Friday, June 14, 2013

We had to leave him behind

Each night we have to spend about three hours distracting Eli from his eye patch.  Most of the time he wears it like a champ.  But we have to do something "fun" as soon as it goes over his eye.  Sometimes it's swimming in the inflatable pool with his big sister.  Sometimes it's eating dinner.  (Yes, Eli thinks eating is pretty much the best thing ever.)  Last night it was a trip to Home Depot.

As we were finally leaving Home Depot, Eli started yelling, "Momo!  Momo!"  Which translated means: "Elmo."

Sometimes he says this for no reason.  He's bonded so strongly to the character that he only wants to watch "Momo" while eating his breakfast.  Heaven forbid we should forget to turn on Momo in the morning!  So when he started yelling "Momo" I didn't really think anything of it.  That is until he started trying to jump out of my arms.

"Momo!" the cries went.

Still clueless I tried to put him in his carseat.

"Momo!  Momo!  MOMO!"

By this time Eli was using his freakish strength to prevent me from buckling his car seat.  That's when Heather pointed out that there was an Elmo doll in the backseat of the car next to us.  And I had foolishly walked past it.  Worse, Eli thought it was his Momo!  And because Eli runs on a strict "no toy left behind" policy, he wasn't going to leave Momo stranded in someone else's locked car.

So it was up to Dad to buckle him in and try and explain property rights as they've existed since Thomas Hobbes helped to articulate that vision in the 17th century.

But Eli wasn't interested.

In fact, I'm pretty sure this is a faithful recreation of that conversation:

Eli may have forgiven me, but he hasn't forgotten, as no one is allowed to touch Momo this morning.

Momo with a place of honor for breakfast

Monday, June 10, 2013

Disability is Not the End of Life

I found this video painful to watch at times, but I am moved by someone who despite suffering totally loves God. This is a true inspiration.
"The hardest thing is loneliness. I am my own greatest enemy when I am left to my loneliness."

This is a story of how Roger finds hope in the midst of living with cerebral palsy.

Thursday, June 6, 2013

Shiver Me Timbers

We have an update on Eli, but first we wanted to say that God is awesome.  Leading up to Eli's doctor appointment we were worried about his fever.  So worried, we took him to his pediatrician who said that if Eli was still running a fever, he wouldn't be able to go to the ophthalmologist.

That was devastating news.  We were facing another medical crisis complicated by Eli's strange fevers.

So we did what we always do - reach out to a few people we know are willing to go to battle for Eli through prayer.  I'm thrilled to announce that Eli woke up fever free.  There's no other way to describe that than a miracle.  In all of the fevers Eli has had, this was the shortest one yet, and it broke in time for him to go visit the doctor.

Eli walking into the doctor's - a miracle by itself!

Consistently rated a top Doc.  Something we'd agree with!

The second part of our good news is that Eli got the best possible diagnosis he could have.  (Short of having nothing wrong!)  Like all things Eli, we won't know the full extent of Eli's eye problems for awhile. 

We do know a couple of things:

  1. His issues do not appear to be structural, which means it's most likely an issue with muscle tone and neurological development (in this case, this is good news.)
  2. It does, however mean that he will need to wear an eye patch for a few hours a day.  Sadly he's not allowed to wear a pirate eye patch.  So much for teaching him to talk like a pirate before kindergarten.  Instead he wears what is basically a band aid over his eye.  We also need to give him eye drops each morning to "strengthen" the eye muscles.  The doctor has warned us Eli will hate both of these things.  Which of course, makes us excited.
And hate them he does...

