Here's the Ft. Worth Info:
Miles hip is still looking great. It's still in place. Now Miles only has to wear his brace at night. That's good news. He still can't be in certain positions or use the standing frame, but other than that it's looking nice. The hip will take about a year to be set in place so we still need to be a little careful.
The Ortho doctor sent us to another office to get his brace adjusted because he has some bruising and calluses at the end of his spine because of the brace. I thought the adjustments that were made yesterday were going to be great, but this morning he woke up with terrible spots on his back from the padding that they placed in the brace. Christy and I ripped out the padding this morning. Hours later the sore spots were still on him from the pads. So, that didn't work.
We will go back to see him in 4 months to check his hip again. He plans on Miles using that hip brace for the next couple of years.
Later yesterday afternoon Miles had an appointment with his neurologist. He increased his seizure medication to two capsules two times a day. He was not encouraging about Miles' body tone at all. He was talking about how advanced his tightness in his muscles are. In two weeks Dr. Marks scheduled for us to go back to Ft. Worth for Miles to have as much Botox as he can give him at one time. He will have Botox injections in his neck, shoulders, pecks, biceps and hands. The Botox will help to loosen up his muscles. This will work for about 3 months and then he will have to go back again for another round. It sounds terrible for him to get shots all over his body, but I'm actually thrilled that they are going to do this. The therapist and Dr. Marks is afraid that Miles will pull his shoulder out of socket if something isn't done soon. His shoulders are up to his ears day and night. It has to be uncomfortable. I will be glad when he gets this done. It will be a relief for him. We should be able to see a difference within a week after the shots.
Dr. Marks really wasn't encouraging about Miles body tone. Dystonia for those medical people out there. He was basically saying that Miles tone was the worse case scenario. The thing is that when he was saying all those things (for the first time) I just didn't feel like what he was saying was the truth for Miles. Of course I can look at Miles and see how tight his muscles are and I know that Dr. Marks knows what he's talking about. I just mean that I don't think that this will be Miles issues forever. I didn't get upset yesterday or today about the things he had to say about Miles. I just listened and believed the best for Miles. It felt good.
I'm going to continue to give him the recommended medication and I'm going to continue to take him to the best doctors available to us, and I'm going to continue to take care of all his needs, but at the same time I'm going to hang on to the fact that Miles Wilson will be totally restored in Jesus' name! Then I will take him back to those same wonderful doctors and show them what the Lord has done.