We're Back

I’m not going to say there’s never a dull moment....  but those moments don’t last long around here.  After just celebrating 40 days in a row of not being admitted to the hospital, we are back.

During those 40 days, we had some great moments.  Maddie’s birthday, a few home projects, getting time with friends, and were even able to sneak in a date :)  We were even audacious enough to establish some new family routines...  The most recent highlight, without a doubt, was being able to go to the beach with Jonny’s family for a few days.  We haven’t seen most of them since last Labor Day, which meant the vast majority had never even met Nathan.  It was refreshing to be with some of the men, women and children we love most!  The 11 cousins (all 10 and under!) had lots of questions about Nathan and were the perfect combination of hilariously inappropriate and amazingly tender as only children can be :)  Madison was (almost) all giggles and smiles and loved having her whole family together and experiencing new and fun things.  Here are a few pics. 

















A few days ago, Nathan started sounding a little junky so we started working through our bag of tricks we have been equipped with to help him.  At 3am on Friday morning we decided that despite our best efforts, he was continuing to progress in a direction we were not comfortable with so we loaded up and started the 9 hour drive home from the beach.  He wasn’t in a desperate place, so while we were aware of different hospitals we could have stopped at along the way - we kept driving and just came straight to Akron Children’s.  They agreed he was working too hard to breathe and put him on Vapo-therm (think Level 2 oxygen support) and for now he is back flirting with the ICU nurses.  
Will this affect the July 17th surgery in Dallas?  Quite possibly.  Already he was supposed to have an MRI this week to check for neurological concerns (tumor, extra fluid pressure around the brain, etc.)  The results of that study might change some of the timeline for his first major Apert related surgery in Dallas.  The timeline for the MRI is  now automatically pushed back...So, once again... We just don’t know.  The needs of the moment balanced with the ongoing needs is once again complicated, and kind of overwhelming.  Two days ago we were water skiing... 

 

PLEASE PRAY:
*  For LOTS of wisdom and really good and effective communication between Nathan’s team of Doctor’s (locally and in TX) and ourselves.
*  For Jonny and I to continue to entrust our precious son to the Lord...  We are in so. far. over our heads.  It’s painful, exhausting and frustrating to have to continually come face-to-face with how limited we are in caring for Nathan.  We have to trust the judgements and decisions of those who are far more knowledgeable and skilled than we are and yet, he is OUR son.  No one’s heart aches and longs for his well being the way ours do.
*  For Madison as she just keeps trucking along in her little world where things unexpectedly change on a dime.  My mom flew in this morning for the week to help so we are thankful for the stability and help she will provide.

Thanks for your care and prayers for us as we continue along. 

You have kept count of my tossings, put my tears in your bottle.  Are they not in your book?... This I know that God is for me.
Ps. 56:8-9




Comments

  1. UnknownJune 22, 2014 at 1:23 PM

    Prayers continually for all of you. I can't imagine what you are going through but so thankful that you have the Lord and He will get you through it.

    ReplyDelete
  2. Greg MJune 22, 2014 at 10:53 PM

    Love you guys deeply

    ReplyDelete

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