Sunday, January 31, 2010
Monday, January 25, 2010
Devin had several tests on Friday and doctor appointments all day today at Mayo. The long and short of the results is that everything that we have not had to do so far with Devin, we are now having to do.
As you can see from the above video, while Devin is walking in just AFO's, he is becoming more twisted and using less muscle and more tendon to walk. We do have the longer braces for Devin with a strap at the top and that helps with his alignment but the ultimate goal is little or no bracing. Devin will have surgery on his lower legs within the next 6 months to hopefully correct some of this.
We had started a medication since our last appointments at Mayo (June/July) called Ditropan. The main purpose of this medication is to increase his bladder size by relaxing his bladder muscles. When we started that medication, we also started giving him Miralax on a regular basis to counter the constipation side effects. The test they performed on Friday showed little change in his bladders ability to hold urine, so they are increasing the amount of Ditropan. In order to prevent other complications, we also need to use a catheter to empty his bladder 4 times a day. This will also give an on-going indication of how well the Ditropan is working.
With all of these changes, Devin has been having constant movement of his bowels, so to address this we will begin to give him regular suppositories to clean him out. If that does not work, we will move on to an enema.
Many children with Spina Bifida have to use a catheter from birth to help prevent Kidney failure and because the bowel and bladder function is at the very end of the spinal cord, almost everyone affected by Spina Bifida requires both catheterization and a bowel program to function like their peers on a day to day basis. We knew from a very early point in time that this was the ultimate goal and were just holding off as long as we could. This all comes at a good time as we prepare to have Devin begin Pre-school in the fall.
Friday, January 8, 2010
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