Newborn Birth Injuries: The Untold Story

Hi Everyone! I just got an email from Anise at Cameron's Smile about a great new video that the UBPN just released about Brachial Plexus Injury Awareness. PBS is airing this awesome video to help spread the word! I am so excited about this! One of the most frustrating things for me has been what to me feels like secretiveness about this injury. I feel this is because it IS caused by the hands that are supposed to above all do no harm. This tends to make people feel uncomfortable and awkward. I am hoping that maybe, just maybe this video and the help from PBS can open up a dialog. The medical community needs to make a change in protocol when it comes to delivering babies! Please, please pass this video on to all you know!!

Shoulder/Tendon Surgery Scheduled

I finally got Jadon's shoulder reduction/tendon transfer surgery scheduled out at Shriners.  Dr. Kozin will be doing Jadon's surgery on March 3rd.  We have to go in on the 2nd for the pre-op work so we will have to be out there by that Tuesday evening.  From what I understand Jadon will go home the following day (or at least back to the Ronald McDonald House) then we have to return in 4 weeks.  At that pre-op visit we will be in Philly for the entire week so that Jadon can have 5 days of physical therapy after his cast is removed. 

I am glad to have a date so we can start preparing ourselves for this big trip.  I am hoping after this surgery we will be done with surgeries for awhile! 

Update

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!

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!

Kiana

Kinesio Taping Success!!

The above picture is from yesterday.  Jadon has had this round of kinesio taping on since last Thursday.  That is a lot better than the couple of hours it was on the last time!  Of course it has been long sleeve weather here so I think that has helped.  Jadon had a really great therapy session last week.  He is catching on to what Ellen his new OT expects from him quickly.

Here they're cleaning up some animals they were playing with.  She makes him alternate between Lefty and Righty.

 He got to push this cylinder over theraputy to smoosh it.  They also hid bears in the theraputy and had to find them.  He really liked that a lot.

 I took pictures of his kinesio taping on Saturday because I could not believe it was still on.  The gash by his eye is from falling down on our sidewalk.  Ouch!

 Just ignore the yellow paint we got on the tape during our art activity on Friday.

Last night we got out the exercise ball.  It has not been out for home therapy in quite awhile.  We used it a lot when he was smaller.  At the last therapy session Ellen suggested we get it out again to help do those long stretches and to practice a little weight bearing.  He does a lot of weight bearing on his elbow when he plays but never does any from the hand on up.  Weight bearing is important because that is what stimulates bone growth.  Jadon enjoyed having the ball back out again.  He was giggling and laughing the whole time.  That is the kind of home therapy I like!

 When the tongue is out he is working hard!

 I love that face!

At Thurday's therapy session Ellen is going to have a new home therapy plan ready for me.  Looking forward to seeing what we got to work in!  Being sneaky is the name of the game these days.  If he even gets a hint that you are messing with that arm he walks away!  

Kinesio Taping

Jadon had his first official therapy session with his Occupation Therapist, Ellen today.  They got right to work on some of the things we had talked about at the evaluation.  Daddy took him to therapy today.  Matt said she really forces him to use that right hand (which makes him so mad).  If they are starting a new activity she gives him a couple choices and make him show her which one he wants using his right hand.  When it is time to clean up she had him alternate picking up toys using both hands. 

Matt took some pictures during therapy.  They are a little blurry because Jadon was moving and Matt was using his phone.  The brace he has on his for electronic stimulation.  Ellen wants him to get used to wearing it before they actually begin to use the machine.  He needs to keep it on for a certain amount of time and be somewhat cooperative.  That could be challenging.....

At the end of therapy Ellen applied some kinesio tape to Jadon's shoulder and wrist to keep them in a specific position she is looking for.  She did not show us how to reapply at this time.  She wanted to see how it went this first time.  Ideally the tape is supposed to stay one for a couple of days...but we are talking about the most stubborn toddler I have ever met.   It was still on when he got home to see me so that was a bonus....however by 5 pm he had the wrist portion removed.  The shoulder tape is still on.  Hoping we can keep that on for a couple more days.  He can't reach it as well.  I am hoping that the next time it will be cool enough to put long sleeves on him and maybe he won't notice it as much.  Here are some pics of it before he removed the wrist part. 

Got some good tips for making therapy fun and new again from another Brachial Plexus family tonight.  They used bath foam and bath paints in the tub and helped their child reach with the BPI arm to smear and she did not even notice she was being stretched.  They also said they had toys that only came out when it was therapy time so they were special.  One that really intrigued me was the platform swing they have in the house.  She said they put their little girl on it on her belly and she would swing and have to throw toys in a bucket using her BPI arm.  She is going to send pictures.  I will ask if I can share them on the blog. 

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.