Jadon's Journey

Doing It All By Himself

2012-01-15T19:09:00.000-06:00

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

2012-01-11T08:49:00.002-06:00

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

2011-12-04T21:33:00.000-06:00

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

2011-09-19T21:23:00.000-05:00

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

2011-06-12T14:00:00.000-05:00

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!!

2011-05-11T13:29:00.001-05:00

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

2011-04-14T23:03:00.000-05:00

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!

Almost There.....

2011-04-07T20:17:00.000-05:00

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!

Kiana

A Good Report and Pet Therapy!

2011-04-06T20:09:00.000-05:00

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!

Working Hard

2011-04-05T20:24:00.000-05:00

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.

The Most Amazing Day

2011-04-04T20:36:00.000-05:00

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!

Why Awareness Is SO Important

2011-03-14T14:27:00.003-05:00

The UBPN posted a link that caught my attention. Could not access the whole article but the abstract pretty much says it all. The article was about a study done tracking incidences of OBPI before shoulder dystocia training for maternity staff and incidences post shoulder dystocia training.

Conclusion

Shoulder dystocia training was associated with a lower incidence of OBPI and the incidence of OBPI in births complicated by shoulder dystocia.

Here is the link to the abstract: http://www.ajog.org/article/S0002-9378%2811%2900066-4/abstract . Unfortunately you have to join the American Journal of Obstetrics and Gynecology to view the whole thing....

This is why I tell everyone to TALK about this!! Talk to pregnant women you know! Pregnant women talk to your physicians! Everyone talk about this! Spread the word! Knowledge is POWER!!

So a child close to you does not have to go through THIS!

Or this!

Ok...off my soapbox for now.

Adjusting

2011-03-10T21:20:00.001-06:00

Things are returning to normal around. Well....as normal as life can be with a toddler in a full arm/torso cast anyway. Jadon is adjusting to the cast well. I even found him sleeping on his stomach last night and he is waking up less and less in the night now. Today is a week since surgery. I can't believe one week is done already! We return to Philly for cast removal and a week of therapy the week of April 4th-8th. They will do therapy twice a day for that week. Once in the morning and once after lunch. I have a feeling we are going to have one tired and cranky boy that week.

We are discovering that the 4T shirts I bought are fitting the best. The child size 5's I bought are too big but some 5T Garanimal shirts I picked up at Walmart are working out pretty good. So I would say that in most brands shirts two sizes too big are adequate.

In the pics below Jadon is enjoying a get well treat from his Great Aunt Marilyn. She sent him a get well card with a dollar in it. She said she heard his favorite treat was M &M's and to use this dollar to go and get some well deserved M&M's! So we did !

Shoulder/Tendon Surgery

2011-03-07T21:21:00.001-06:00

Sorry it took me so long to give everyone an update! We got home late Saturday night from Philadelphia and spent time with our older kids yesterday. Jadon's surgery went really well. I was really nervous about how he would handle being taken back for surgery. I was worried that as soon as we got back in the pre-op area that Jadon would figure out what was going on and start to have some anxiety. Fortunately he was in a great mood and we were able to distract him by being silly with him. It also helped immensely to have phenomenal nurses. They are always so good with him at Shriner's!

Jadon waiting for surgery.

The pre-op nurses had me give Jadon some medicine that was supposed to relax him and maybe even put him to sleep. It kinda had the opposite effect on Jadon however. It made him a little crazy and loopy. He was being silly and when the anesthesiologist came to take him back for surgery he did not even care. Off he went happily. I was so grateful there was no screaming, crying, or tears. Thank you Shriner's staff for not breaking this Momma's heart!

We got multiple updates from the or nurses then finally got the call we had been waiting for. The call to say we could come see our baby boy! As we were walking up to the PACU doors we could hear a child screaming. Matt said "oh, someone is not happy". When the nurse came and opened the doors to let us in we quickly realized the "someone" who was not happy was our child. Jadon came out of anesthesia spitting mad. He was going nuts! It tooks Matt and I several minutes to get him calmed down. Finally Matt got him to rest and relax a little. After they made sure that he was doing okay they moved him to a room. Once they transported him we were able to pick him up and hold him again. That is all he wanted. Just to be cuddled in our arms and sleep.

