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.

Wednesday, February 26, 2014

Jadon is 5 today!

Today is Jadon's 5th birthday!  I can't believe he is five already!  Time is flying by!  He has changed just a little bit!  LOL!

At the end of January we made our trip back to Philadelphia for Jadon's post op check up and three days of therapy with the therapist out there.  We learned that they took tendons from his ring finger and his middle finger.  We forgot to ask when we were there for surgery which ones they ended up taking.  We learned a whole new set of exercises to get the wrist strong.  Jadon is not allowed to put his wrist into flexion for 12 weeks post op and he is also not allowed to weight bear for that same time period.  Jadon worked hard while we were out in Philadelphia and was pretty tired by the end of each day.  So were Mom and Dad....

We had two therapy sessions each day.  One in the morning then a break for an hour or two.  We would pick up lunch at the cafeteria or the little sandwich and wrap shop downstairs in between times.  Then if we had lunch and still had time to kill we would go let Jadon play in the play area at Shriners.  His Dad introduced him to air hockey one day.

Jadon's first therapy session was spent making him a brace to wear to protect his wrist at all times except when we are doing therapy.  Jadon did pretty well during our therapy sessions in Philadelphia but by the last day he was done...he was having a lot of swelling in his arm and fluid build up.  His skin was also very irritated.  His skin tends to be very sensitive on that side so I was thinking that the lotion I had used to help his dry skin (from being in a cast) was the cause of the irritation.  Dr. Kozin told us to discontinue use of the splint until the swelling and the irritation went down.  Dr. Kozin says he sees skin issues like that a lot on these kids and he was not too worried about it.  

On Wednesday after our final therapy session we started for home.  We made it all the way home on Thursday and Jadon's skin was not getting any better.  By Friday  I was starting to get concerned.  The swelling and the redness was not going away.  I pretty much made Jadon lay on the couch with his arm elevated the entire morning hoping that would help....

By Sunday I knew we had bigger issues.  Something had changed...these blisters started appearing all over his arm and they were oozing and gross.  We took him to Prompt Care to have a doctor take a look at it.  The doctor said it was definitely an infection and she was pretty sure it was impetigo.  She gave us an ointment to put on his arm and an oral antibiotic.  We began to see improvements quickly after that.  Everyday it looks better and better.  Within a week it was all cleared up!  Whew!

This is what is looked like Sunday.

This was day two...big difference!

Day three!  WOW!!  Almost healed!

By day three of treatment his arm was finally healed enough that I felt comfortable resuming our home therapy exercises.  We are supposed to go through all the exercises 3 times a day and do scar massage twice daily right now.  Scar massage to work out any adhesions or scar tissue that might delevelope and get in the way of his function.  Two of his scars from this surgery are feeling great and two still need a lot of work.  Yes...he has four incisions with this surgery. 

We were also able to get to his therapist here at home.  We were told by Dr. Kozin's therapists to see her 2 to 3 times per week.  It was up to her.  Since we have been home we have been taking him 2 times a week. 
We are over halfway through Jadon's recovery .  All his restrictions will be lifted at the end of March. Jadon's therapist wanted to see him work up to 30 degrees extension and he is at 50 degrees so she is pretty happy.  Jadon is doing so well that we get to go down to once a week beginning in March!  

We also discovered something new....one day in therapy our therapist had him do something and saw supination.  Something Jadon has NEVER had before!  I knew she had seen something surprising because she stared at his arm then she had him repeat what she had just asked him to do.  That time we all saw it!  I was so excited I wanted to cry!  This is huge!  We can't really work on supination too much until the restrictions are done.  We don't want to do anything that might jeopardize that tendon healing properly.  As soon was April come we are going to see if we can't get more supination and pronation.  At this point we have seen him maintain neutral (keep his arm turned so his thumb is up) and that is wonderful to see!  

For now we are just working hard ....getting our home therapy time in three times a day and scar massage twice a day.  Like a typical preschooler some days he is cooperative and some days he is not...

This particular day Jadon was bored with his exercises and ready to move on but check out that awesome wrist action!!  

We are going to keep working hard to get all the benefit we can from this surgery!  

Monday, January 6, 2014

Wrist Tendon Transfer

Last week we made our journey to Philadelphia for Jadon to have a wrist tendon transfer with Dr. Kozin.  It was quite an adventure due to winter weather conditions!  We left on New Years Day and knew that a big snow storm was heading for the eastern states.  We were crossing our fingers hoping we could beat it there.  We did but by only an hour!  It was a close call but thankfully, we managed to get into the Front & Erie Ronald McDonald House!  Here is a pic of Jadon with Ronald....we try to get one of him each time we stay!

When we woke up bright and early on Friday morning there was about 9 inches of snow on the ground.  Luckily, we only had to drive about 5 miles to the hospital!  Jadon was one of the first surgeries of the day.  We were a little nervous about how Jadon was going to react to leaving for surgery.  Thanks to the awesome staff at Shriner's there were no issues.  Jadon was relaxed and happy as usual.  It was pretty entertaining when they gave him Versed to make him relaxed so they could put him to sleep.  He was so loopy.  Laughing at nothing.  When the nurse took him from us they walked off singing "Wheels On The Bus" together.  Later, the nurse called me to tell me he was asleep and they were getting ready to start surgery, she also told me that when they got to the part; "The horn on the bus goes"...Jadon yelled "Honk, Honk, Honk" very loud.  She said it was adorable and everyone got a good laugh.

