Devin's at home!

Many medical terms have been mentioned along the way but ultimately much of it was not necessary. The doctor's lengthened the achilles tendon on Devin's left leg and found that it had a similar position to the right so they did a Tibia derotation on both legs. Often the tibia derotation is made with in incision that would be parallel to the floor (when standing) but because they were concerned that scar tissue would cause the foot to pull back inward, they made the incision the other direction. As I understand it, he will have 3 scars (2 on the left and one on the right), all a little over an inch long just above the anckle. The ultimate goal was to align both feet with the thigh bone when at rest.

Because they did not do anything with the foot bones, Devin will be non-weight bearing for 3 weeks and then be switched to lower leg casts, at which point he will be allowed to do whatever he wants.

Devin more pictures...

Sweet Little Devin

We went to see Devin at St. Mary's Hospital in Rochester, and he is doing really well.  He ate a good supper and was hanging out watching Barney over and over again.  He was pretty tired, but when we wheeled him down the hall (which he really liked) and into a play room, it had a mirror.   I think I caught him looking at himself and thinking "What are those things on my legs?".  Considering all he had been through - he was doing amazing!  Get Well Soon Devin!

Devin's Surgery Went Great!

Devin's surgery went great! It went better than expected, more details will follow!

Get Well Soon Devin!

Devin With Braces

This video gives you a very different look at Devin's progress. With his current Ankle Foot Orthotics and his height and weight, he tends to get twisted up. Hopefully after surgery and new Ankle Foot Orthotics Devin will be well on his way to walking. He does quite a bit of it while holding onto things now, but as you can see that is probably beginning to put a lot of strain on his knee joints.

Here is a good clip of Devin without his braces on. He actually has pretty good alignment on the right leg. The left foot was originally thought to be a club foot in ultrasounds before he was born and you can still see some of that. Devin will be having surgery on April 14th to correct some of the alignment issues he has in his left leg. I have been hoping to get medical notes before making this post so that I could post actual medical terminology of what exactly is going to be done but I have not received that yet.

Devin's favorite phrase right now is "I Did It!" I sure hope we can keep that spirit alive in him despite all the feedback he will get to the contrary.

Zach's Game 1/30/2010 at NIU

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.

A Blast from the Past!