Doing It All By Himself

 I woke up this morning to sounds in the kitchen (fridge opening and closing, utensil drawer opening, stuff clanging on the counter.  This is what I found when I got to the kitchen......

Jadon was peeling his own Cutie!  He had it almost done by the time I got out there and he finished it without my help.  This is something that does not come easy for Jadon since it requires the use of both hands.  He did a great job and I was very proud that he never asked for help!  He knew he could do it and he did!


Later in the day we were playing catch with a giant stuffed polar bear.  Jadon caught it in the air several times!  I was so excited!!  Two awesome Righty things in one day! 

Home Therapy Activities

Jadon sees his occupational therapist once a week but the rest of the time it is our job to make sure Righty is getting a workout.  I usually take ideas that my therapist has and bring incorporate them into our daily activities.  Recently she taped a cleaning cloth to Righty and they drew on the mirror with dry erase markers.  Then it was Righty's job to erase the pictures when they wanted to start over.   At one point she mentioned that there might be an auto mitt that might fit around the clamshell brace.  We checked it out and found these.

They fit around his clam shell perfectly!!!  I was so excited!  Jadon's Aunt got him an art easel for Christmas.  One side is a chalkboard and the other side is a dry erase board so we are ready for some home therapy fun! 

He is ready to go!  Look how high Righty is!

Time for some erasing!

Probably more erasing than you needed to see!  I can't get enough of it though!  He continues to make great progress.  The clamshell was made by our therapist so assist in some active weight bearing through the elbow and shoulder which is very important for strength building and bone growth.  The clamshell spreads out his fingers to give him a better base and assists the wrist since he has very little wrist function and his hand is very weak.  

Most of our home therapy these days is incorporated into everyday play.  He shows very little patience for sitting and stretching though we do sneak that in everyday too!  Even though we have been going to therapy since Jadon was just a couple days old I still learn so much every visit!!

Still Here and Working Hard

October 2011 out front of The Philadelphia (Front & Erie) Ronald McDonald House.

Wow! I can't believe how long it has been since I blogged! Time just keeps flying by! Our family has had a busy Fall! The biggest piece of news that I have to share is our latest trip to Philadelphia.  In October we went to see Dr. Kozin for a quick checkup.  Jadon was in a rare good mood during our appointment with Dr. Kozin so the team got to see just how far he has come since his shoulder reduction/tendon transfer surgery in March.

Dr. Kozin was very, very happy to see how great he is doing.  So happy that we do not have to go back for a whole YEAR!!  I was so excited to hear him say that!  We have made 9 trips in 2 1/2 years so I felt a huge relief at getting a little break from all of the travel. 

We did discuss our concerns about Jadon's internal rotation not coming back since surgery.  There was some mention of a possible future surgery to get some of that back but we are hoping if we work hard in therapy over the next year we can get some of that back.  We have been focusing on that area a lot lately and have already begun to see improvements. 

In the picture below he is enjoying a ride on a swing in therapy and working on internal rotation as he hangs on with both hands.  He swings over and grabs a toy with lefty while he hangs on tight with Righty.  It is a great workout for Righty.  Our therapist is so great about coming up with new activities to keep Jadon engaged during therapy. 

The older Jadon gets, the more challenges we face.  We have been working on getting dressed.  With the hand weakness and the current difficulty with internal rotation it is very hard for Jadon to put on pants especially.  This is also going to make potty training a bit difficult.  I am sure we will all figure it out.  We always do.. 

I am currently cooking up a plan to make an apron with a felt front on it for Jadon to wear.  Ms. Karen gave me this idea during an activity in therapy.  The plan is to create this apron so that felt objects will stick to it like they stick to a felt board.  Then we put objects on the apron for Jadon to reach in and get with Righty to work on internal rotation.  Once he gets them off the apron he can create a scene on a felt board with them.  Hoping to get that done soon.  Will takes pics and post it when it is done!

In case I don't get back here before the holidays have a Merry Christmas and a Happy New Year!

Still Here

Hi!  We are still here! I can't believe it has been months since I last posted here on Jadon's Journey!  Time just keeps flying and we had a busy and eventful summer.  Jadon has made huge improvements in mobility since he had his tendon transfer/shoulder reduction in March.  He worked hard in therapy all summer long.  Some of his therapy was in the pool over the summer.  He really enjoyed that.

We went from therapy two days a week to once a week a little over a month ago.  We continue to work hard at home to encourage the use of both hands in activities.  He is getting better and better about using Righty on his own without any prompting from us.

He is getting so big!  How did he get to be so big!  We working on getting Jadon to dress himself independently right now.  He can get his own pants on but shirts are a little more of a challenge.  Even though he made huge gains after surgery still had trouble with certain movements.  He has trouble with internal rotation which makes reaching in towards his body to hold a zipper or button with one hand and close it with the other difficult.  I am hoping with more practice that dressing will get easier.