While we waited for Jadon to get out of surgery we got a chance to talk with another BPI family.  They were in the waiting area waiting for their son's turn to have surgery.  Their son was 15.  I always like to meet the older kids and see that they are happy, successful children.  Visiting with two families in the waiting room, made time fly by.  Before we knew it we were being called to come to the PACU.

Just like after his shoulder reduction/tendon transfer Jadon slept for several hours after surgery.  That anesthesia really drags him down!

Yes....his cast is orange.  His choice...well...his second choice.  His first choice was black but we told him it would be hard to sign a black cast so he chose orange!

After several hours of sleeping he finally decided to wake up!  He was happy and seemed to be in very little pain.  He was very, very hungry!  He had two apple juice cups first to make sure his tummy was okay then he proceeded to eat three singe serve packages of graham crackers, a cup of applesauce, a pkg. of cookies and some milk.  Before long it was dinner time.  He chowed down on some pizza!  By evening he was smiling and happy!
He loves showing off his cast!  That is why he is holding it up in a lot of the pictures.  He says that the cast makes him feel stronger.  Funny kid!

I was worried about how his night would go.  Was worried that pain might get worse and he would not be able to sleep well.  He had no issues and slept through the whole night...as well as you can when people come in every few hours to check vitals and change IV fluids.  In the morning he was ready for pancakes and to go home!

We found out that on the way home we would once again be dealing with a snow storm in the Midwest.  If we took two days to do the trip home we would most likely not be able to travel at all on the second day because of bad roads.  We decided to make the trip in one day and try to beat the snow storm to our house!  We got discharged at noon and hit the road right away.  We told Jadon that we were going to make short quick stops and would be eating in the car.  We had clear roads almost the entire way home!  We made the trip in a record time of 13 hrs.  We saw the first snow when we got off the interstate to drive the 20 miles home on rural roads.  We got so lucky!  We were worn out and tired but it was worth it!  Jadon's brother and sister waited up for us and were the first people to sign his cast!  He was very happy to see them.  His sister met him at the car and the first words out of his mouth were "I love you Shelby".  It is hard on all of us to be away on these trips!

Right now I am waiting for a phone call back from Linda, Dr. Kozin's nurse, to schedule our follow up appointment.  We have to go back in three weeks to get the cast off, and have a couple days of therapy at Shriner's with their therapists.

Monday, June 3, 2013

Getting Dressed All By Himself!

I have no idea where the time goes....It really does not seem like it has been almost three months since I posted!  Jeez!

We are keeping busy here.  Jadon is in heaven because we have a 4 yr. old boy coming to our house to play during the day for the summer.  This is the first time since Jadon has been born that I have watched a little boy the same age!  He is loving it!  This week we are doing a Space theme and today was A is for Astronaut.  We made space helmets to play in.  I love this pic of both arms raised up (Jadon is on the right)!

We have been working really hard the last few weeks on getting dressed independently.  Matt and the therapist kinda told me in their own ways (and nicely) that is was time for me to quit dressing him.  After all he is 4, he will be going to school in a year, and I will not be there to help him.  It was one of those things that was just part of our routine, and I did not really even stop to think about how much I was helping him.  Well no more!  I started encouraging him to show me he could do it himself.  He had been able to do underwear and pants for awhile but shirts and socks were a struggle.  I am happy to announce that he can now do both by himself now!
Ok mom....I got this! 
 Over the head it goes!  Beautiful!
 And Righy is in!
 Success!  Jadon is showing you his super cool ninja move in this celebratory picture!  LOL!

And here are some pics of Jadon getting his socks on all by himself for the second time!

 Hooray!  He did it! 

Jadon is still struggling with the socks.  With such a weak grip in his hand it is not something that comes easy.  Some days he does it quick and other days he struggles.  Sometimes it depends on his mood also.  I am so proud of him though! 

In other news.....we will not be winning BPI parent of the year anytime soon.  Jadon's Benik wrist splint went MIA several weeks ago and I have torn the house apart looking for it.  The good news is that my house is not completely reorganized and clean....bad news....no splint.  I think we must have left it somewhere outside of the house.  Darn...gonna have to pay for a new one.  Blah!  

We are leaving for a vacation of camping and hiking in Yellowstone very soon.  Jadon has been asking everyday if today is the day we leave.  We watched a documentary on Yellowstone with him and he loved all the animals.  He also can't wait to sleep in a tent!  I will post pics when we return!

Tuesday, March 19, 2013

Using tweezers.

I just realized I forgot to post this video I took of Jadon working hard to pick up little erasers with tweezers and transfer them. He loves these alligator tweezers we got at The Therapy Shoppe.

Wednesday, February 13, 2013

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!


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!