Thursday, August 4, 2016

2016-2017 School Year Begins

It's been a long time since I've posted here.  I often think about it as different events occur, but I have opted to spend time with my family rather than at the computer.  But today is different.  Today I must inform you of the latest news in our family. 

Today is Eli's first day of kindergarten!  That's right, Eli is in kindergarten and Zachary started third grade!  Our babies are growing so quickly!

Getting him ready for kindergarten has been a long time in the making.  He had two years of preschool (both years were at developmental preschool and one year was also at a regular preschool).  Through the summer he attended weekly tutoring sessions just to get some extra help with his letters, phonics, and other aspects.  He is still in outpatient therapy and a lot of the therapy has been geared toward kindergarten prep such as cutting, walking stairs, managing his backpack and lunch box well, and playing safely on the playground equipment.  Eli will continue to have PT and OT through school services and we've opted to also continue his outpatient therapy (pending insurance approval) for the time being.  Back in April we had a meeting with several members at his school about him and what needs we could anticipate him requiring before starting kindergarten.  We've planned and prepped as much as we can, now we are at the point that we see how it goes and adjust accordingly.  The most important thing is that Eli is in an environment that we are comfortable with and with people who are very welcoming to him.  The boys love the fact they are in the same school now.  Last night at Open House we found out the 3rd grade and kindergarten recess times overlap, so they'll get to see each other some in the middle of the day!

We wondered if Eli would be upset when it came time to actually leave him at school.  The first couple days, parents are allowed to walk them into the classroom so that's what I did.  After a hug and a kiss he got settled at his table.  I snapped a picture or two (didn't ask him to look at me because things were going well and I wasn't going to chance making him mad!!!), then I left.  He waved bye to me, but was fine!  Once I got to the van I had a few tears.  Not a bunch, but just tears of thankfulness for many things.  Mainly for the fact that he has overcome so much and worked so hard to get to this point.  Also because of the willingness of so many areas of the school staff to be excited for him to be there and work so hard to do what is best for him.  Thankful for the boys being together and for me to have this one on one time with Charlotte.  There are many more things I'm thankful for about this, but those cover the major points!

Enough sappiness (for now!).  Here are some photos of the boys as they start the 2016-2017 school year! 

Eli working with Ms Brooke (one of his therapists) on the school playground this summer.  We were trying to get him used to the playground equipment before it was full of other kids trying to play as well!

Working hard on this curved ladder!

Almost there, Eli!  He worked really hard that morning and we learned a lot about what he was and wasn't comfortable with.

Making his way across the suspended bridge.

Zachary with his third grade teacher, Mrs. Wadsworth.  The glasses on top of her head make her taller than him for now!  Eli had to get in on this picture, but wouldn't let me take one of him with his teacher!

Some major attitude coming out of this one the night of Open House.  I had to plead, bribe, and threaten for this picture.

Our third grader!  He's getting so grown up!

He's a little more photogenic this morning!

Goodbyes for baby sister before the first day.

At his table checking out his classmates.  I didn't dare ask him to look at me or smile!

💚💙  Be still my heart  💙💚
I pray they're always close and look out for each other. 
To reduce traffic congestion, the school has staggered release times for car riders and walkers.  Kindergarteners are let out first, then groups of siblings, and lastly the rest of the car riders and walkers.  For a couple days, Eli will be leaving just a few minutes before the other kindergarteners so he can get accustomed to the hallways and routine before having to navigate it with the other kids around him.  Today, Zachary was released with Eli and I got this precious picture of them coming out together.  Zachary was using Eli's lunchbox to shade him from the intense sun.  Such an amazing big brother!

The first day was a success!  Neither boy had any disciplinary reports in their folders, no blood was shed, and they both plan on going back tomorrow....I don't think it's fair to ask for much more on the first day!!!

