L & K Update...better late than never.

It has been too long since my last blog.  I enjoy it and it is such an outlet for me.  Today's tidbits will entail the details of our journey with Lydia and Knox who are visually impaired.  Many of you know this journey well but right now we are in the thick of things again it just does my heart well to write.  So here goes...

Each year we see our Indy ophthalmologist twice per year for regular vision checks to ensure that neither of them have lost any vision.  On that front, so far so good.  In February and March we took both Lydia and Knox to see Dr. H at the University of Michigan Kellogg Eye Center.  He is a brilliant physician and retinal specialist.  His bedside manner is not always the best but he is a world-renown specialist.  For Lydia's visit, Dr. H still seemed a bit puzzled by the results of her testing and was hopeful that by seeing Knox, we could move in some direction toward genetic testing.  So far, she still presents with some sort of albinism, a cone dystrophy, has a malformed optic nerve, and macular scarring.  This combination has been quite puzzling to Dr. H.  These point in different directions and Dr. H was more convinced than ever that L has something that has never been discovered before.  He does seem confident that she will not go blind, however I find it tough that he has such confidence when he doesn't have any idea what she has.  We also recently discovered that one of Jason's relatives did go blind in his 40's.  Dr. H was very concerned about this and we are hopeful we can ascertain medical records to give to him for him to review.  After Knox's visit with Dr. H., he quickly decided to do broad spectrum genetic testing on Knox, Jason, and me in order to help diagnose our mysterious little love bugs.  His eyes look just like Lydia's upon exam and his ERG looks like hers too.  However, his vision is better than hers and he doesn't have nystagmus (eyes moving back and forth involuntarily) like Lydia does.  He also hasn't had some of the other pictures done of his eyes yet as he simply cannot comply due to his age.  The genetic testing includes 228 genes that cover all of the known retinal dystrophies and albinisms.  It is expensive but we are praying we can find some answers.  We have also submitted all sorts of paperwork to apply for our care in Michigan to be changed to in-network so that we don't spend a fortune each year to travel there.  The interpretation of the labs we sent will take 3-4 months of combing by a whole crew of Ph.D's.  Wow!  Humbled and grateful!  Please pray with us for some answers and for approval by our insurance company to pay for the testing.  :)

We are also in the midst of getting L & K assessed by IPS and First Steps, respectively, so that we can get our kids in the hands of experts on the functional side who will help us to keep them on target as they learn.  They seem so normal to us, but we often see signs of their visual impairments and just don't want to miss a thing.  Annie Hughes, Lydia's behavioral interventionist through Visually Impaired Preschool Services was such an asset to our learning and reminded me every time that we met that kids can often fool you for a long time and then hit some pretty big bumps in the road as they learn which can include quite a mountain of discouragement to overcome.  So, we have decided that a little extra effort right now may save us all quite a bit of heartache and headache in the future.  We are still considering the School for the Blind here in Indy for preschool for both Lydia and Knox so that we can learn as much we can with regard to their needs.

Overall, we are blessed beyond measure and see an immense amount of grace in every step of the way with our sweet peas.  Calvin, whose vision is spectacular, is really great at helping in vulnerable situations for L & K and jumps at the chance to do it without complaint.  He is very mindful and intuitive about their needs but by no means full of pity.  He expects greatness from them and so do we!  :)  God is doing mighty work here in our home!  He is making a way for each of us.  He stretches us and conforms us into His likeness.  We groan sometimes but so often remember His great kindness in all of it.  We are ever so grateful for the gifts he has given and a bit dumbfounded at times that he chose us to lead this growing family of ours!  What treasures and pointers to Christ!  Lydia and Knox are both so extremely determined and oblivious to their visual impairment that we don't fear any lack of determination in overcoming the obstacles ahead.  They are both adventurous, full of wonder, and as curious as they come!  I am so thankful for them and fully believe that God will use all of this for His glory and their good!


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