We got an appointment at Mayo for our 2nd opinion on Devin's left hip! Bright and early on April 16th Devin is scheduled for an x-ray and an evaluation. At this point we have not necessarily decided to go to Mayo but just get an evaluation of what they think Devin needs or doesn't need. We are still waiting to get a call back from the Orthopedic Surgeon Devin was originally referred to.

We have also switched our primary Pediatrician to the Winona area so that getting referrals going forward is not an issue. The Pediatrician we had been going to at Gunderson retired and the doctor here in Winona seems to be just as knowledgeable if not more than the new Pediatrician we have been assigned at Gunderson.

Devin holds himself up while Dad helps him take steps.

Devin feeds his big brother!

The influence of our local WSU Boy's Basketball fans!

We know nothing more about the hip surgery as we are waiting for doctors to call us, but thought I would post Devin's latest progress. We did see a local Pediatrician today that may be able to speed up the 2nd opinion process through Mayo.


He is also walking with his walker. He holds his upper body as we move his feet.

19 months later... Before... and After

Amazing... 19 months later, and look at my teeth! Today Mom and I went over to Mankato and got my braces taken off - it went really fast! Was it worth it? Yes! I went through much pain and suffering and frustration - and a point when I just wanted them off - NOW!! I remember laying in my bed thinking - "I will never make it"... and here I am, towards the end of my journey. I really thought I would NEVER get them off - they had become a permanent part of me. The after picture is with my clear retainers in... and they are also an adjustment so far. I am not sure how much I like them. I am not supposed to eat or drink ANYTHING with them in except water - so a quick little drink here or there, or a little snack here or there, I will have to take them out if I do not want them stained. I need to wear my retainers 24-7 now, and I plan on wearing them for the rest of my life at night to keep this new smile. My first reaction when I looked in the mirror - "Those are my teeth?!!??"- they looked like someone else's. Another amazing coincidence - Leah also got hers off this week Monday also! Two of us in one week!
WHOO HOO!

Below is a picture of Devin ENJOYING a bath. We have had quite a struggle to get him to enjoy this process. This is the first time he has been in the water long enough to get wrinkly skin (Thanks to Allie the Entertainer!).
Devin had a Spina Bifida clinic yesterday. Some of his doctors have changed over and been replaced by others but all of the areas except neurosurgery were covered.

We have been very hopeful that all of the bracing and casting Devin had in his first year would help him for at least a few years, but yesterday we found out that Devin's left hip is shifting out of socket. Talk about taking the wind out of your sails! Most of the other children with spina bifida, that we know, have had this same hip surgery Dr. Wintersteen is recommending.

As I understand it, children's femur bones typically bend as they develop. The pressure of standing and/or walking cause the top of the femur bone to bend inwards just below the socket. This is not happening with Devin's left leg so they want to go in and cut and turn the bone (help mother nature). They would insert a temporary plate and it would require Devin to be in another Spica Cast for about 8 to 10 weeks.

We are looking for any information others might have on local (Rochester/Twin Cities) Pediatric Orthopedic doctors! Dr. Wintersteen had shoulder surgery and is out of commission for surgery until August. At this point she is recommending we go to Madison, WI for the surgery. We have decided to take this opportunity to look at other doctoring options for Devin.

Above is a picture of Devin jamming with Allie the Entertainer!

I thought you might also enjoy this clip of Cooper playing basketball!

A visit to Mankato

Mom and I went to Mankato today to see The Owatonna and Northfield Filzens. Amy and Jessie had a basketball tournament. It was awesome to see everyone! Leah, Amy, and Dar = Metal Mouths = $15,000. Leah gets her braces off March 16th, and Dar, probably by Easter! Whoo Hoo! Caramel, peanut brittle, ice cubes, here we come! :-)

For those of you concerned after my last post, here are some fresh pictures to ease your mind and reassure you that he is indeed overcoming the anxiety of the new braces. He was very willing to "ham it up" for the camera!

Happy 45th Birthday Dan!

Happy Valentine's Day!

(Pause blog music in the lower right side bar to listen to video audio)

A Picture tells a Thousand words!

Devin is not so excited about these new things (KAFO's...Knee, Ankle, Foot Orthotics) as they allow him quite a bit less mobility. Once he uses the proper muscles and figures out how to walk using them, the hope is that he will not need these any more. In the mean time we are to strap them onto him and try to help him get used to them a couple times a day. They seem rather bulky at the moment but as the months go forward and he overcomes these obstacles they too will just be part of a routine.

Devin has been very busy talking. He has begun saying "bye" to others and also uses the words "hi", "hey", "this", "that", "more","ba bye", "Dad", "Aaaaa" (Allie) and even repeated the name of a show today "Word World". "Mom" is a universal word that he uses for many different purposes directed at Mom. There are others that come and go. Last time we visited with Grandma and Dar, he really liked calling for Dar like everyone else does!

He babbles stories and points as he does. He has definite opinions about lots of things.

Today as the PT left our house after coming to give us some instruction for the KAFO's he said "Bye" for the first time before they actually got out the door. It was almost a directive, like he wanted them to leave because he was so disgusted with the KAFOs.

He also stood at the window and waved and smiled to Dad & Cooper (just like Allie) as Dad left for work (and Cooper for school) this morning.

Devin has continued to make progress in his ability to stand. As I had mentioned in the previous post Devin's Orthopedic doctor did order him to get KAFOs (Knee, Ankle, Foot Orthotics). She says we should alternate between the AFOs and the KAFOs but I am betting that Devin will figure out how to do everything in the KAFOs with some assistance and will be off walking in no time. The hope is to go back to just AFOs once he is walking well and develops the muscle strength to have his feet in proper alignment. The PT gave us a walker to start getting him used to that and he has stood at that several times today. Eventually we will actually be using it facing the opposite direction as he is in this photo. As you can see in the video, getting to things Cooper and Allie have is his main motivation!