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.

Thursday, April 14, 2011

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!

Thursday, April 7, 2011

Almost There.....

Not much to report today.  Another day of therapy.  Today's therapy sessions were rough.  Jadon is just ready to be done with all of this I think.  I will be honest...me too.  It has been an exciting yet exhausting week.  There is a lot of stress for us right now related to restrictions and keeping him safe.  We have to keep him out of the brace and let him play like normal while still making sure he does not get into a situation where he falls on his arm, bears weight on his arm, or pushes his arm down below the level it has dropped as of now.  The stress of all of that added to the fact that Jadon is really not enjoying his therapy sessions is wearing on both Matt and I.  We are getting tired and just want to go home.  Don't get me wrong....Shriner's is wonderful, amazing, and has been so good to us....but it is not home.  It is not Ms. Karen (Jadon's therapist at home) who knows Jadon and how to get Jadon to do the work yet still have fun.  Those are the benefits of someone who works with your child week in and week out.

I feel like I can deal with everything else if I just get him back into his normal, familiar environment.  We all continue to struggle with the stretches.  He really, really does not like them.  I am praying that they get easier and he becomes more comfortable with them after a week or two goes by.  They have to be done and it is no fun for any of us when he cries and struggles during stretching time. 

I don't even have any pictures to show you today!  That is how worn down I am feeling!  Only two more session tomorrow.  Therapy tomorrow is at 9 and 11 in the morning.  After therapy we are going to eat lunch at Shriner's then go check out a children's museum called the Please Touch Museum.  We have been wanting to check it out.  A lot of other parents at the Ronald McDonald House have told us really great things about the museum.  We found out today that we can get free passes to the museum through the RMH!  Woohoo!  Bonus!  I will definitely take pictures when we are there to show you!  After we are done there we come back to pack and get ready to come home! 

Thanks again to everyone for all your love and support! 


Wednesday, April 6, 2011

A Good Report and Pet Therapy!

Good Evening Team Jadon!  Wanted to thank all of you for all the well wishes and thoughtful comments that you have been sending our way!  We really, really love that all of you are rooting for Jadon just as much as we are!

Jadon had a pretty good day today.  We started out our morning therapy session by checking in with Dr. Kozin.  Dr. Kozin had removed the cast on Monday morning but had not seen Jadon since to assess him.  Jadon showed off his new moves for Dr. Kozin smiling the whole time.  Dr. Kozin said that he thought Jadon seemed pretty happy with his surgery results and we had to agree.  The best news is that we don't have to come back for a check up for six months!!!  Woohoo!  Once we saw Dr. Kozin we went back to have Jadon's torso segment of his brace trimmed again.  It feels like we are spending all week getting his brace that he has to wear to sleep in just right.  Dr. Kozin said that he wants Jadon spending more time with the brace off then on.  Just during rambunctious periods of play and sleep.  Of course to me Jadon seems rambunctious all the time but I know it is not good for him to be wearing the brace a lot so I am just praying he does not get hurt when he is playing with it off.

Our afternoon therapy session went pretty well at the beginning but as soon as we started working on the stretches Jadon was done.  He does not care for those at all.  Hopefully these stretches get easier and easier over time.

After therapy we came back for a good nap.  We had to wake Jadon up for dinner time.  It was another wonderful home cooked meal as usual.  One of the many wonderful things about staying here at the RMH is the home cooked meals that volunteers bring in every evening.  It is so nice not to have to eat fast food the whole time we are gone!

After dinner it was pet therapy!  Our favorite!!  Today was the big doggies that we met the first time we were here for pet therapy.  Stella and Abner, two adorable Mastiff's that I love since my favorite movie is Turner and Hooch, and one sweet old boxer name Brutus.  They just lay there and let the kids love on them.  I think I enjoyed the dogs more than Jadon though!

Abner (only 7 months old).  He is in training to be a therapy dog.
Abner again.  Isn't he so cute!
Jadon saying goodbye to the "D's". 
Stella.  She is so sweet.

Now we are trying to get Jadon to relax and go to bed.  Another big day of therapy ahead of us tomorrow!

Oh one amazing thing from today.....my son touched my face with both hands at once today while I was holding him.  It was wonderful.  Such a simple thing most take for granted was heaven for a Mommy and her son today.  So thankful!

Tuesday, April 5, 2011

Working Hard

Hi all!  Today was a pretty good day.  We went to therapy at 9 am.  Jadon was cheerful going into the hospital.  Smiling and chatting up the registration girls, the lady we get our visitors pass from, and several other patients parents.  He even went into the therapy waiting area happily.  They have a train table with wooden track and trains to play with and  he LOVES choo choo's!  As soon as it was time to go back to the therapy room his attitude changed.  Mr. Grumpy came out!  He was not into letting Righty do anything today.

The therapist tried to show us a few stretches that they want us doing.  However, Jadon was not very cooperative with those.  He acted like they did not feel very good.  Wrestling away from the therapist everytime she touched him.  Made it a little hard for the therapist to show us what she wanted us to do.  So we made Jadon very unhappy for a few minutes while the therapist showed us how to do at least one of the stretches.  The therapist said that none of the kids that have this surgery like the stretches very much the first days but it should get easier to get them done by next week.

