Wednesday, June 05, 2013

Sent Home Early

Kudos to Miami Children’s Hospital

They run a tight ship at Miami Children’s Hospital. We’ve stayed at four hospitals in the last four years since we’ve been back in South Florida: St. Mary’s in West Palm Beach, Joe DiMaggio’s in Hollywood, West Boca Medical Center, and Miami Children’s. Miami Children’s stands head and shoulders above the others for these reasons:

  • They put the patients and their families first in each and every interaction. It’s obvious that this is a part of the corporate culture.
  • They are organized.
  • There is always a plan and they plan for adjustments to the plan.

When families are dealing with trauma and hardships with their children, these three things lighten the load. In fact, this demonstrates a cognizant effort on the hospital’s part to help shoulder the burden. This has tremendous therapeutic and healing affect on a family working through some of life’s most difficult trials – that is, children afflicted with sickness, disabilities, or injuries.

A change of plans

The original plan for our hospital stay was to be admitted from Monday through Friday of this week. But doctors on Allie’s case were able to collect all the data they needed on Monday and Tuesday to accurately diagnose and categorize Allie’s seizures.

For the past three years, our doctors had doubts about the kind of seizure activity we were describing to them and they had very little success capturing data about her seizures beyond our description of them and some home video we’ve shot. Allie did not cooperate well in previous attempts to capture data so understanding, diagnosis, and treatment were hit-or-miss.

Allie is having tonic seizures. Her seizures originate in her brain's right frontal lobe. Doctors arrived at this conclusion with data gathered from an extensive MRI on Monday as well as analysis of video EEG information captured during two strong seizures Tuesday morning.

This information does not change life for us much. The doctors assured us that Allie will continue to have seizures, but there is no reason to believe that they will become worse than they are any time soon and that we just need to continue to care for Allie the way we have been.

What that means for you if you love Allie or have been tracking with us over the years is that you need to keep praying for her – and us. Since 2007 we’ve been crowd sourcing your prayers here on this blog and on our Facebook pages.

Sometimes I feel a little weird about telling the world so much about what we go through, but I don’t regret that people pray for Allie and Susan and me and that we are encouraged by your comments. People I don’t interact with very much on the job stop me and tell me they read this blog and it takes away the aloneness that comes with living a life that has so many limits.

Today somebody reached out to the Charming and Beautiful Susan from three thousand miles away and told us that his church’s quilting ministry is making Allie a prayer quilt. This person is a friend of a friend whose heart has been moved with compassion. So as weird as I feel about putting it all out there, I’ll anxiously wait for the arrival of a package sent to us from people we don’t know and will probably never meet but have serendipitously come across our story.

I recognize their ministry to us is the hand of God on our lives.

allie-with-iPhone

4 comments:

Michele Valentine said...

Your pilgrimage is one to be told. We never know what The Lord is up to. We have to just be in pace with His Holy Spirit, as you and Susan are, and be expectant that every little thing, including seizures will bring glory to our Lord. Your precious girl has and will always be in my prayers. Love, michele v

Anonymous said...

Sometimes no words come.....but, please know, Randy & I think of you so often & we pray.....for you, for Susan & especially for Alley. We pray for her to know & feel the prescence of the Lord embracing her & taking her pain & suffering upon Himself. For the peace that passes all understanding. We love you guys & know we will b faithful to continue praying for all of you. To God be the Glory!! Randy & Joyce

Bryon Mondok said...

Thanks, you guys. I appreciate your kind words, thoughts and prayers so much.

Bryon

Trip Kimball said...

Bryon,
Testimonies like these, of your family's life, are precious and the substance of genuine faith. It's not sensational, in the worldly sense, and yet it is. Perseverance in life and faith are way under-valued.
You guys are a testimony of this and it is an important influence on those you connect with.
blessings,
Trip