Thursday, May 17, 2012


We learned this past week during a follow up with the oculo-plastic ophthalmologist that Jude is going to need surgery sometime in June and it appears the cysts within Jude's right eye socket and around his eye are growing.  The cysts on the left have not grown and are deeper in the socket and therefore can be left alone.  We knew he had the cysts after our first appointment with the ophthalmologist at Children's Mercy but the question remained what the course would be as far as what/when something would need to be done.

The surgery is outpatient (thank goodness) but requires general anesthesia none the less, which is a bit scary especially with our soon-to-be three month old.  The plan is still to start with conformers (the beginnings of prosthesis for the eyes) for the left eye at the end of month and then to have a conformer placed on the right side during the surgery. 

Anesthesia is always a fear in young patients like Jude, but with this surgery another fear is that the doctor said he couldn't tell us exactly what they would do to remove the cyst until they were in surgery. Best case scenario they remove the cyst completely and leave the remaining eye intact.  Worst case they may need to remove part of the eye along with the cysts.  Knowing there is a possibility of light perception the idea of him losing any of that would be sad.

I feel more and more everyday that the life I am living is not my own but truly God's plan for me.  It goes back to my choice to go to Rockhurst University and then meeting my wonderful husband and deciding to become a nurse.  All of these choices which I thought I was making independent of others, were really part of my larger plan.  A parent from the CCVI, who I have yet to meet, but have been corresponding with via e-mail, told me about how she had "whispers from God" before she learned of her daughter's diagnosis and now loss of vision. 

I feel the exact same way with Jude. My freshman year of college I volunteered at Children's Mercy Hospital and became involved in many different activities with the children there.  My junior year I spent an entire semester at the Children's TLC building (which shares its facility with the CCVI).  My calling to become a nurse and share my passion and understanding for those who are ill and have special needs... The scare we had after Jude's 20-week ultrasound with the possibility of our child having a genetic abnormality... All of these moments that I look back on are "whispers from God" in which He was helping prepare me for the place I am today. 

St. Jude: Pray for us.

No comments:

Post a Comment