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Sue's Corner
May 24, 2000
The following is a recent update from our friends Greg and Kate Kremer:
To all who have been following our story with Roberto and Brenda...
On top of his physical limitations, Roberto has a disorder of some sort that binds up his left or right side occasionally. It keeps him from being able to work on his therapy with regularity. Working on this disorder was not part of our planned work with Roberto. We didn't even really know of it until he arrived. So we were unprepared with funds. But God does provide. We have received free care and testing with the University Medical and Dental Hospital in Newark. What a blessing.
Today we had a meeting with the head of pediatric neurology at UMDNJ. She ascertained, with the help of some video footage we shot last weekend, that Roberto does not have a seizure disorder akin to epilepsy. She is quite certain that he has a motor neuron disorder more like Parkinson's disease. These disorders are very rare in children so there are only two centers in this county that specialize in these diseases with children. One is in NYC and happens to be run by one of her best friends. Immediately upon viewing the video she picked up the phone and called him. As she put down the phone she called a nurse and had the video fedexed immediately to NYC. So now we are being passed from one of the foremost figures in children's seizure disorders to one of the foremost experts in the world in children's neuro-motor dysfunction. We are closing in on Roberto's problem and perhaps solution. Thanks be to God.
If there were an occasion to pray this would be it. There is actually a slight possibility that, if Roberto has a certain disease, he will walk and talk unassisted. Please pray that all goes well and that Roberto is given the gift of walking and talking.
On the homefront we have been working on some major things as well. Roberto has had some real problems with potty training. Brenda has tried everything she knows to get him to go and was beginning to wonder about his ability in this area. She was really downhearted. So we all put our heads together. We came up with... a potty seat so that Roberto does not have to fear that he will fall into the toilet! And we decided to begin trying to potty Tess at the same time. And we put up a chart with Roberto and Tess' name on it. They each get a star for every time they pee! All this in place, the next morning Roberto was sitting on the toilet and Tess walked in. She walked right over to him and put her arms around him and in her very knowing two year old voice said, " I will help you go potty Roberto."
I translated. Roberto peed! We all cheered! He has been peeing since. Seven stars yesterday, six today. He just beams when he goes. God really does answer prayers.
And there are lots of other things to work on. Roberto now has his own walker. When both his legs are functioning he is practicing. He also has a communication device, a little board with pictures. When he touches the picture it says a word or phrase. He is learning how to use it and we are designing the pictures and words to be useful for him. He is still going to physical, occupational and speech therapy every week. We are very busy and are doing well.
Love,
Kate and Greg.