We have also been working on weight bearing.  For a long time after surgery this was something he did not like to do.  He really put up a fuss about any type of weight bearing but now is much more tolerable  of it.  I even catch him doing it while playing on the floor every so often.  He is very comfortable with weight bearing on his elbow but still struggles with bearing weight on his hand/wrist, supporting his weight with the shoulder.  If only we could get that darn wrist to do something!!!!

Now that summer is over we are back to a more structured routine.  In "tot school" we are working on learning how to use scissors.  This is a great activity for Righty to help with.  Righty holds the paper while lefty cuts.
 

Another great activity that gets both hands involved it playdoh.  Jadon LOVES playdoh!  We make our own and he will spend hours playing with it.

Over the weekend at a garage sale I found these plastic relish trays for a quarter.  They have actually been on my wish list of Tot School items for sorting.  Today we sorted mini porcupine balls by color using the trays.  He is showing off how Righty can hold them even without his Benik splint on!

Well....it has been so long since we have updated you that I am sure I left out tons of stuff!  I will do better!

Constraint Therapy

Jadon continues to make great progress post shoulder reduction and tendon transfer surgery.  For the last four weeks we have been doing constraint therapy.  Our therapist, Karen, made a cast for lefty to wear.  It was cut in half and fitted with velcro straps so that we could take it off during sleeping hours.  If he is awake he is supposed to have it on though. 

This was the day the cast was made.  It is not cut in half yet.  Take note of how clean it is in this pic!  It looks nothing like that now!  LOL!

 Mealtimes are the biggest struggle for us during this session of constraint therapy.  Jadon does not have the ability to supinate (rotate his hand/upper arm in towards his mouth once he gets the hand to his mouth) so we have to assist him with that part.  That makes for some long meal times but we are being persistent!  Just the fact that he can now get his hand up to his mouth is huge!  He did not have that ability before surgery. 

 Ms. Karen has been trying a lot of fun things with Jadon during therapy now that he has all this new ability.  One day Karen taped paper underneath a table and had him lay on a bean bag chair.  Then she gave him paint brushes that fit on his fingers!  He had a blast painting this way!

 Lefty still gets in there and helps even though he is in the cast.  In the pic below Jadon is using his casted left hand to help Righty get the strawberry all the way in his mouth.  Jadon loves picking strawberries out of our strawberry patch.  This is the first good year for our strawberries and none of them have made it in the house.  They all get picked them immediately eaten right out there at the patch. 

 Love the progess that the pic below shows.  Jadon is trying to take the strawberry from his Daddy.  Again, not something that came very easily before our last surgery.

Weight bearing is very important for bone and joint strengthening so Karen has been focusing on that a lot lately.  Below Jadon is wearing a weight while doing his therapy activities.  We are also getting a lot of good weight bearing done in the pool.  Jadon just started doing pool therapy again.  He loves it!  We do pool therapy once a week and land therapy the other day of the week.  

 

Righty picked and brought Mommy a "flower" the other day.  I loved it!

 Take note of how dirty Jadon's cast is in the pic below.  He lives outside now that it is nice.  We can barely get him inside to eat meals.  He has also decided that he does not want to nap anymore.  This is not making Mommy very happy.  I took this pic on a 90 degree plus day in the middle of the afternoon when Jadon was supposed to be napping.  Judging by the look on his face he is no where  near ready for a nap.  Darn!  Oh and he also ditches shoes quite often.

 Just the other day in therapy Karen showed Jadon something new.  She thought this would be a good way to get some weight bearing and shoulder abduction in.  Jadon was not so sure of the little cart at first.  She tried to get him on it at the very beginning of therapy but he was not interested.  Just as therapy was about to be over he asked to ride on it.  I guess he just had to think about it for awhile. 

Once he got on it he loved it!  He was really mad when he had to get off of the cart because it was time to go home!!

I have to admit it looked like fun!

Wednesday (6/15) is our last day of constraint therapy!  Karen likes to do it in four week stretches.  I will be happy to be rid of that stinky, smelly cast!!  

I Did It!!

Sorry it has been while since I have posted an update!  We have been keeping pretty busy around our house!  Therapy three days a week alone does that!  Jadon has really been thriving and making huge progress!  Every two weeks his therapist does measurements to track his progress.  His range of motion continues to improve each week.   It is always exciting when we hear that he has 10 more degrees of shoulder flexion, 15 more degrees of shoulder abduction!  It is so exciting! 

You can see differences at home too.  He does more and more with either both hands or just Righty.  Righty is no longer on the sidelines!  I am so, so thankful we had this surgery done!  He was not capable of any of this before! 

Dying eggs at Easter with Daddy with two hands!

Playing with his new cars that the Easter Bunny brought him using both of this hands!

Jadon has also been doing great at therapy!  He is usually so happy to be there to play with Ms. Karen who is so good with him!  Therapy does not seem as frustrating for him now.   Here is Ms. Karen sneaking in some stretching on the platform swing.

Another favorite is "painting" with shaving cream on the tall mirror.

