...a sign of growing...a phase if you will.  But, as always, things are a little different with Eli.  His "phase" lasted for weeks and he wasn't gaining weight.  He would wake in the night and announce his wish list to his loyal servant (AKA Mommy).  The list was simple, "BOT!"  I'd give him his milk, he'd drink some, and then he'd fall back asleep.....for a while.  He was doing this multiple times a night.  At first I thought he was just trying to make me crazy/crazier, but then I realized what was really going on.  He was tired.  Duh, he is a heart baby after all.  He was too tired to stay awake long enough to drink enough to satisfy him.  That coupled with the fact that he hasn't gained weight (actually lost a little) since mid-summer led us to resume some nighttime feeds again.  He takes prescription grade PediaSure which has 30 calories per ounce.  His previous formula was only 24-27 cal/ounce and his milk is definitely less than that. 

So my point is that I'm up.  It's late and I'm tired but it's a great chance for me to have some quiet time, check my email and watch mindless late-night television.  Who needs sleep?  It's very overrated.  During these late-night computer sessions I've finally started doing some research about congenital heart defects.  I'm pretty comfortable describing and talking about Eli's defects, but I haven't done much outside of that in regards to CHD.  Some of the facts I've discovered have really surprised me.  I feel compelled to pass them along in an effort to bring more awareness to the issue of congenital heart defects. 

Some of you have heard of Lane Goodwin.  If you haven't, he's a 13 year old child who has cancer.  Children and cancer should never be in the same sentence.  Lane, who is from Beech Grove, KY, has made some national headlines with the "Thumbs Up for Lane!" campaign to bring awareness to childhood cancer.  When I logged on to Facebook tonight I saw that, sadly, Lane has lost his battle on earth and earned his angel wings.  My heart is breaking for his family.  It's a fear that every parent has, but we've been so close to losing Eli and face such an uncertain future that for us the fear of losing him is a little more realistic than for most families.  Facebook is flooded with prayers for the family, expressions of sympathy, and people commenting about holding their kids a little tighter tonight.  I love seeing the outpouring of support for this family.  Please keep them in your prayers. 

As I read the tributes to Lane and his family I have a recurring thought that I can't shake.  It's a statistic I've come across in my late night internet trolling.  Unfortunately most of us can name someone (or multiple someones) we've lost to cancer.  Even sadder is that most of us can name a child who has battled cancer.  Cancer awareness is everywhere.  Deaths from cancer are an all too often occurrence in our lives. 

It is wonderful to see the conversations and comments regarding the need for research and better treatments for childhood cancer...obviously it is needed.  Cancer is terrible, it does not discriminate, and it ruins lives.  Believe me, I get it and I hate cancer, just like everyone else.  But here's the fact that I've come across in my late night internet trolling that has been weighing heavily on me: 

Everybody talks about cancer, cancer awareness, cancer treatments, cancer research, cancer funding, etc.  I am not unsympathetic to the cause.  Cancer stole my dad.  I get it, I get the pain.  My point is that CHD kills almost twice as many children a year as cancer and yet it doesn't get nearly the attention as cancer.  We need more research, more funding, more awareness.  It starts here with the families affected.  MY family.  YOU readers.  Start talking about it.  Then tell one more person.  Keep talking about it.  CHD is a killer.  Right now in our house we have a snoring daddy, a snoring dog, two sleeping boys, a momma on a mission, and a killer. 

Again, please, please, please don't think I'm trying to take away from the importance of fighting cancer and other terrible diseases.  My point is that there are many, many battles going on and I'm trying to bring more awareness to the one affecting us most.  Also, we've been blessed with a lot of people who care about us.  We are so grateful for the support we've been shown since Eli's diagnosis.  I know that his diagnosis alone has opened a lot of people's eyes to CHD, mine included!  As time has gone by and we've accepted what is happening, we're ready to start doing more.  I have no idea what route that will be, but we're realizing the need to raise awareness.  CHD affects too many families, kills too many babies, and causes too many tears to fall to not have as much community awareness as cancer.

We've been fortunate to get to know a few other heart families.  Some we've met in person, some through the internet (thank you technology!).  Please keep these babies in your prayers:  Eli, Caleb, Madison, Davie, Nathan, Iceley, Natalie, Liam, Rylan, Braxtyn, Lauren (a 25 year old CHD patient!), and the thousands more we don't know.  Of course, please pray for Lane Goodwin and his family at this terrible time.  And please, start/keep talking about CHD.  I think you'll be surprised how many people you know have actually been affected.  I'll randomly post more facts about congenital heart defects and ways to help & raise awareness.  For now, thanks for following along and for all the support over the past couple years.  We rely on your kind words more than you realize.

Tuesday, October 2, 2012

Boys' Birthday Party

As I mentioned in Zachary's birthday post we decided to have one party for the two of them this year.  We had a combo dinosaur/Elmo party and it was a blast.  We love showing off our fun little boys and they were so excited for their party.  Well, let me rephrase that...Zachary fully understood the party was approaching and was very wound up and Eli fed off of Zachary's excitement.

Of course by the age of five, Zachary's a pro at unwrapping gifts.  Eli's still learning but luckily Zachary is there to help "teach" him.  Zachary went first with some help from a cousin and a couple friends.  Eli strolled around the room seeking the attentions of various family and friends and would occasionally swipe one of Zachary's newly opened items to check out for himself.  When his turn came to open he helped for a little while, but then decided one of his new books was more interesting and he curled up on the couch with said book as Zachary & I finished the task at hand.  I think he may be more into it by Christmas, but we'll see!

It's said that a picture is worth a thousand words, so enjoy!