Everyone, please keep all students, teachers, administrators, and school staff in your prayers as this 2016-2017 year begins.  There are so many negative things in the world these days and school should be a safe, fun, productive place for everyone.

~~~~~~  The days are long, but the years are short  ~~~~~~

Tuesday, January 5, 2016

Five Years...and Counting!

Five years ago today, Eli was ten weeks old.  Exactly ten weeks old.  We took him to the doctor for his 2 month check up.  We had a few other questions in addition to his routine check up.  He'd been vomiting a lot.  No, it wasn't spit up.  He was vomiting.  There was no rhyme or reason to it.  He might vomit a few minutes after a feeding, hours after a feeding, during a feeding, or he might go days without doing it.  He didn't seem to be gaining much weight.  Also, he was sleeping more.  But when that beautiful, brown eyed baby was awake, he was so alert!  He followed us around with those eyes, he knew who we were, he knew his big brother, and he was smiling at us a lot.  He had wet diapers, he had poopy diapers, he took a pacifier, and he nursed well with the exception of the two days before the appointment.  So we weren't overly worried...but we were still worried.

Five years ago today, I took him for a check up.  There, we found out not only was he not gaining weight anymore, but he had lost weight!  He was 8lbs 12oz at birth.  We know he got up to about 9 1/2lbs.  Five years ago today he was 8lbs 5oz.  He weighed less than he did at birth.  Later that day, he was admitted to our local hospital.  Later that night, after a chest x-ray showed his enlarged heart, he was transferred by ambulance to St. Mary's in Evansville.  A few hours into the next morning (really the middle of the night), we had a pediatric cardiologist standing in front of us drawing pictures of a normal heart and pictures of Eli's heart.  Those pictures were so different from each other it was terrifying.  (Yes, I still have those drawings!). Even more terrifying than her pictures were some of her words, such as  "open heart surgery" and "survival rates".  Less than 24 hours after our appointment Dr. Amy's office, Eli was baptized and loaded into a helicopter to be transported to Indianapolis.  Bryan & I drove home.  We had to pack and make arrangements for Zachary before we headed to Indy.

Once in Indy, we were given more information.  A lot of information.  Information we didn't want but had to face.  Surgery was inevitable, but his case was very complicated.  They had never seen or heard of a ten week old baby just receiving a diagnosis like his.  (Not 100%, but I'm not sure they have since then either).  Doctors needed to confer and determine which surgery would benefit Eli the most.  Surgery was set for January 10.  In the meantime, we waited.  We held him, we kissed him, and we watched him.  Basically, we watched him deteriorate.  He was dying.  In the few days between his diagnosis and surgery, we saw his energy level plummet.  He was being tube fed because it took too much energy for him to eat.  He was on multiple medications that were slowly increased as his heart function decreased.  We told him goodbye, not because we thought he would die, but because we knew there was a chance (a one in three chance) that he wouldn't come out of the OR.  So, yes, we had to tell him goodbye, just in case that happened.  As we did that, every fiber of our being was pleading and begging with God to let him live. 

I won't go into more details of the next five years because most of you have been following us that long.  Let's just say he made it out of that OR.  And through three more heart surgeries.  And battled a staph infection for over a year.  And has had a tough road to recovery from massive strokes.  And has been in multiple therapies for well over half his life just to keep up with developmental milestones and stroke rehab.  And has had many, many echocardiograms, heart catheterizations, blood draws, doctor appointments, and countless other procedures and tests.

But he's alive.  And just this morning, on the fifth anniversary of the appointment that began this journey for us, he got dressed almost completely by himself.  He's been pretty consistent doing his pants, socks, and underwear (YES!  He's fully potty trained now!!!).  Shirts are harder for him because of the limited range of motion of his left hand and arm, but today he took initiative.  He asked for help getting his pjs off his right arm, but then he removed his shirt alone (he has done that before).  Then, this is the exciting part, he put on a long sleeve shirt BY HIMSELF!  It took a while and he asked a few times for help.  I showed him how to do it, but then started him back at the point he was at before asking.  After several attempts, HE DID IT!  Let me tell you, once this kid decides to do something, he can accomplish anything. 

So, for those of you who think you're having a bad day, suck it up.  No, I don't mean all the time.  Everyone is allowed a complaint now and then.  But, overall, get some perspective and suck it up.  If that five year old can go through the hells he's been through and still smile, tell jokes that make no sense, and laugh, then I promise you'll get through your bad day.  (That little speech is directed at myself too.  None of us are exempt from feeling sorry for ourselves, but we all need to learn to handle it better.)

The following are a few pictures from the night before Eli's first surgery. 

Zachary was 3 years old and didn't really understand what was going on.  We told him he didn't have to, but he could kiss Eli bye before he left.  Zachary immediately wanted in bed beside him and snuggled his baby brother.  The tubes and wires didn't phase him a bit.

We were so afraid this was our last family photo.  Bryan and I don't look the greatest here, but we had both our boys with us and nothing else really mattered.

The last picture we had of him before he was taken to the OR.  Obviously neither of us had any sleep the night before but we needed to take as many photos as possible and give him one more kiss again and again and again.

This was just hours after the surgery he wasn't supposed to survive.  I realize it's very hard to look at him with all these machines, wires, IVs, and monitors, but please understand how exciting it was for us to see all that.  If he didn't make it, none of that would be there.  Each thing was an important piece to his well-being.  And honestly, we didn't even notice most of it, we just saw our perfect baby boy with a beating heart!

And this is the boy wonder who wouldn't pose for a picture today.  He's the most stubborn, head strong, and determined to get his own way boy I've ever met.  And I'm so thankful for those qualities because those (along with all his good ones!) have made him the fighter that he is!

As always, thank you for reading.  We are grateful to have your support on this journey.  Please continue to keep us in your prayers.  Who knows what the next five years will bring.  Heck, some days, it's hard to make it five minutes at a time!  Thank you and remember to cherish Every Little Beat...