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.

Monday, March 22, 2010

Some New Changes

It has been awhile since the last post!  I apologize.  We have been busy, busy.  We are seeing more and more movement out of Jadon's arm.  I still do a double take when I see him walking with his elbow bent.  More often than not these days he holds it in a bent position.  We are now officially past our six months post op date.  They told us not to expect anything new before six months post op.  While we did began to see some changes earlier they were pretty much right on target. 

When I stretch Jadon out these days I am getting more and more resistance.  It just makes me want to jump for joy.  We have worked very hard all these months of healing to help him remember that he has a right arm so that when it does begin working he uses it.  We seemed to have accomplished that!  When Jadon plays he tucks toys under that arm to hold them so he can pick up something else.  So clever!  The first time I saw him do that I just wanted to burst with pride.  We keep trying to get a picture of him carrying something tucked under that arm but he is too fast!  He also will bend at the elbow and lift with his shoulder when you are putting his high chair tray on to get that arm up and out of the way.  I also see him holding it with his other hand more and more these days.  I don't know if that is because he is getting more feeling in his arm as well or not.  One day he fell asleep while eating his lunch.  I went to wipe peanut butter off  his BPI arm on the top part of the hand and forearm and he jumped!  I was amazed.  This time is so exciting.  It is like watching a miracle happen.  It pretty much is a miracle to get something from nothing!  These are the first times since Jadon arrived in our lives that we have seen his arm function at all!  Each day is a new day and we never know what we will see.

Because there is so much happening right now with his arm his therapist said it was time to go to weekly sessions to keep a good eye on things.  That way we can catch and correct any "bad habits" or problems that might start developing along with the new movements.  We are going to alternate water therapy with land therapy.  He had his first pool session two weeks ago.  He loves water and really enjoyed it.  I think he will enjoy it even more once he gets more comfortable with it.  I think he was a little confused the first session.   Why is my therapist here in a pool?  Why am I doing my therapy in water? 

We are adding a new therapist to our "team".  Jennifer will be taking over his water therapy.  Carri, our regular therapist, says that Jennifer specializes in peds. therapy in the pool and would be a great addition to our team.  Since we love Carri and trust her opinions that was all she needed to say.  We have not met her yet.  We were supposed to have pool therapy today but Jadon came down with RSV over the weekend and is still not feeling the best so we had to cancel. 

We have had other issues also.  In January Jadon began having what I called "pain episodes".  He will be fine one moment and the next moment he comes to you and wants to be held.  He begins moaning and acting uncomfortable.  Sometimes he will cry and squirm like the pains gets worse.  He won't let you put him down, does not want to drink or eat anything, and keeps his eyes closed.  Almost like he is in a zone trying to block things out.  These episodes last anywhere from an hour to several hours.  Then he will sleep for several hours and wake up fine.  At first we thought that maybe he was having nerve pain because of all the healing that is going on.  However, the episodes have become more frequent now.  They were a couple of weeks apart.  They have been weekly for about a month now.  About four of the nine episodes have also had vomiting.  I understand that extreme pain can make you vomit but twice he has vomited multiple times.  The episode he has last Tuesday lasted about 4 hours and he vomited four times.  We took him to the pediatrician the next day.  We just want to make sure there is nothing else going on.  They are going to begin ruling out things in the stomach/GI area.  He had an xray of the abdomen.  That was normal so they are going to do an Upper GI next.  A couple parents of children with Brachial Plexus injuring have shared with me that their children has pain episodes but not as frequent as Jadon's.  If anyone reads this and has had this experience I would love to hear your story.

Well, that is all for now!