Resting in the crib for a little while after surgery. Spent most of the time in our arms though.

The nurses could not believe how much Jadon was resting. To me it seemed like he was just trying to make the world go away. He would wake up every once in awhile and realize that darn cast was still there, get mad, then just go back to sleep. We felt so bad for him.

Here Jadon is during one of his brief awake times in the hours after surgery. He got morphine twice after surgery then overnight they tried just ibuprofen to see how he did.

Finally in the evening Jadon went from this......

to this!

I was so happy to see that smile! We got him to drink some juice and he started to perk up a little. Talking to us and smiling. Eventually we got him to eat some crackers then a turkey sandwich. He was slowly starting to come around. Mommy stayed with Jadon overnight and we had a great night. He did not fuss much. Just wanted to sleep. He would sleep in my arms for awhile then sleep in the crib for awhile. About 6 in the morning he decided he was ready to be up for the day. So we watched cartoons and waited for Daddy to bring us breakfast. Later in the morning we got Jadon up to walk around. This was the first time being on his feet after surgery. The first time he took a few steps he said "woa, woa". It was so cute. It did not take him long to figure it out and before we knew it we were making lap around the unit getting some exercise.

The doctors came in around 8:30 to check on Jadon. They looked at the cast and decided there were a few places that needed to be trimmed because the cast was digging into his skin. So we went down to the fourth floor clinic and Dr. Kozin trimmed his cast to make it more comfortable. He did not care for that at all!

Once that was done we went back upstairs to wait for our carseat to be checked out and approved. Our carseat passed the test! Jadon fit in it with his cast with only a few adjustments! Woohoo! That was the last thing we had to do before we were discharged. We were back at the Ronald McDonald House by 10:30! Where Jadon rested, played, and watched Elmo for the rest of the day. Here he is sleeping with his Project Linus blanket that he got after surgery.

Here are some more pictures of Jadon's precious blanket. Just add this organization to my list of things I am so grateful for! Our life is so full of blessings! We were blessed to stay at the Ronald McDonald House of Philadelphia for the 7th time this stay. We are blessed to have such an amazing hospital like Shriners with their amazing doctors and nurses. Now we are blessed with comfort for our sweet boy in his time of need by Project Linus. Truly amazing.....

A few other blessings were sent our way during this trip. While staying at the Ronald McDonald House we met Mia, a sweet little girl just a few weeks older than Jadon who was back at Shriners for her week of rehab post shoulder surgery. It was really great to see her progress and to be able to talk to her Mom and Grandma about the surgery. It really helped calm our nerves and Jadon got to make a new friend. I would love to post a pic of Mia but I forgot to check with her Mommy to see if it was ok. If she emails me soon I will ask her if I can introduce Ms. Mia!

Our first night at the Ronald McDonald House a cute little doggy named Stella came to visit the children at RMH. We love when it is pet therapy night! Jadon and Mia LOVED playing with Stella.

We are home now and Jadon is doing well. We left for home on Saturday barely 48 hours after surgery. Jadon did not sleep well Friday night so we made the decision to drive straight through to home in one day instead of splitting it up into two days. Our thinking was that perhaps Jadon would rest better at home. We left Philadelphia around 7:30 am and arrived home around 9:30 in the evening. By the time we got unpacked, visited with my sister (our house/kid sitter) and the older kids, and did the bedtime routine it was 11 before we got Jadon to bed. He was asleep right away and slept through the whole night! He woke up around 8:30 the next morning. It was so wonderful!

Today (Monday) is the first day that I did not give Jadon any ibuprofen. He had a great day and has not been complaining about the cast. Seems to be getting used to it and the shirts we bought about 3 sizes too big seem to be working out very well. Overall, we are all adjusting and recovering. Linda from Shriners is supposed to call me sometime this week to set up our return visit in four weeks for cast removal, and five days of therapy.

Original Kinesio Blog

2011-02-22T15:20:00.003-06:00

I have been so busy I almost forgot to look for this! Here is the blog post over at the Original Kinesio Blog that has Jadon in it! I love the pic they used!!

