Update on Daniel

It's been a long, long day.  We started our morning early by doing a service project with our FIAR group.  (More on that later.)  We gots lots of hugs and encouragment there and several friends even brought things for Daniel to have during his appointment.

This one was a huge hit - thank you Savanna!



We left early, went by Chick-Fil-A for lunch and then home.  I should clarify that this was Joshua, Christopher, Daniel and I.  The other children stayed with a friend at the service project to continue helping and to have a potluck lunch.  After giving Joshua his shot, Daniel and I headed to Duke. 

We arrived a little before 12:30.  It was after 5pm when we left.  It was a long, long afternoon.  We spent some time waiting - and more time in tests. 

We met first with the doctor who was very, very nice!  I explained about Daniel's sensory issues, being sure that it would come up.  She thanked me for letting her know, but I still wondered if it would make a difference.  She could not have been nicer or more patient.  She did a number of visual tests on him including checking to see how he viewed colors.  (He is colorblind.)  After testing and collecting information, we went to a different room.

The next series of tests was looking at his peripheral (sp) vision.  He had to  press a buzzer whenever he saw the light.  It didn't look good from my perspective.  The doctor told me later that this test was worthless in terms of information as she could see in her tests that his vision was better than it showed up in this test.   That was good to hear.  All I could think was that he had already lost some of his vision. 

Next came the drops.  It was awful.  He screamed and cried.  I had to help hold him down while he was on my lap.  He was distraught over this.  :-( 

We waited for the drops to take effect and then were back to see the dr.  She looked at his eyes and asked if he had had the drops.  His eyes weren't dilated.  She had to do the drops again.  :-(  Again, not fun!  More waiting.  Looking at his eyes some more.

Another room for testing.  I'm not even sure what this machine was doing.  Some sort of imaging.  He was looking at a blinking or moving green light.  He had to be still.  He is never still unless he is sleeping.  It was hard too.  After trying for awhile, the technician brought in someone else to take the pictures. 

One more room for the last of the tests.  In this one, she took a picture of his optic nerve.  He screamed when the light went off.  It hurt him.  I know it makes no sense to other people his extreme sensitivities to things.  It is real though and it makes me hurt for him.  And then he had to do this a second time.  He was again very upset and difficult to manage. 

Back again to meet with the doctor.  She pulled up the images of his optic nerve.  There is no clearly defined area (as there should be).  Also the nerves running to the nerve were showing signs of pressure.  She showed me a normal eye so that I could see the difference.  She said that this indicated that there was pressure behind the eye.  What is behind the eye to cause pressure?  The brain. 

She said that the next step was another MRI (for a different series of scans than had been done last year).  She said that she felt comfortable that there are no tumors!  Praise God.  She said this was based on last year's MRI.  I wasn't sure if things could change in a year, but I'll just accept this as good news.  She wants to find out what is causing the pressure on his eyes.

The next words just made my eyes tear up.  She said that she also wanted Daniel to have a spinal tap.  I know she could read my face and I didn't know what to say.  Of course I want to know if there is something there, but all I could think of was the pain that I know this causes people with typical sensory needs and then to multiply what that would be for our sweet boy.

As we were talking about what could be causing the presseure and what each would mean for Daniel, the doctor said she wanted to do one more test.  It's after 5 at this point and we head back to her office.  Daniel is not cooperative at all.  I am not surprised.  It is a non-invasive test though basically just "massaging his eyelids" with a tool that helps her to look at his eye (looked like an ultrasound).  I offer an incentive for cooperating and we convince him that he can do this while sitting on my lap.  As she scans his eyes, she sees calcification behind one of the eyes. 

She said this could be the cause of the pressure.  She said that instead of going forward with the MRI and spinal tap, that we'll just wait 3-4 months and come back for a repeat of the tests.  While I don't like the idea of another day like this, I'll take it over the other options!  If things stay the same, there may be no action needed at that time.  It does sound like this is something that will continue to be monitored though over his life. 

If we see changes - in vision or having headaches, this could indicate other problems.  The only risk she told me of related to this calcification was a type of stroke.  She also said it was a fairly common type of stroke and shouldn't be a worry.  (It seemed like this was something in adulthood too.) 

I know this seems cut and dried.  I'm worn-out.  Daniel fell asleep before we were a few miles from Duke.  It was a very draining day for both of us. 

In the midst of it all, I find that I have reason to be thankful.  I'm thankful that there is no cause to believe there is a tumor.  I'm thankful that he will not have to have a spinal tap.  I'm thankful that for now, we can just wait and see how things progress.  I'm thankful that he has no other symptoms causing concern like headaches or vision issues.  I'm thankful for an incredibly kind doctor and staff.  VERY kind and compassionate!  I'm thankful we didnt have to wait a month for answers!  I wish I had all of this in writing.  I wonder if I'm forgetting something or mixing things up.  It's a lot to take in.  She did give me a number and said I could call if I had questions. 

I'm thankful for our little boy.  I'm thankful for all he adds to our days and our lives.  While we don't have all the answers, things for now look pretty good.  We'll just wait and see how things look in 3-4 months and try not to worry about it until then. 

Thank you for praying for us.  It means a lot to all of us. 

With love

Leslie