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Tuesday, August 2, 2011

Appointment Update and Frustrations

Luke's appointment was this afternoon.  It was relatively quick and we were home by 5pm.   We rode the elevator to the 11th floor, where they now know him by name.

He is independent and wants to check himself in.

We wait a few minutes and are called back.  After a quick vision exam and pressure check the doctor comes in with a medical student.  She reviews his pressures and then I ask about his vision loss.  She says according to the last 2 visual fields he has "lost a lot of vision".  According to the doctor, Luke should not have lost the amount of vision he has for the eye pressures he has.  All the tests on the retinas came back normal, which she said was good, "but it still doesn't explain what is wrong with Luke."  WONDERFUL.  Now, can some one please explain to me WHAT IS WRONG WITH LUKE?  She adds, "Perhaps we will not ever know.  I have NEVER seen a case like Luke's before."  Again WONDERFUL.

 These doctors at Casey Eye OHSU are the best of the best.  What is going on?  I can feel the heat in my face rising.  My heart begins beating faster.  "So now what?" I ask.  Dr. Edmunds explains that she is going to consult with Dr. Penessi and then consult with an neuro-opthomologist and then if they still can't find any other cause for the vision loss they will only assume the vision is loss is due to the glaucoma and nothing else.  In the mean time they have scheduled another visual field test (because she doesn't believe the last two are accurate; even though they are  identical).  So here we go again.

I feel that after 18 months of non-stop doctors appointments and testing and visual fields and more testing, and photography and more testing and eye drops and more testing we are no closer to knowing what is wrong with Luke than the day we had our first appointment at OHSU.  UGHHHH!  It is just so frustrating.  I want answers and solutions and a fix (all of which I know we don't have and may never get).  I have to find peace with that and continue on.  I have to continue to advocate for what he needs, what he deserves and for the best medical care I can get for him.

This road has been long (and will continue to be long) and I need to just keep walking, one foot in front of the other, knowing that God KNOWS every hair on Luke's head, every dream in his heart, and every issues, diagnosis and disability that he may face.  I have to rest in the PEACE that surpasses all understanding that guards my heart and mind.  I have to live as an EXAMPLE to my children by standing in FAITH in the midst of uncertainty, and TRUSTING God to direct our path while BELIEVING that God has the POWER to HEAL, and that HE is still a God of MIRACLES.

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