Tuesday, November 10, 2009

+1198 Vision and Learning

We are now entering a realm of David's care that I was hoping never to enter. It's becoming clear that the doctors at Stanford are only interested in medications and operations. They have very, very little interest in the whole child. Honestly, this was clear from David's first diagnosis when they wanted to rush into a bone marrow transplant without first understanding his symptoms. I just wish they took more of a wholistic approach.

Let me give an example. After David's doctors learned he had cataracts, they did nothing except shake their head in acknowledgement. They gave no advice to me, like no nutrition advice and no sunglasses advice. Do they not understand that the eyes need vitamin C and antioxidants?

So, by God's grace last night we had a vision therapist come to my homeschool group meeting. He spoke about vision and learning. I asked him about David's cataracts and previous brain hemorrhage. God opened a new door for me. David will eventually acquire blurry vision. This will effect his reading and learning. Also, he may have vision problems due to the brain hemorrhage. Things David can do so well today, will slowly deteriorate. The reading skills he acquires this year in Kindergarten will get harder, not easier like for most children. There is therapy that will help him to compensate for the everyday activities that will be more difficult to do. He could compensate on his own, like many people do when they have a disability, but that will lead to bad habits. It's best to develop good compensation skills.

This leads me on a new journey. My prayer is that God will hold our hands, continue to open doors, and strengthen David in every possible way. Thank you for your prayers.

-Aimee and especially David


Errica said...

I wish I had something wise or useful to say. Just know that my good thoughts and love are always with you.

Peter Olson said...

Prayers for David and you
Keep pressing for those answers.
God's peace to you.

Olismum said...

Aimee - I wish I could take it all away for you and David - hes such a trouper and he tolerates so much. As Davids story was my first brush with WAS he is in my thoughts a lot and your site actually helped me to 'diagnose' Oliver - the docs said hed not got it until I insisted on the test. Thanks so much for your strength and inspiration. Ive just started reading Shirley Nolans book 'A kiss through glass' which she wrote about Anthony, Im sure you know she started the Anthony Nolan Trust Bone Marrow Register to help Anthony and others like him. Anthony did not get his donor and lost his fight at aged 7 - fortunately many many others have found donors through Shirleys determination and strength - I feel you and her are out of the same mould. love to you all. xx

Paige said...

Aimee - I'm so glad to read in your last post that you'll be talking to NIH about David's GVHD, especially if the doctors he's been seeing are as you say. We're praying for all of you. May God grant you a miracle.

Lisa said...

Hi Aimee,
Thanks so much for contacting me on my blog. I hope you don't mind - I'm going to add you to my blogroll on my website (as that's how I keep up with the blogs I read) and I really want to keep reading about your David. He's an adorable, strong little man and I'm happy to "meet" you. You're in my prayers.