Today eclipses the ten-week mark for Seton Blaine.  For the past couple of weeks, Seton has made marked improvements in his growth and swallowing.  Late last week he decided to take a step backward.  He became fairly congested, and his breathing became more labored.  Some days this week he has done better and some worse, so we will continue to monitor until we meet with Dr. Habersang again next week. Using a borrowed scale, Shawna has roughly measured his weight at 7 pounds 11 ounces, and he is more than 22 inches tall.  Does anyone else find irony in referring to someone who has yet to stand as “tall?”  I ponder.

We received a call this week about Seton’s application for the Medically Dependent Children’s Program (MDCP), and he has been approved for assistance.  This will help greatly with his home health care needs and medical situation.  We are sincerely thankful for this, especially considering his coverage under private insurance ended last week.  It is one more burden removed from us.  In order to complete this process, a nursing home stay is required to further assess his level of necessary care.  The only facility we were able to use for this is in Hereford, so we loaded up all his equipment and things and made the voyage last night.  The stay requires two days, so we checked in at 10:30 pm and left about 12:30 am.  Yay, for red tape.  Our first family vacation on the books.  We commemorated the event by purchasing Blizzards from Dairy Queen.  What can I say?  I like to travel in style.

It is pretty safe to say we are out of crisis mode and into living the reality of our life.  It’s really a big thought.  Somehow I fooled myself into thinking it would be better or easier than it is most days.  How many days can you put that smile on your face and say all the positive things others like hearing?  It’s assuredly finite.  Then I realize how much of this circumstance I’m trying to carry on my own.  I’m frustrated with myself because I keep fighting for control of a situation that is absolutely uncontrollable – a glaring character flaw.  I’m stricken with guilt and selfishness for ignoring so many positive accomplishments and milestones; waking only to focus on the difficulty and struggles.

I know God’s got it.  From beginning to end, He’s got it.  I’m reminding myself through this right now that all I have to do is trust and believe in Him and renew my mind and my strength with His promises.  Promises of good and not evil.  Promises of a hope and future.  Our family and friends still rally around us, even though the “excitement” has worn thin and time moves on.  Thanks to you all.  Please continue prayers for Seton’s brain to fully develop and for the patience and grace we need as we wait and walk.

Zane

“Let us hold unswervingly to the hope we profess, for he who promised is faithful.”  Hebrews 10:23