You will have significant experiences.
I hope that you will write them down and keep a record of
them, that you will read them from time to time and refresh
your memory of these meaningful and significant things.
Some may be funny. Some may be significant only to you.
Some of them may be sacred and quietly beautiful. Some
may build upon another until they represent a lifetime of
special experiences.
- Gordon B Hinckley

Thursday, May 19, 2011

Everett's Eyes...

Dear Family and Friends,

I'm writing you today to ask for some prayers and positive thoughts in the coming weeks.  I know many of you continue to pray for Everett daily, and we SO much appreciate it!  We can feel those prayers surrounding us with positive love everyday!  I was hoping that you could add some specific prayer requests on Everett’s behalf as we face some new worries and possible bumps in the road. 

Today I took Everett for his six week follow-up with the Retinal Specialist.  The appointment was supposed to be standard protocol for Retinopathy of Prematurity (ROP) follow-up and was actually going to be his last invasive retinal exam.  However, the doctor found some areas of concern in Everett’s right eye.  Six weeks ago Everett had completely regressed ROP in both eyes.  However, on today’s exam, Everett’s right eye showed Stage 2 ROP, borderline Stage 3 (you may recall that Stage 3 ROP requires surgical intervention and carries a risk of blindness).  I was completely taken aback!  I guess I’ve become a little soft and a little too accustomed to good news.  I felt totally unprepared.  I sat there with my mouth hanging open, too shocked to ask any questions. 

The specialist said he feels there is a 20% chance that the disease will progress to Stage 3 and require laser surgery to treat it.  If this becomes the case, Zac and I will have to evaluate which surgeon will perform the procedure and where we would like to have it done.  Most likely we would advocate for Everett to be admitted back at CHLA and have the eye surgeon who followed him for three months perform the procedure.  Just the thought almost brings me to tears!  We hope and pray that this is a decision we are never forced to make.

Everett’s pediatrician also recently diagnosed him with a left inguinal hernia.  This is fairly common in preemies and thinking back to how long it took Everett’s testicles to descend, it is not surprising that his inguinal canal (the testicles drop into the scrotum through this canal) hasn’t completely closed.  He has some fluid buildup in the canal that the pediatrician is watching closely.  If the canal doesn’t close on its own, surgery would be required to close it.  For this surgery, we would defiantly take Everett back to CHLA and have the surgeon who performed his bowel surgeries also perform the hernia operation.  As she said “That kid’s belly is mine for the rest of his life.”  Again, this is a decision we hope and pray we never have to make. 

This afternoon we received approval to begin physical, occupational, and developmental therapy.  Everett qualifies for two two-hour sessions per week.  One will be with a physical therapist and the other with an occupational therapist with the developmental therapist mixed in with both.  I am excited that he qualified for therapy, as early intervention is the number one most successful treatment that helps preemies catch up as quickly as possible.  But the thought of scheduling these therapies in between full-time night shift work has me feeling a little overwhelmed at the moment.  Sometimes I already feel as if there aren’t enough hours in the day :-)  I know things will settle into routine, but some prayers on my behalf would be appreciated as I learn to balance work, doctor appointments, therapy, sleep, household chores, and family time.

Other than these concerns, Everett, Zac, Jack and I are doing really, really well.  I tell Zac almost every night that I am completely happy.  Life is good :-)  We count our blessings everyday and continue to be thankful for the miracles we’ve received.  We also are thankful everyday for your prayers and for the love that you’ve surrounded us with.  Attached is a picture of our solution to Everett’s teething :-)

With Love and Continued Appreciation,

The Bollinger Family

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