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Saturday, October 15, 2011

The Latest On Luke


Everyone is so great about checking up on Luke and asking how he is.  I really love that so many people care about this little guy!  I thought I would share a little update about how he is doing medically.

Luke had an appointment in early September at Casey Eye.  I didn't blog about it at the time because I felt I had been writing so much about Casey Eye that we all just needed a break.  That day in September I had to go up there by myself (Mark was working the new schedule) and it is always anxiety inducing for me to go without a support person.  The news was good from the appointment.  Luke's latest visual field test was much better than the previous two.  The doctor did emphasize that his vision field tests were still NOT normal, but much better than what we saw earlier this year.  It still does not explain the million dollar question about what is causing these issues?  Luke still takes his eye drops faithfully each night, and we again got a referral to a specialist (but one that we have seen before).  We are going back to Legacy Emmanuel to the genetics department.  Off to see Dr. Antiodiotis.  The doctors are curious if there is a genetic connection between all of Luke's medical issues.  In fact, Dr. Edmunds (Luke's glaucoma doctor) said she began thinking of the genetic component after something I had said.  "ME", I said something that made a doctor think.  It really is true what they say "Mother's know their children best." 

Now Dr. Edmunds is talking about CAT scans and MRI's which I am NOT eager to jump on that boat with her.  Every doctor we encounter is always curious about Luke's microcephaly.  They are curious to take a look inside the head/brain.  CURIOSITY my friends is not a valid reason in my book to have Luke undergo another procedure.  Give me a medical issue/reason why they think it is necessary and we can talk, but for the sake of just looking....come on...I DON'T think so. And it is not like it will change his course of treatment. 

Luke got a new pair of blue glasses that he picked out all by himself.  He was so proud about it!  We are still using the iLs to help with the auditory processing issues and also attending OT weekly.  He is making great strides with his handwriting, and is doing well in school. 


Luke seems to be doing a bit better with Mark's weird schedule.  At times it is more difficult than at others.  I just keep reminding him that it won't be forever.  He is a big help around the house when he wants to be.  Other times....well...not so much.  He is a big help with Isabella and will mostly do what I ask of him.

Overall, I feel things are going well with Luke.  I have moved past the frantic feelings of needing to know everything that is wrong with him.   I have PEACE.  And even though I still don't have all of the answers to his eyes, I am daily "letting go" of my expectations and worries for the future and thanking God that Luke is doing so well, that he is an awesome reader, good speller and has made some friends at school this year.  

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