Wednesday, March 9, 2005

Well, we received lots of information today about Jonathan. First of all, we went to the vision screening. Jonathan did very well and lasted almost an hour before getting agitated with the situation. It was probably the longest session he has endured and he did a great job. Jonathan has ocular albinism (lack of pigmentation/red eyes) which is what causes the nastagmas (constant movement/scanning of his eyes), which he has had since he was born. He sees better out of his left eye because the optic nerve in his right eye is basically not developed. He is legally blind which does not mean totally blind just what they call "low vision". The doctor said that most of the things that are normally a problem, resulting from a brain injury, were okay, which leads her to believe that these vision issues were pre-existing. The therapist are going to work on getting Jonathan the tools he needs to be able to see better and we will proceed with seeing a low vision specialist at a later date. We had our Cares Conference today. Everyone was very positive and encouraged by Jonathan's rapid progress. Because he is doing so well, our new goal date to be released is April 13. This will be re-evaluated at our next Cares Conference in 2 weeks. Jonathan stood up again today without the standing frame and took more steps to get back into his chair. His therapist is talking about having him walk with the parallel bars soon. Jonathan got a new wheelchair today. It is one that he can move on his own. Our goal right now is for him to go from the bed to the door and back on his own. We also asked about taking Jonathan on an outing. Jonathan must go on a group outing with the Child Life Specialists and handle it adequately before they will allow us to take him out on our own. The goal is to try that with him in the next couple of weeks. While our Cares Conference was very positive, it was pretty tough to hear that we would be here another month. It makes it even more difficult when Jonathan looks so hopefully at us and asks, "Do I get to go home tomorrow?" Pray for us as we help him deal with this.
Praise the Lord for all the positive progress Jonathan has made over these last 5 weeks. He alone deserves the credit. Pray for Jonathan's continued progress. Pray for continued strengthening of his body to be able to walk and support himself. Pray for his agitation level, which is still present at times. Begin to pray for healing for his vision and continue to pray for healing of the diabetes. Pray that we will all trust God's perfect timing.

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