This week we are starting constraint therapy.  This means that Lefty will have a cast made to fit him.  It will be removable for sleeping etc.....and this will then force Jadon to try new things with Lefty.  Ms. Karen did a few tests at the beginning of this phase of therapy to have a starting point.  We will do the constraint therapy all waking hours for four weeks.  

Jadon stacked seven blocks with Righty!

Reaching high to put blocks in the cup!

Using a fork.

Turning pages one by one in a book!

Monday the cast was all equipped with straps and ready to go.  Jadon was not too happy once he realized this was not just something that was going to happen at therapy.  He is really frustrated so far but we are doing lots of one on one activities to keep his focus on what Righty CAN do.  Here we are doing some sitting activities.  Pushing buttons is great practice for his fingers.

And after just one day of practice he figured out how to get his fork to his mouth.  This is a fork that we have bent in and it has a piece of foam tube around it to help him grip better. I could watch him do that all day long!

After just having the cast home for barely 48 hours it has starting slipping down his arm and then he can slide it off.  Now when I put it one he spends the next five minutes getting it off.  We are going to therapy this afternoon so I am going to have to break it to Ms. Karen that I think we are going to have to make a new cast.  Little turkey!

Back In The Groove

It has been so nice to be home!  The end of last week went a little rough for Jadon.  He was ready to be done with therapy and be home.  Unfortunately on the way home he got sick and threw up multiple times before we got home.  Poor little man.  That was the last thing he needed after his rough post op week!

We got home and he seemed fine by Sunday morning.  That day we had a birthday party for our older son, Jacob, who was turning 13.  We were very excited to show everyone all the new things that Jadon could do with Righty.  Unfortunately Jadon was not having any part of that.  He refused to raise his arm.  I think he was just sick of all the attention Righty had been receiving.  

We had our first therapy session with our local therapist scheduled for Monday.  I was looking forward to working with our therapist who knows Jadon and works great with him.  Monday's therapy session was mostly just Matt and I telling her about the week prior, the new stuff he can do, restrictions.  measurements, and going over the stretches with us again.  She noticed that he flinched and started screaming as soon as her hand came to his shoulder.  She could tell it was just an automatic reaction because he was expecting something unpleasant next.  She suggested that we all just rest our hands on his shoulder at different times without doing anything else to get him used to us touching him and not associating it with something unpleasant.  She practiced this with him during that first session.  I was so happy with how patient, and considerate she was with Jadon.  I knew she would be but it was nice to see it in action.

When she wanted to check his scar she pretended to tickle him under the arm, then she would go in and massage.  If he fussed she would go back to tickling until he was laughing again...then back in for more scar massage.  Then she put him in his favorite chair to play with some toys while she did some stretches.  I feel like we really got a lot done the first day.

I was also working very hard at home to come up with times in our day to do stretches and make it a pleasant experience and not something that sent him into a complete fit.  Scar massage is done after tubby time in the evening.  I discovered that Jadon loves lotion.  I keep giving him squirts of lotion in his hand and while he is busy covering himself with lotion I am doing some scar massage and have even snuck in some stretches too!

We have been doing the other stretches or PROM (passive range of motion) while we are sitting and waking up in the morning and then again at night while he is drinking his bedtime tippy and watching a show with Mommy or Daddy.  We do our AROM or active range of motion (meaning encouraging Jadon to reach for things etc/movement on his own) all throughout the rest of the day.  At the beginning of the week we met a lot of resistance everytime we requested Righty to do something but as the week went on his positive attitude about all the new things he could do returned.

Wednesday's therapy session went well also.  Jadon was a little grumpy but Karen managed to keep the session positive.  When we got home Jadon was so crabby and clingy.  The next thing I knew he was throwing up again.  Ugh!  Within an hour he was fine.  Playing with toys and wanting to eat dinner with us.  He kept dinner down, but was really cuddly and clingy all evening.  The next morning he woke up crabby and sure enough.  Within about an hour of waking up he got sick again.  So today was just a Mommy and Jadon day.  I took him to the doctor just to make sure he did not have something like strep or an ear infection.  Dr. said that he probably had the flu over the weekend and his tummy was having trouble bouncing back.  So now Jadon is on the BRAT diet.

Tonight we got his stretches done without any fuss.  A first since post op!  I was so pleased.  Hoping any soreness and pain he might have felt during the stretches the first week is starting to go away!  He also continued to keep Righty plenty busy.  He has also figured out that if he does things he is not supposed to do with Righty instead of Lefty we have a hard time saying no.  Ugh!  He is too smart!

Here he is holding a "man" as he calls it with Righty so he can push a button on its back to make the arm punch.  The tongue is sticking out so you can tell he is really concentrating. 

Took this picture tonight while we were rocking before bedtime.  I got the camera because he was reaching back to touch my face and I wanted to capture that.  When he saw the camera he reached for the camera instead.  That is ok.  He could not have done that before surgery either!

Still can't get enough of all the new range that Jadon has from this surgery.  We are in therapy three days a week right now.  Makes for a lot of running around but it is worth it to keep getting Righty stronger!  Hoping Jadon feels great in the morning and is ready for his Friday session!