Original Kinesio Blog

They contacted me about a month ago and said that they loved the blog. They asked if they could use some of the pics from Jadon's Journey that have Jadon using Kinesio tape therapy in some of their publications. I agreed! They told me they would include a link back to our blog. What a great way to continue to spread the word about Brachial Plexus injuries and educate people!

Lovin' This Reach!!

2011-02-17T17:10:00.002-06:00

We had a great therapy session today! Jadon has really been working hard in therapy lately! His therapist is so impressed with his progress. I got some great pictures today of Jadon reaching for the bubble wand.

I could look at these pictures all day long! I can't wait to see the progress he makes after his shoulder/tendon transfer surgery! Exciting things!

Therapy and Other Stuff

2011-02-13T21:58:00.001-06:00

Jadon has been doing great in therapy. His occupational therapist, Ellen, had her baby so she is on maternity leave. I was a little worried about how he would handle the transition to another new therapist but he did great. It really helped that Karen was there for several therapy sessions along with Ellen before she left for maternity leave. Jadon has been working really hard in therapy and his therapists are really good at making sure that there are new and fresh activities each week. Jadon's hand function continues to be pretty weak so we have been working on fine motor activites. Little peg puzzles and blocks are perfect. I keep praying that his hand continues to strengthen.

Jadon continues to use righty more and more without us reminding him which is wonderful. It is important the he continues to try and use righty for everything he possibly can. Here are some pictures from last weeks therapy session. He is chillin' in the bean bag chair and playing with legos.

Surgery time is closing in. Only a couple more weeks. I have clothes in about three different sizes. I am just not sure what is going to fit over the casts after surgery. It should be interesting packing things in his normal size for before surgery and then things in a couple different sizes for after surgery.

The closer is get the more and more anxious I get!

Preparations

2011-01-31T07:52:00.000-06:00

It is only four more weeks until we leave for Philadelphia for Jadon's shoulder/tendon surgery. I have not really purchased a lot of shirts yet. Just can't seem to decide what size is going to fit best. A friend of mine has given me a box of 4T shirts to use during that time. I originally thought that I was going to have to alter the shirts to get them to fit over the cast but I read that one mom was able to just stretch shirts that were about 3-4 sizes bigger than what the child normally wore over the casts. I am hoping that works! It would be nice to be able to use those clothes later when Jadon is actually that size.

Another thing we are realizing we are going to need to before we leave is a new car seat. I don't think the one we currently use is going to work because the sides curve in toward Jadon. With his arm in a cast out this his side we are going to need a seat that allows that. We are going to go check out car seats next weekend hopefully!

Grandma Cindy will be traveling with us on the next trip. She has commented that she would like to go and the more that Matt and I thought about the more we liked the idea of having some more hands to help us out. Especially after surgery.

Before we even go for surgery we have another BIG event. Jadon is turning two this month! I don't know where the time is going. He is growing up so fast! We are looking forward to this birthday party and hoping he can really have fun at this one. Last year he had one of his pain episodes right before the party started and was either miserable or asleep for the rest of the party. A few months later we would finally figure out what was causing the 4-6 hour pain episodes.....double inguinal hernia's!! Poor baby!!

Jadon has been doing really great in therapy. His correct Benik splint finally arrived and it really helps him with his hand function. His therapist also created a new splint for his elbow. We would like to see more elbow extension and this splint keeps it in that position and gives him some more function while he is wearing it. The therapist is very happy with the results she is seeing so far.

Here are a few pictures from one of Jadon's last therapy sessions where he got to use Righty to play the Lucky Ducks game!

Newborn Birth Injuries: The Untold Story

2011-01-06T09:23:00.000-06:00

Hi Everyone! I just got an email from Anise at Cameron's Smile about a great new video that the UBPN just released about Brachial Plexus Injury Awareness. PBS is airing this awesome video to help spread the word! I am so excited about this! One of the most frustrating things for me has been what to me feels like secretiveness about this injury. I feel this is because it IS caused by the hands that are supposed to above all do no harm. This tends to make people feel uncomfortable and awkward. I am hoping that maybe, just maybe this video and the help from PBS can open up a dialog. The medical community needs to make a change in protocol when it comes to delivering babies! Please, please pass this video on to all you know!!

