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.

Sunday, October 21, 2012

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!

Sunday, January 15, 2012

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! 

Wednesday, January 11, 2012

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!!