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, December 24, 2010

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! 

Saturday, November 6, 2010

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!

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!

Kiana

Wednesday, October 20, 2010

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!  

Thursday, October 7, 2010

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. 

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. 

Wednesday, August 25, 2010

Fun To Watch

Yikes!  It has been over a month since I have posted anything on Jadon's blog!  Ugh!  Things are the opposite over on our family blog.  If you hop over there you will see that I have been trying to post daily.  I want that blog book full when I print it! 

Jadon has been a busy boy over the last month.  Since I last posted we went on vacation.  This was Jadon's first camping trip.  He was not sure what to think of sleeping in a tent at first but soon got adjusted to it.  He loved being outdoors all the time.  While we were on vacation his Benik splint for his wrist came.  I need to get pics of it!!  Jadon actually asks to wear it.  It straightens his wrist and opens up his hand so I think it makes it easier for him to use his hand to hold things.  He used his hand alot.  He sticks toys in it so he can pick some up more and more.  Just yesterday  I noticed him walking around the sandbox carrying both a bucket and a shovel!  What is the big deal you say?  The bucket was in one arm and the shovel was in the opposite hand.  He was carrying around the bucket under his BPI arm and shoveling sand into it.  I love seeing progress like that!  It is the simple things that so many take for granted that are huge! 

 By the time I hussled over and got the camera ready he was no longer carrying it but you get the point.

Jadon is also getting very adventurous on the playground equipment.  Nothing stops this kid!!  I get a little nervous but I am trying not to be a crazy lady and let him explore and learn how to maneuver in this world.

Jadon trying to make his Momma crazy.


Jadon has also made huge progress with water therapy.  When we first started aqua therapy several months ago he hated it!  He would scream and get mad.  The therapist would have to stop and let me get him calmed down.  This would happen the whole session.  At the end of the hour he was probably only getting 15 minutes of therapy!  Then summer came along.  With summer came pools, lakes, baby pools, and sprinklers.  We came back from our vacation of camping and swimming in a lake and I told myself that if the next water therapy session did not go better we were calling it quits.  I mean really.....he was not getting anything out of it!  Of course the moment I have resolved to do this my son decides to turn the tables on me.  Last weeks water therapy session was a breeze.  He walked into the pool room happily, walked to the steps of the pool (wanted to get in himself of course), and into Carri's arms willingly.  They played happily for an hour!  It was fabulous.  It went so well we are doing water again this week.  It is so easy to stretch him out in the water.  Keep your fingers crossed this week goes as well!  

I will get back to you with those splint pics!  Sorry it has been so long!!

Kiana

Wednesday, July 14, 2010

Some Relief

Hello Everyone!  Jadon had surgery on Friday to repair two inguinal hernia's.  That has been the cause of all the pain he has been in since the end of December!!  We finally figured it out!!  He is doing great!  The surgery was done as outpatient so we went home later in the afternoon the day of surgery.  When we first got home he was tired and uncomfortable but by evening he was back to his normal self.  You would never know now (four days later) that he even had surgery!!  He is one tough kid.  Now that those nasty hernia's are gone I am sure will be seeing a different kid!  He was hurting so bad.  Just wish we had found the hernia sooner.

Here is a video we took of Jadon playing peek-a-boo later in the evening after surgery.  As you can see he seems pretty happy!



On the Brachial Plexus front we are trying a new time for therapy sessions.  We have been going to therapy in the late afternoon.  Jadon was not being very cooperative however.  He has been grumpy, and not wanting the therapist to do anything with him.  So we are trying early morning.  I have had good luck in the mornings with home therapy.  Yesterday we went to see Carri at 8.  Jadon was MUCH more cooperative.  He is still a lot more challenging than he used to be though.  He just wants to go, go, go while he is there.  He is a very inquisitive child, and is always exploring things.  That can be challenging when you are trying to get him to sit still to do stretches!  He was worn out when we came home from therapy yesterday.  He fell asleep in the truck on the way home and stayed asleep even when I put him down in the house!

Jadon worn out after therapy!!



Tuesday, June 8, 2010

Jadon's Check Up

Sorry I am so slow!  We survived, and are home from our lastest trip to Philadelphia.  Jadon saw Dr. Kozin on Friday morning.  Dr. Kozin is very happy with his progress.  Even pointed out to us that he is beginning to get some new functions we had not noticed.  Elbow extension is beginning to emerge.  Another function with is called pronation (rotating of lower arm so that palm is down) is also there.  So exciting! 

We expressed our concern to Dr. Kozin about how limp his wrist still is.  Jadon is able to bring the wrist inward toward his body but we have not seen any outward/upward motion yet.  Dr. Kozin will continue to watch that.  He did not seem happy with the wrist function either.  He wants Jadon to wear his "Superman" brace they made him last visit while he sleeps at night to stretch those muscles out to see if that helps.  He says that the finger flexors are very strong and it will take a lot for the wrist function to overpower that function.  We are remaining hopeful we will see improvement in that area.

