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.

Friday, October 1, 2010

New Changes Around The Corner

We are going to have some changes happening as far as therapy goes.  Our awesome PT, Carri, said that she thought it was time to move to OT.  She had talked with an OT, Ellen, at our local Children's Hospital.  Carri said that Ellen had a lot of experience with BPI.  So we had our evaluation with Ellen last week.  We really like her.  She asked a lot of questions about Jadon and worked with him to see what he could do.  I had warned her on the phone that he has not been real cooperative with therapy lately.  I guess it is that whole toddler independence thing.  I have been having issues working with him at home.  He used to let me stretch him out right when he woke up.  He would sit on my lap and drink his milk and I would work with him.  Now he does not even want me doing that.  However, this is not Ellen's first time with a stubborn toddler.  She put him in a chair with a seat belt and a tray to keep him in one place so she could do some activities with him.  He was willing play along for the first few activities but it was not long before he got mad that he was being kept in one place.  She was really patient with him.  I liked that.  I don't mind if he gets mad.  He has a lot of hard work ahead of him.  We really need to get that hand working. 

The thing that makes him the most mad is making him use his BPI hand.  He hates it!  I think he just wants to forget about it!  But Ellen did get him to move a block from the tray to the cup with that hand, but oh was he mad!!  She did some coloring, puzzles, bubbles (something in every good therapist bag of tricks), and stickers with him. 

After she was done evaluation where he is at we discussed some things she might be trying with him in the future.  We talked about e-stim but she does not think at this time it would be a good thing.  He is very active and really has to sit and be cooperative for long periods of time to do the e-stim.  Plus he likes to remove his brace etc...and she says if he tries to remove the electrodes he will get a little shock.  So not sure if/when we will be doing that. 

We also talked about immobilizing the good arm to force him to use the bad arm.  She said that sometimes they put the good arm in a cast for as long as a couple months.  She said she did not think that would work right now for Jadon either.  He would be so frustrated.  But she did say that we may try immobilizing for shorter periods of time to see how that works.  We would use a type of soft cast we could remove if he was just miserable.

The last thing we talked about was something called Kinesio tape.  I hope I spelled that right.  It is a tape that position certain joints where the therapist would like them to be and it stays one for days at a time ideally.  She put a small piece of tape on Jadon's back before we left.  She wanted us to keep it on for 24 hrs. to make sure he was not allergic to it before we do some of that therapy.  She will be teaching me how to reapply what she puts on him in case he gets it off.  I am thinking I had better watch closely when she teaches me.  I can pretty much guarantee he will be trying to get it off.  Therapy was sooooo much easier when he was little!! 

So as you can see....we may have a bumpy and tough road ahead when it come to therapy.  Jadon has a lot of hard work ahead of him, but it will be worth it.  Someone remind me of this when he is a total grump because his good arm is immobilized please! 

Our next appointment with Dr. Kozin is on Nov. 5th.  Looking forward to getting input on how he things Jadon is progressing.  Jadons external rotation continues to be tight so I am interested to see what he thinks about that.  Wondering if more botox may perhaps be in our future. 

I continue to be contacted by others on the same journey!  I love hearing from you!  We all need to support each other as much as we can!  Keep sending me emails!! 

A pic of Jadon with Ms. Carri, his PT, that he has seen since he was a week old.  We are going to miss her while we take a month break from PT to focus on OT.  This way the OT can see what is working on her end without any other influences. 

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