When the morning session was done we came back to the Ronald McDonald House to let Jadon relax for awhile.  We were hoping to get him to take a nap in between sessions but that did not happen. We did get him to relax and watch one of his Elmo's dvd's though.  Then we went downstairs to find something to eat for lunch and by the time we finished with that it was time to head back to Shriner's for the afternoon therapy session.

The afternoon therapy session went a little smoother than the morning one.  He was more willing to let Righty try to do a few things this afternoon.  He did a great job putting a puzzle together.  The therapist had him reaching up high for each piece to grab it.  He did a really good job with that one. Just like at home though after about 45 minutes he was done.  Once the afternoon session was done we came back to the RMH once again and this time Jadon was more than ready to take a nap.  Of course Mommy had to lay down with him and rub his head but he was out like a light pretty quick.  He slept from a little before 3 until 5.  Woke up crying but as soon as I picked him up he fell asleep in my lap for another half an hour. 

After he got up from his nap it was time to take the brace off for awhile.  The therapists said our goal for the evening was to have the brace off for at least three hours and get some of those stretches in also.  Since Jadon slept until 5:30 that meant we were going to have to let him play without the brace on for the rest of the evening.  We were told to just watch that the arm did not get fatigued.  As long as Jadon could still get his arm up to his head he was doing fine.  So every so often we asked Jadon to touch his head for us.  Here is a pic of him showing off!  LOL!  I can't get enough of this!

We made it through the entire three hours with out an incidents (like falling) tonight.  Let him play in the tubby for awhile.  Did a few of the stretches while he was in the tub.  Now he is in his jammies and ready for bed.  Watching a Sesame Street dvd then hopefully going to sleep so he is a happy boy for his morning session tomorrow!  We see Dr. Kozin in the morning so he can see his progress and give us permission to do some of those movements that have been restricted until now.  We are interested to see what he has to say.

Monday, April 4, 2011

The Most Amazing Day

Today has been the most amazing day!  Today was the big day for Jadon's cast to come off!  We were not sure what to expect.  Would we see new things right away?  We had heard other parents say that they did, but I did not want to get my hopes up too much.

Jadon had the appropriate shirt on.  I have been saving this shirt for cast removal day.  It says "Caution, Under Construction.  Please excuse my mess".  Then on the back is a warning label that says "Adult supervision required".  Dr. Kozin got a real kick out of this shirt.  Said it was perfect.
Dr. Kozin removed Jadon's cast.  He did not care much for this part.  It does not hurt but the saw is very loud and that scared Jadon.  Fortunately, Dr. Kozin was very fast.  Just cutting slits in the cast but leaving it on until we could go upstairs to see the therapists. 

Once we were upstairs in the therapy rooms they took the cast off but we had to continue to hold up Jadon's arm up.  They did not want it to fall rapidly and put stress on the tendon that is freshly healed.  So until they got his brace ready we had to hold up his arm.  It felt like it took forever for them to get his brace just the way they wanted it.  Jadon was getting a little impatient with us holding his arm and not letting him down.  Fortunately I was armed with plenty of suckers and fruit snacks to keep him happy. 
While waiting for parts of the brace to be adjusted the therapist stayed in the room with us and tried to get him to try a few things.  She took her badge and keys that Jadon had been interested in and held them above Jadon's head to try and get him to reach for them.  This is something we have never seen him do before but he did it!  I could not believe it.  He reach up over his head for the keys multiple times.  It was like watching a miracle.  I cried.  It was such a happy moment!   Then a little while later she got him to touch his head.  We kept clapping and cheering.  Jadon being the ham that he is loved every second of it. 

I found after taking the above pics that I was technically not supposed to take any pictures in therapy so I had to wait to capture the new movements until getting back to the Ronald McDonald House.

We went to a place called Reading Terminal Market for lunch.  Then we came back to the RMH for nap.  We all took a two hour nap.  After all that excitement we were worn out!

Pic of the Ronald McDonald House we stay at on Erie St.

Pic of Jadon in his new brace he has to wear for 8 weeks.  He will have to wear it when he is sleeping for 12 weeks it sounds like. 

After nap it was bathtime!  Time to get the stink off the boy!  He was happy as you can see from the picture below!

Then I got him to show me his new tricks with Righty so I could take some pictures.  We have never before seem him raise his arm to even shoulder height or out away from his body let alone this high!  Look at that!!

I am still trying to get him to reach up with both Lefty and Righy at the same time.  He is so used to them doing things separately.
Love, love, love this!

So that is what today was like!  We have a lot of restrictions right now.  We can't push his arm down.  Right now his arm does not go all the way down to his side.  Once the cast has been off longer and those muscles relax it will come down on its own.  We can't force it.  We also can't let him do any movements in towards his body either.  And no weight bearing.  For  today the brace was only supposed to be off for a half an hour but the therapists said that the goal is to have it more off than on by the end of the week. 

I did not mind keeping it on today.  I was so nervous about him doing something he was not supposed to be doing!  I can't wait to see what tomorrow brings!