Monday, September 9, 2013

Vision and Growth

I apologize in advance for this post.  It was written quickly and may be a bit scattered.  I just couldn't wait to share the progress Kahsay has had.  This month we have seen unbelievable growth in Kahsay.  I wish I could say physically but sadly not in that area.  We have seen tremendous growth with his vision and gross motor.  A few weeks ago we had an appointment with Kahsay's pediatric ophthalmologist.  While we had seen some improvement with his vision we had no idea how much.  I recall leaving our first appointment with this specialist and his exact words to me were "He is doing good, but he has a long road ahead of him."  Leaving this appointment his exact words were "After surgery I would be confident to tell you I would no longer diagnose him legally blind."  My eyes widened and my heart jumped.  Never in a million years did I think he would tell us this at 19 months of age.  We were told his vision could improve up to age 3 but how much they couldn't predict.

He explained to us that because of the amount of progress he would like to do surgery on both the left and right eye muscles.  Kahsay's right eye has about half of the vision the left eye does.  He does believe this will be the case long term but, if he can align the right with the left he feels his fine motor with improve.  Currently Kahsay does not see a toy and try to grab it.  He will put his hand out if it makes noise.  We are trying to decipher if he does not see the toy or if it is a lack of coordination.  Surgery is scheduled for November 20. Previously his doctor also did not feel glasses would make a huge difference because he has cordical blindness.  He now feels with the improvement already and the surgery, glasses could make some additional improvement.  PRAISE GOD!!!!!  A beautiful example of an amazing miracle at the hands of our all powerful God.

On the subject of miracles.  If you have not seen this video of Kahsay sitting up it is a must see. Almost one year ago we were told Kahsay may never walk, talk, or feed himself.  This past week he learned to sit up all by himself.  The fact that he gets up on all fours and weight bears on his arms is HUGE.  In order to walk someday Kahsay needs to be able to weight bear.

Lastly, this past Friday we met with the endocrinologist.  This was our next step in trying to figure out why Kahsay will not gain weight or grow.  He ordered a variety of blood tests that were sent out to Mayo Clinic.  We should hear results within 10 to 14 days.  He did tell us he is fairly confident Kahsay shows all the signs of a growth hormone disorder.  Update to follow....

Thank you all who read this blog and pray for our family and Kahsay.  We know God hears your prayers and we can't thank you enough for storming the gates of heaven for our little man.