Shoulder/Tendon Surgery Scheduled

2010-12-24T09:21:00.000-06:00

I finally got Jadon's shoulder reduction/tendon transfer surgery scheduled out at Shriners. Dr. Kozin will be doing Jadon's surgery on March 3rd. We have to go in on the 2nd for the pre-op work so we will have to be out there by that Tuesday evening. From what I understand Jadon will go home the following day (or at least back to the Ronald McDonald House) then we have to return in 4 weeks. At that pre-op visit we will be in Philly for the entire week so that Jadon can have 5 days of physical therapy after his cast is removed.

I am glad to have a date so we can start preparing ourselves for this big trip. I am hoping after this surgery we will be done with surgeries for awhile!

Update

2010-11-06T22:38:00.001-05:00

We got home tonight from Philadelphia. We are so glad to be home. Jadon's appointment with Dr. Kozin was a little rough. After being on the road for two days, being completely out of his routine, and not sleeping well Jadon was apparently not in the mood to have anyone mess with him. The minute Dr. Kozin and his therapist walked into the room he was grumpy. He would not let anyone mess with him. He was not in the mood to play with any toys.

Dr. Kozin suggested that the therapist take him up to the therapy room where all the toys were to let him play. They thought maybe they would be able to get him to cooperate if they gave him enough space. Ha! We tried all sorts of toys. Each time the therapist even touched him he got mad. I let him play with my cell phone to try to distract him and he still had a fit. We tried candy even! It was a little embarrassing for Matt and I. He is such a sweet boy normally. He was definitely not showing the good people at Shriners that!

It took a really long time but eventually between watching Jadon play from a distance and the few times we just forced him to cooperate she saw what she needed to evaluate. The therapist said she was really impressed at how well Jadon incorporates "Righty" into his play. She called Dr. Kozin to come up so we could talk about what she saw. He sat and watched Jadon play for a little while also. Both the therapist and Dr. Kozin feel that the elbow extension is definitely there. Also that finger extension has improved since the last visit also. The big issue at this point is Jadon's shoulder. We discussed the fact that the shoulder area is always really tight and hard for us to stretch out. We also mentioned that his external rotation is not very good. Dr. Kozin examined Jadon's shoulder (against Jadon's will). He said we needed to get an MRI to diagnose shoulder subluxation. When I looked up the definition of shoulder subluxation it is the separation of the humeral head from the glenoid cavity, resulting in strain on the soft tissues surrounding the shoulder joint. Clear as mud right???

Here is how I understand it.....Basically because the arm has not been used the muscle/tendons are not growing equally. The shoulder joint is also not developing properly, and because of this the shoulder is internally rotated. This means that his shoulder is always turned in towards his body. This really limits his use of his arm. Dr. Kozin said "I think we are going to have to go in and do something about that shoulder. It is really limiting all that he is capable of doing with that arm". He said we will wait for the MRI results then he will call us and come up with a plan.

The next surgery is called an arthroscopic anterior capsular release. From the sounds of things we go out for the surgery. I am not sure if he is in a cast afterwards. We come home for a couple of weeks then we go back out. When we go back out we would stay for a full five days of therapy before we can come home again. Yippee!!

Another interesting little bit of info we found out. Jadon's Benik splint he has been wearing since August.....Yeah...Made for the wrong hand!! Yup that is right! We put it on Jadon so she could check to see if it was fitting right and she paused. Then looked at us and said "This is made wrong!". There was a bar across the top. It was supposed to be on the bottom to help position his wrist. No harm was done but the splint was also not doing what it was supposed to do. So she took the splint from us in case she had to send it back to the company in order to get us a new, correct one. Ugh!

Hopefully I will be able to get the MRI scheduled on Monday and we can go from there!

Here We Go Again

2010-11-02T21:13:00.000-05:00

Tomorrow morning we leave for Philadephia. We will stop for the night in Ohio and visit with my cousin. Then on Thursday we will head on into Philly. Jadon's appointment with Dr. Kozin is on Friday at 8:45. As usual I am very anxious to see what Dr. Kozin thinks of Jadon's progress. I will be sure to update everyone after our appointment!