The therapist measured him for a Benik splint to wear two different times a day for two hours at a time.  This will bring the wrist up but still allow him to opportunity to try and use his hand.  Perhaps even help him use his hand more.  They are going to order it for us.  It will go to Shriner's first where the therapist will fine tune it a little more and then she is going to mail it to us.  I will take a picture of it when it arrives to share with you. 

We go back in six months. 

Tuesday, June 1, 2010

On The Road Again

Wow! I can't believe how long it has been since I last posted! Yikes! Things have been so busy around here.

We are leaving tomorrow morning to start our journey to Philadelphia. Jadon has a check up at 9:30 on Friday morning with Dr. Kozin. I am very interested to see how he feels Jadon is progressing. I am growing impatient and at times anxious but I know that this is a slow process. I try to keep reminding myself of that, and stay positive. He has elbow. He is doing really great with bending at the elbow and when I stretch him out I feel how strong things are getting. We only see the wrist pull inward. No outward movement so the wrist just looks limp most of the time. I am a little concerned about that.

We continue to be concerned with his posture since he has started walking also. He does not walk straight and he does not lift his right leg as high as his left. So we plan to ask about these concerns also. Jadon tends to fall alot because of the combination of two issues....not having one arm to balance him, and the lopsided walking.

The weather here finally got nice enough for us to bust out Jadon's water table. I thought I would share some pictures of him playing. You can see how he bends at the elbow now.




We will update everyone after our appointment!


Tuesday, April 13, 2010

He Tries So Hard!

I captured video today of Jadon taking his rt. arm in his left hand and trying to push buttons with it.  He has been picking up that arm with his left one more and more lately but this is the first time I had seen him do something like that.  I could not believe it! He stood there long enough that I was actually able to get two different videos of him.  You will have to excuse the arguing kids in the background.  I was afraid if I told them to be quiet it would catch Jadon's attention and the moment would be gone.

Monday, April 5, 2010

One Smart Boy!

We are seeing more and more progress.  It happens slowly but every little improvement is encouraging to us.  One thing that really tickles me is when Jadon has something in his hand and wants to pick up something else.  He will tuck a toy or his precious lovey under his injured arm so he can pick up the other toy.  We were so impressed the first time we saw him do this.  What a smart boy!!  It has taken me forever to get a good picture to show you of Jadon doing this.  He is usually too quick.  Well, this morning I caught him as he was still waking up.  He has his lovey in his hand and I handed him his morning tippy of milk.  He tucked his lovey and took the tippy from me.  Since he was enjoying his version of the morning cup of coffee he was still for a few minutes so I snapped away!


I also thought I would share a pictures of our kids with their Easter eggs.  Jadon "helped".  :)  My husband called this picture "Three hams with eggs". 

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! 

Kiana

Friday, February 26, 2010

Jadon Is One Today!

I can't believe it has been a year since this wonderful, beautiful, amazing, strong, and brave child came into our family. We are so very thankful for the blessing of this amazing child. This year has been very busy, scary,and frustrating when it comes to learning about and dealing with this injury. It was overwhelming at first to do therapy among all the other things that are required when caring for an infant. All of that is routine now. I don't think even 10 months ago I could imagine myself saying that but it is true. Daily therapy and therapy appointments are just part of life now. We continue to pray and wait to see more miracles.

To celebrate Jadon's birthday I wanted to share with you some pictures from everyday life with Jadon. He just keeps smiling. Thank you to all of you who have been sharing this journey with us and sending up prayers of healing for Jadon. We appreciate you very much and hope you continue to follow our little Superman and he continues to show us what he is made of.

Happy Birthday my sweet boy!

Tuesday, January 26, 2010

Definately something happening!

That's what Carri, Jadon's physical therapist said. At least half of the bicep seems to be working. She wants to start him in the pool for water therapy, possibly in two weeks. We'll be able to see very small muscle movements easier in the pool. So exciting!

Sunday, January 24, 2010

More elbow grease?

During the past few days we've seen hints of Jadon's arm bending at the elbow! We'll have to wait for Tuesday's PT appointment so that we can confirm that it is truly bicept and not some other force (shoulder shrug, gravity, wishfull thinking, etc...). The next few months should prove to be exciting. It has been 4.5 months since surgery and the results are to start showing after 6 to 8 months.

Wednesday, January 20, 2010

One Step at a Time!

I just wanted to share Jadon's latest accomplishment. On Dec. 30th at the Ronald McDonald House Jadon took his first step. Since then he has been trying to take more and more steps. In the last week he has really been working hard on it. We will look over to see what he is doing and see him slowly working his way from the refrigerator to the table. Yesterday we got him to walk all the way across the living room. His brother and sister are having a lot of fun helping him walk. I don't know who is more excited in this video, Jadon or his siblings.

video