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. 

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!

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.

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". 

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

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!

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!