I wanted to share some pictures from last weeks therapy session. I love looking at these pics. He was working so hard! Ellen gave Jadon a box of stretchy toys and showed him how she wanted him to hold one end in his right hand and the other in his left and pull. At first he was not cooperating then all of a sudden he decided to give it a try. He probably continued to pull the little stretchy worms for about five minutes. It probably helped that Daddy, Mommy, and Ellen were all cheering him on. We were all so proud. Ellen was so proud she let him take on of the worms home to show off his new trick! Here are some pics I got! He pulled to hard with Righty that Lefty had to let go!! Mommy has since stocked up on some stretchy animals for home! Each week I find myself on the hunt for something fun we saw at therapy!

Jadon also did another round of e-stim. This time on his upper arm. She was looking for elbow extension. Unlike his lower arm, we could tell he felt that something was going on in his upper arm. Each time the machine would start pulses he would react. This time she was just getting him used to what it felt like so we did not do to many exercises while it was on. We are going to work up to that.

No therapy with Ellen this week since we are traveling. We will miss her. I will be back later in the week to let you know what Dr. Kozin had to say!

Kiana

Kinesio Taping Success!!

2010-10-20T07:54:00.001-05:00

The above picture is from yesterday. Jadon has had this round of kinesio taping on since last Thursday. That is a lot better than the couple of hours it was on the last time! Of course it has been long sleeve weather here so I think that has helped. Jadon had a really great therapy session last week. He is catching on to what Ellen his new OT expects from him quickly.

Here they're cleaning up some animals they were playing with. She makes him alternate between Lefty and Righty.

He got to push this cylinder over theraputy to smoosh it. They also hid bears in the theraputy and had to find them. He really liked that a lot.

I took pictures of his kinesio taping on Saturday because I could not believe it was still on. The gash by his eye is from falling down on our sidewalk. Ouch!

Just ignore the yellow paint we got on the tape during our art activity on Friday.

Last night we got out the exercise ball. It has not been out for home therapy in quite awhile. We used it a lot when he was smaller. At the last therapy session Ellen suggested we get it out again to help do those long stretches and to practice a little weight bearing. He does a lot of weight bearing on his elbow when he plays but never does any from the hand on up. Weight bearing is important because that is what stimulates bone growth. Jadon enjoyed having the ball back out again. He was giggling and laughing the whole time. That is the kind of home therapy I like!

When the tongue is out he is working hard!

I love that face!

At Thurday's therapy session Ellen is going to have a new home therapy plan ready for me. Looking forward to seeing what we got to work in! Being sneaky is the name of the game these days. If he even gets a hint that you are messing with that arm he walks away!

Kinesio Taping

2010-10-07T22:25:00.000-05:00

Jadon had his first official therapy session with his Occupation Therapist, Ellen today. They got right to work on some of the things we had talked about at the evaluation. Daddy took him to therapy today. Matt said she really forces him to use that right hand (which makes him so mad). If they are starting a new activity she gives him a couple choices and make him show her which one he wants using his right hand. When it is time to clean up she had him alternate picking up toys using both hands.

Matt took some pictures during therapy. They are a little blurry because Jadon was moving and Matt was using his phone. The brace he has on his for electronic stimulation. Ellen wants him to get used to wearing it before they actually begin to use the machine. He needs to keep it on for a certain amount of time and be somewhat cooperative. That could be challenging.....

At the end of therapy Ellen applied some kinesio tape to Jadon's shoulder and wrist to keep them in a specific position she is looking for. She did not show us how to reapply at this time. She wanted to see how it went this first time. Ideally the tape is supposed to stay one for a couple of days...but we are talking about the most stubborn toddler I have ever met. It was still on when he got home to see me so that was a bonus....however by 5 pm he had the wrist portion removed. The shoulder tape is still on. Hoping we can keep that on for a couple more days. He can't reach it as well. I am hoping that the next time it will be cool enough to put long sleeves on him and maybe he won't notice it as much. Here are some pics of it before he removed the wrist part.

