Our Hope

By sharing our story and our experiences with this birth injury we will hopefully educate people. Knowledge is power. Our hope is that you will read this blog, share it with your friends, and they will share with their friends. Then in some small way we have prevented other families from having to go through what we have.

Saturday, November 6, 2010


We got home tonight from Philadelphia.  We are so glad to be home.  Jadon's appointment with Dr. Kozin was a little rough.  After being on the road for two days, being completely out of his routine, and not sleeping well Jadon was apparently not in the mood to have anyone mess with him.  The minute Dr. Kozin and his therapist walked into the room he was grumpy.  He would not let anyone mess with him.  He was not in the mood to play with any toys.

Dr. Kozin suggested that the therapist take him up to the therapy room where all the toys were to let him play.  They thought maybe they would be able to get him to cooperate if they gave him enough space.  Ha!  We tried all sorts of toys.  Each time the therapist even touched him he got mad.  I let him play with my cell phone to try to distract him and he still had a fit.  We tried candy even!  It was a little embarrassing for Matt and I.  He is such a sweet boy normally.  He was definitely not showing the good people at Shriners that!

It took a really long time but eventually between watching Jadon play from a distance and the few times we just forced him to cooperate she saw what she needed to evaluate.  The therapist said she was really impressed at how well Jadon incorporates "Righty" into his play.  She called Dr. Kozin to come up so we could talk about what she saw.  He sat and watched Jadon play for a little while also.  Both the therapist and Dr. Kozin feel that the elbow extension is definitely there.  Also that finger extension has improved since the last visit also.  The big issue at this point is Jadon's shoulder.  We discussed the fact that the shoulder area is always really tight and hard for us to stretch out.  We also mentioned that his external rotation is not very good.  Dr. Kozin examined Jadon's shoulder (against Jadon's will).  He said we needed to get an MRI to diagnose shoulder subluxation. When I looked up the definition of shoulder subluxation it is the separation of the humeral head from the glenoid cavity, resulting in strain on the soft tissues surrounding the shoulder joint.  Clear as mud right???

Here is how I understand it.....Basically because the arm has not been used the muscle/tendons are not growing equally.  The shoulder joint is also not developing properly, and because of this the shoulder is internally rotated.  This means that his shoulder is always turned in towards his body.  This really limits his use of his arm.   Dr. Kozin said "I think we are going to have to go in and do something about that shoulder.  It is really limiting all that he is capable of doing with that arm".   He said we will wait for the MRI results then he will call us and come up with a plan.

The next surgery is called an arthroscopic anterior capsular release.  From the sounds of things we go out for the surgery.  I am not sure if he is in a cast afterwards.  We come home for a couple of weeks then we go back out.  When we go back out we would stay for a full five days of therapy before we can come home again.  Yippee!!

Another interesting little bit of info we found out.  Jadon's Benik splint he has been wearing since August.....Yeah...Made for the wrong hand!!  Yup that is right!  We put it on Jadon so she could check to see if it was fitting right and she paused.  Then looked at us and said  "This is made wrong!".   There was a bar across the top.  It was supposed to be on the bottom to help position his wrist.  No harm was done but the splint was also not doing what it was supposed to do.  So she took the splint from us in case she had to send it back to the company in order to get us a new, correct one.  Ugh!

Hopefully I will be able to get the MRI scheduled on Monday and we can go from there!

Tuesday, November 2, 2010

Here We Go Again

Tomorrow morning we leave for Philadephia.  We will stop for the night in Ohio and visit with my cousin.  Then on Thursday we will head on into Philly.  Jadon's appointment with Dr. Kozin is on Friday at 8:45.  As usual I am very anxious to see what Dr. Kozin thinks of Jadon's progress.  I will be sure to update everyone after our appointment! 

I wanted to share some pictures from last weeks therapy session.  I love looking at these pics.  He was working so hard!  Ellen gave Jadon a box of stretchy toys and showed him how she wanted him to hold one end in his right hand and the other in his left and pull.  At first he was not cooperating then all of a sudden he decided to give it a try.  He probably continued to pull the little stretchy worms for about five minutes.  It probably helped that Daddy, Mommy, and Ellen were all cheering him on.  We were all so proud.  Ellen was so proud she let him take on of the worms home to show off his new trick!  Here are some pics I got!  He pulled to hard with Righty that Lefty had to let go!!  Mommy has since stocked up on some stretchy animals for home!  Each week I find myself on the hunt for something fun we saw at therapy!

Jadon also did another round of e-stim.  This time on his upper arm.  She was looking for elbow extension.  Unlike his lower arm, we could tell he felt that something was going on in his upper arm.  Each time the machine would start pulses he would react.  This time she was just getting him used to what it felt like so we did not do to many exercises while it was on.  We are going to work up to that. 
No therapy with Ellen this week since we are traveling.  We will miss her.  I will be back later in the week to let you know what Dr. Kozin had to say!