What We Have Been Up To

Our focus since returning from Philadelphia has been fine motor.  We discussed Jadon's possible tendon transfer  for his wrist in a year with our therapist and she feels that working on hand function is a top priority.  So the focus has been fine motor, fine motor, fine motor.

We have recently started a workbox system that seems to be working pretty well.  I say it is workbox time and Jadon goes over to see what surprises await him today.  We work in number order to help Jadon with learning to recognize his numbers.  There are six boxes that should take us about an hour to get through depending on the interest level in each activity.  If he is really into an activity we will not move on until he is ready so we don't always get through all six boxes. The workboxes are a combination of preschool learning activities and therapy activites.

Below is an example of one of the fine motor activities that I include in at least one of the above boxes each day.  I got these heart sticks from The Dollar Tree.  I thought they were perfect to put beads on. 

The Angry Birds Knock On Wood edition game was in one of the other boxes.  Jadon loves this game and has to use Righty to make the catapult work so it is excellent fun therapy!

On the suggestion of our awesome therapist we ordered these special self opening scissors for Righty to practice with.  He does not look forward to doing this but is getting better at it each time! 

 Here is a picture of the scissors we ordered from this awesome website The Therapy Shoppe along with some cool tweezers and grabbers for Righty.  This is a great website for specialty toys for any skill you are working on!

Jadon cut all three blue squares in the picture above with Righy.  MAJOR accomplishment!  So proud of this boy!

Here is a video of Jadon using Righty to take beads off of the stick after he was finished.  We do what seem like little things like this each day hoping that they all add up in the end!



Kiana

1 Year Check Up in Philadelphia

I can't believe a year went by that fast but here we are back in Philadelphia for Jadon's 1 yr check up with Dr. Kozin.  Our appointment was on Wednesday so we hit the road on Monday morning.  We stopped for the night in Washington, PA and stayed at the Marriot Springhill Suites where Jadon insisted on hauling in his own bag WITHOUT any help.  Since he had his hands full the Lovies had to ride in the pocket on the front.

We got up bright and early Tuesday morning to continue on our journey.  We wanted to have enough time for a little pit stop at ZooAmerica in Hershey, PA for some fun on our way.  We always try to include some fun in our trip out.  We really enjoyed the zoo.  It was all North American wildlife and we really liked how their enclosures were set up.  The best part was that we got in free with our Miller Park Zoo passes!  We also ate at a Red Robin for the first time in Hershey.  YUM!!

Jadon showing off his wingspan.

After our nice break in Hershey we continued on to Philadelphia to check into our favorite home away from home The Ronald McDonald House. Jadon remembered right away that we always take his picture with Ronald McDonald and insisted on doing that first thing.  Then he wanted to go play with the trains.  He always remembers the trains.

Wednesday was appointment day but we did not have to be at Shriner's to see Dr. Kozin until 2 pm. After sleeping in and relaxing for most of the morning we decided to go check out Bobby's Flay's Burger Palace. Sounded delicious and it was! Definitely one of the best burgers I have ever had and the sweet potato fries were delicious.

Jadon with his burger.

My delicious Philadelphia burger that had hot peppers, onions, and provolone cheese on it. I also added one of the flavored ketchups that were one the table to it. I chose the chipolte ketchup.

After we ate lunch it was time to head to Shriner's for Jadon's appointment. Jadon was a really good boy for Dr. Kozin again this time. When he was little he really gave everyone a hard time during these appointments but the last two times he has been very happy and entertaining.

Dr. Kozin says that we need to continue to work on getting him to reach in and touch his belly button. That continues to be an issue. The therapist asked if we had ever used a "belly belt" which is something they make out of the material the therapist commonly use for straps. Things often stick to it so it is a good thing to make a belt out of that wraps around Jadon's midsection and then we stick things to it, and have him try to reach in and grab them. We told the therapist we do actually have one of those. She said to continue to use that so now I am trying to think up some fun games we can play to keep it interesting.

We also need to continue to work on anything that will build more hand strength. Dr. Kozin said that when we come back out next fall we will probably get Jadon's tendon transfer for the wrist scheduled.  He needs his hand to be really strong for that. 

Dr. Kozin also noticed that Jadon can't straighten his elbow out. I also explained that even during stretching I have trouble getting it straightened out. Since he holds his arm bent at the elbow most of the time during the day Dr. Kozin said we need to get him a brace to wear while he sleeps to keep it in a straight position so those muscles can stretch. Dr. Kozin had the therapists measure him for one. They are going to order it and send it to us. Our therapist will have to finish fitting it for Jadon and also make it fit over the night wrist brace he already wears to keep his wrist in a neutral position over night.

We have come home with things to work on in the next year and I know it will go by so fast so we had better getting to doing those things!!! We are now home safe and sound. We left for home Thursday morning at 5:30 home time and walked in the door of our house at 11:20pm. Ugh! Long trip but Jadon was so good and it was really nice to just be home!

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!!