Got some good tips for making therapy fun and new again from another Brachial Plexus family tonight. They used bath foam and bath paints in the tub and helped their child reach with the BPI arm to smear and she did not even notice she was being stretched. They also said they had toys that only came out when it was therapy time so they were special. One that really intrigued me was the platform swing they have in the house. She said they put their little girl on it on her belly and she would swing and have to throw toys in a bucket using her BPI arm. She is going to send pictures. I will ask if I can share them on the blog.

New Changes Around The Corner

2010-10-01T09:49:00.000-05:00

We are going to have some changes happening as far as therapy goes. Our awesome PT, Carri, said that she thought it was time to move to OT. She had talked with an OT, Ellen, at our local Children's Hospital. Carri said that Ellen had a lot of experience with BPI. So we had our evaluation with Ellen last week. We really like her. She asked a lot of questions about Jadon and worked with him to see what he could do. I had warned her on the phone that he has not been real cooperative with therapy lately. I guess it is that whole toddler independence thing. I have been having issues working with him at home. He used to let me stretch him out right when he woke up. He would sit on my lap and drink his milk and I would work with him. Now he does not even want me doing that. However, this is not Ellen's first time with a stubborn toddler. She put him in a chair with a seat belt and a tray to keep him in one place so she could do some activities with him. He was willing play along for the first few activities but it was not long before he got mad that he was being kept in one place. She was really patient with him. I liked that. I don't mind if he gets mad. He has a lot of hard work ahead of him. We really need to get that hand working.

The thing that makes him the most mad is making him use his BPI hand. He hates it! I think he just wants to forget about it! But Ellen did get him to move a block from the tray to the cup with that hand, but oh was he mad!! She did some coloring, puzzles, bubbles (something in every good therapist bag of tricks), and stickers with him.

After she was done evaluation where he is at we discussed some things she might be trying with him in the future. We talked about e-stim but she does not think at this time it would be a good thing. He is very active and really has to sit and be cooperative for long periods of time to do the e-stim. Plus he likes to remove his brace etc...and she says if he tries to remove the electrodes he will get a little shock. So not sure if/when we will be doing that.

We also talked about immobilizing the good arm to force him to use the bad arm. She said that sometimes they put the good arm in a cast for as long as a couple months. She said she did not think that would work right now for Jadon either. He would be so frustrated. But she did say that we may try immobilizing for shorter periods of time to see how that works. We would use a type of soft cast we could remove if he was just miserable.

The last thing we talked about was something called Kinesio tape. I hope I spelled that right. It is a tape that position certain joints where the therapist would like them to be and it stays one for days at a time ideally. She put a small piece of tape on Jadon's back before we left. She wanted us to keep it on for 24 hrs. to make sure he was not allergic to it before we do some of that therapy. She will be teaching me how to reapply what she puts on him in case he gets it off. I am thinking I had better watch closely when she teaches me. I can pretty much guarantee he will be trying to get it off. Therapy was sooooo much easier when he was little!!

So as you can see....we may have a bumpy and tough road ahead when it come to therapy. Jadon has a lot of hard work ahead of him, but it will be worth it. Someone remind me of this when he is a total grump because his good arm is immobilized please!

Our next appointment with Dr. Kozin is on Nov. 5th. Looking forward to getting input on how he things Jadon is progressing. Jadons external rotation continues to be tight so I am interested to see what he thinks about that. Wondering if more botox may perhaps be in our future.

I continue to be contacted by others on the same journey! I love hearing from you! We all need to support each other as much as we can! Keep sending me emails!!

A pic of Jadon with Ms. Carri, his PT, that he has seen since he was a week old. We are going to miss her while we take a month break from PT to focus on OT. This way the OT can see what is working on her end without any other influences.

Fun To Watch

2010-08-25T09:28:00.000-05:00

Yikes! It has been over a month since I have posted anything on Jadon's blog! Ugh! Things are the opposite over on our family blog. If you hop over there you will see that I have been trying to post daily. I want that blog book full when I print it!