Each year we get the boys birthday t-shirts with a picture depicting the theme of their party, their name and age. 

It was hard to get this busy boy to hold still for a picture when he got his shirt.  This was the least blurry photo I had!

Stegosaurus cake made by Mamaw Linda.  We didn't want Zachary to be upset if anything was forgotten so I had given her a few pictures from some of his dino books so she could get all his important details.  Zachary was happy so we think she did a great job!

Eli's Elmo cake.  Another great creation by Mamaw Linda.

Zachary was VERY happy with his cake!

Eli loved his cake but he couldn't figure out why we kept trying to take his picture with it.

Alyssa's here, the party can start!!!!  Eli is infatuated with his baby cousin.  He was getting very upset while she was in her carrier because he wanted her out.

Great friends!  Zachary with Jillian and Joseph Hostetler.  I can't believe the three of them held still & smiled for this picture!  Jillian and Zachary are exactly two months apart and Joseph is a year younger.  Things get crazy when these kids get together!!!

Our attempt at a family picture.  Three out of four looking at the camera & smiling is pretty good with all the commotion going on around us.  If you look over Zachary's shoulder you can see the Elmo balloon photo-bombed our family photo!

Let the gift opening begin!  Zachary's helpers were friends Jillian and Joseph and second cousin Griffen.

The first gift Eli "borrowed" from his brother.  This boy loves cars and tractors.

Daddy gave Zachary some autographed items he's acquired.  This is a baseball and batting gloves signed by Danny Dorn, former Louisville Bats player currently with the Toledo Mudhens.

Our boys love balloons so we purchased a helium tank and filled the room with balloon bouquets.  One bunch slipped off its weight and was caught.  To keep it from getting into the ceiling fan Aunt Cara tied it into Aunt Kendra's ponytail.  It was really cute and Eli was fascinated by it.  If you've seen in other photos we got them each a large balloon too.  Of course they stayed with the theme and were a large dinosaur and Elmo.  They're each about 3 feet tall and will probably float in our living room until Christmas.  The boys were really happy with this surprise.

One of Zachary's favorite gifts was from Aunt Judy.  She gave each of the boys a Dream Lites Pillow Pet.  Both were puppies.  After the major parts of the party were over and we were all just visiting, he kept turning off the lights (without warning) so he could see the stars projecting onto the ceiling.  Just before falling asleep with it on the couch he named his puppy Glow.  It's so sweet to see my tough little boy whose main interest is something so mature be so enamored with a child's toy.  I love that he can still let himself be a little kid!

He loved his dinosaur umbrella.

Looking at signed photographs from Colts defensive tackle Ricardo Mathews.  Bryan had sent him the pictures and a letter asking him to autograph them.  Bryan told him the pictures were going to be for Zachary and bragged on how great a big brother he is to Eli throughout all of Eli's issues.  Mr. Mathews autographed all four photos and sent a pair of game used autographed gloves (that's what Z is looking at in this picture).  The gloves are HUGE!  My hands aren't little and they were really big on me.  He also sent a handwritten letter thanking us for being fans, saying he'd keep us in his prayers, and included some bible verses.  GO COLTS!!!  Even if you're not a Colts fan, please cheer for #91 Ricardo Mathews just for being a nice guy!

Eli LOVED the gloves and wore them for a long time. 

Another autographed item:  A signed shoe from Ryan LaMarre, a center fielder with the Pensacola Blue Wahoos.  The Wahoos are the double A team of the Reds organization and Zachary loves saying "Wahoos!"  In this photo I was showing Zachary the dirt and clay around the spikes.  He wrote "Happy Birthday Zachary" on the shoe above his signature.

Zachary checking out some signed baseball cards from Ryan LaMarre.

Eli's turn!  The first thing he opened was an autographed baseball from Aaron Brooks, a pitcher with the Kane County Cougars.  They're a minor league team of the Kansas City Royals organization.  Eli thought it was cool and promptly thew the ball to someone...he's got a good arm!

A new Sesame Street book!

Eli took a break from opening gifts.  I don't know what funny thing made me laugh, it's hard to tell with the group we had gathered in our house!

Hot shot stole his brother's sippy cup.

By this time Zachary was helping open Eli's gifts and Eli was wrapped up in a new book.

This is what got Eli away from his new book....a musical card.  It plays the Mickey Mouse Clubhouse theme song. 

Time for C~A~K~E!  Zachary took a while to blow out his candles but he got the job done.  Eli didn't understand and didn't blow his out.  In the end Zachary blew out Eli's too.

Now that the candles are gone Eli gets the concept of blowing through his lips.

There was never any question regarding what to do with the cake on his plate!

This might be my favorite photo of the day.  Hours after the party was over, the new toys played with, and birthday shirts spot treated, they resorted to one of their favorite activities....Pots and Wooden Spoon Concert.  The music lasted almost an hour and they both played their hearts out.  

We need to use this time as a thank you to some people.  Thanks to Mamaw Linda for the wonderful cakes.  Thanks to Mamaw Betty for bringing some food and the tedious task of cutting veggies for our veggie tray.  Thanks to Kendra for being our gift secretary and writing down what came from whom.  Another big thanks to Kendra for bringing the large dinosaur and Elmo balloons from Evansville in her small Sunfire.  I wish we'd gotten a picture of her with those two huge balloons in her little car!  Thanks to Andrea Hostetler for being our photographer while Bryan videoed and I helped open gifts.  And a big thank you to everyone who came or sent any type of birthday wish to our boys.  Eli's birthday isn't until late October so we'll do a small gathering with supper & cake for him like we did for Zachary's actual day.

I loved their party this year and am almost looking forward to next year.  Almost ;)