So what does this mean going forward:
  1. Pray for the eye drops to work.  There's a chance that eye drops will be enough to solve Eli's problems.  If not, we're looking at long-term use of glasses and likely surgery.  That's not a route we'd like to go down.  We really believe God can perform a miracle on this.
  2. Pray for our endurance.  This is a 6 year process.  On top of another 3 years of braces, we're not looking forward to this.  It's a lot to subject Eli too, and it's a lot to have to endure as parents. 
  3. Pray for Eli's health.  Eli's had it rough in his 18 months.  Now he's got to be poked and prodded on both his head and his feet.  Please pray for continued health for him (and us!).  The next thing to go (location wise) would be his middle, and NO ONE wants to be on the business end of Eli's butt. 
Superman has a fortress of solitude - Eli has a "cave of TV's"
Overall this visit went about as well as we could have expected.  Which is frankly unusual for us.  But we're tired of all of this, as is Eli.  Yet when I look back on the last 2 years, I'm struck by the perspective all of this has given us.  It makes Heather and I appreciate one another, our family, and our friends more.  It also lets us see the world very differently when we get to see - no depend upon - God's grace on a daily basis.  

I'm reminded of what Paul said in the midst of being in prison and beaten: "We rejoice in our sufferings because we know that suffering brings perseverance; perseverance character and character hope."

Heather and I understand this more than we'd like.  But it also let's us see God's mercy and love in a very personal way.  It's that closeness that truly changes us.

And that's a good thing.

Tuesday, June 4, 2013

Prayer Request

I have gone back and forth about posting on the blog about Eli's latest issue mostly because I tend to take comfort in denial. But today, as I am overcome with anxiety, I feel strongly that I need to post a specific prayer request for Eli. Time and time again, God has showed up in miraculous ways as a direct result of specific prayers for Eli's healing.

As I have spent time recalling all the miracles we have witnessed, I am praying for God to show up big time.


Today, we are asking for some big prayers.

We knew when we were pregnant with Eli, that there were some underlying neurological issues the doctor was unable to pinpoint. Never in our wildest dreams, did we ever imagine the path we would be asked to walk.

About a month ago, we had an appointment at Children's Hospital for Eli's annual piggy check with the Dr. Mehlman. As Eli was showing off his awesome walking skills, the Orthopedist pointed out a issue with Eli's eyes. After taking Eli to the doctor the next day for an eye check, we were given a referral to a pediatric ophthalmologist. The doctors are concerned that Eli is losing vision and that his brain is rejecting his eye.

Our early intervention team has been an amazing support & resource. Our services facilitator contacted Cincinnati Association for the Blind who, despite not having a specific diagnosis, graciously offered to go to our appointment with us and explain the doctors findings. Eli's physical therapist has come out to see Eli and evaluate him, despite him being discharged from PT, and other members of the team spent several hours going over Eli's specific skill sets so we would have a very clear idea of a definite baseline as we move forward.

The happiest kid EVER
After waiting nearly a month, we finally, today, have our appointment with the Ophthalmologist. In true Eli style, he is making things complicated. He has been running one of his infamous fevers since Friday. The eye doctor will not see him today if he is running a fever. Eli woke up this morning fever free however, we are asking for prayers that he remains that way through our 1.5 hour appointment that begins at 12:15.

If you are the praying type, we are asking for specific prayers for Eli & us today :)

  • For Eli, that he will sail through this evaluation easily (which is scheduled during nap time) , and without any undo stress.
  • That Eli's vision and eye health be restored.
  • That Dr. Burke will be able to come up with a conclusive and appropriate plan of action to correct issues with Eli's eyes.
  • For Eric and I to have a calm heart and clear head that we are able to understand and hear everything the doctors are telling us.

I think Eli could rock some pink glasses? Real men wear pink right ;)?

Both Eric and I know God is with us, but as parents, we are worried at what this looks like for Eli's future. We are praying for another miracle and know that God will show up, even if it isn't how we expect.

Thank you everyone for your love and prayers. Our hearts break for our son as he experiences another challenge. We have taken comfort the texts and emails that have been filtering in throughout the evening and this morning, so thank you. We will keep you all posted after our appointment :)

This is what Eli has to say about fear :)