Mayo Up-date!

We were at Mayo for doctor's appointment once again on Monday. As everyone, who has been to Mayo knows, it's not just the doctor that comes into the room. There are usually 2-3 students tagging along behind. Most of the day was follow-up of the tests that he had a couple of weeks ago. He saw a Urology, Neurology, and an Orthopedic doctor as well as a Physical Therapist, a Social Worker and the nurse who coordinates the Spina Bifida Clinic at Mayo.

The nurse describes Devin's bladder as a balloon that has not been blown up. Essentially, we have been give the orders to begin giving Devin a medication to relax his bladder muscles and along with that medication comes some over-heating side affects and constipation. The medication will help the muscles relax so that his bladder can begin to hold more liquid. Because of the constipation issues we will also start giving him a regular stool softener. Many children with Spina bifida require these medications a long with catheter procedures right at birth. At this point, they want to make sure there is not reflux into his kidneys (which the tests show looked good) and start planning for a program so that he can be dry down the road as he gets to school age.

The Orthopedic doctor is not recommending surgery on Devin's lower legs at this time but does think that in a year or 2 it will be necessary. If they do it too soon the issues can reoccur. While each doctor/therapist has a different idea of what will help Devin, we have all come to agree to use the KAFO's (which we have turned into convertibles AFO/KAFOs) while walking for Devin with the goal of building his Quads and eventually eliminating them. While the Orthopedic doctor does not think that twister straps will help untwist Devin's legs, we (the PT's and I) have decided to go ahead and order them as a tool to assist in strengthening his muscles. The hope is to get Devin as properly aligned as we can, so that we can help Devin build muscle. When his legs are twisted, he tends to use his ligaments instead of his muscles which stretches his ligaments and does not build muscle.

We won't need to go back to Mayo for about 6 months unless we have some medical issues.