Jadon has been a busy boy over the last month. Since I last posted we went on vacation. This was Jadon's first camping trip. He was not sure what to think of sleeping in a tent at first but soon got adjusted to it. He loved being outdoors all the time. While we were on vacation his Benik splint for his wrist came. I need to get pics of it!! Jadon actually asks to wear it. It straightens his wrist and opens up his hand so I think it makes it easier for him to use his hand to hold things. He used his hand alot. He sticks toys in it so he can pick some up more and more. Just yesterday I noticed him walking around the sandbox carrying both a bucket and a shovel! What is the big deal you say? The bucket was in one arm and the shovel was in the opposite hand. He was carrying around the bucket under his BPI arm and shoveling sand into it. I love seeing progress like that! It is the simple things that so many take for granted that are huge!

By the time I hussled over and got the camera ready he was no longer carrying it but you get the point.

Jadon is also getting very adventurous on the playground equipment. Nothing stops this kid!! I get a little nervous but I am trying not to be a crazy lady and let him explore and learn how to maneuver in this world.

Jadon trying to make his Momma crazy.

Jadon has also made huge progress with water therapy. When we first started aqua therapy several months ago he hated it! He would scream and get mad. The therapist would have to stop and let me get him calmed down. This would happen the whole session. At the end of the hour he was probably only getting 15 minutes of therapy! Then summer came along. With summer came pools, lakes, baby pools, and sprinklers. We came back from our vacation of camping and swimming in a lake and I told myself that if the next water therapy session did not go better we were calling it quits. I mean really.....he was not getting anything out of it! Of course the moment I have resolved to do this my son decides to turn the tables on me. Last weeks water therapy session was a breeze. He walked into the pool room happily, walked to the steps of the pool (wanted to get in himself of course), and into Carri's arms willingly. They played happily for an hour! It was fabulous. It went so well we are doing water again this week. It is so easy to stretch him out in the water. Keep your fingers crossed this week goes as well!

I will get back to you with those splint pics! Sorry it has been so long!!

Kiana

Some Relief

2010-07-14T06:51:00.000-05:00

Hello Everyone! Jadon had surgery on Friday to repair two inguinal hernia's. That has been the cause of all the pain he has been in since the end of December!! We finally figured it out!! He is doing great! The surgery was done as outpatient so we went home later in the afternoon the day of surgery. When we first got home he was tired and uncomfortable but by evening he was back to his normal self. You would never know now (four days later) that he even had surgery!! He is one tough kid. Now that those nasty hernia's are gone I am sure will be seeing a different kid! He was hurting so bad. Just wish we had found the hernia sooner.

Here is a video we took of Jadon playing peek-a-boo later in the evening after surgery. As you can see he seems pretty happy!

On the Brachial Plexus front we are trying a new time for therapy sessions. We have been going to therapy in the late afternoon. Jadon was not being very cooperative however. He has been grumpy, and not wanting the therapist to do anything with him. So we are trying early morning. I have had good luck in the mornings with home therapy. Yesterday we went to see Carri at 8. Jadon was MUCH more cooperative. He is still a lot more challenging than he used to be though. He just wants to go, go, go while he is there. He is a very inquisitive child, and is always exploring things. That can be challenging when you are trying to get him to sit still to do stretches! He was worn out when we came home from therapy yesterday. He fell asleep in the truck on the way home and stayed asleep even when I put him down in the house!

Jadon worn out after therapy!!

Jadon's Check Up

2010-06-08T11:31:00.000-05:00

Sorry I am so slow! We survived, and are home from our lastest trip to Philadelphia. Jadon saw Dr. Kozin on Friday morning. Dr. Kozin is very happy with his progress. Even pointed out to us that he is beginning to get some new functions we had not noticed. Elbow extension is beginning to emerge. Another function with is called pronation (rotating of lower arm so that palm is down) is also there. So exciting!

We expressed our concern to Dr. Kozin about how limp his wrist still is. Jadon is able to bring the wrist inward toward his body but we have not seen any outward/upward motion yet. Dr. Kozin will continue to watch that. He did not seem happy with the wrist function either. He wants Jadon to wear his "Superman" brace they made him last visit while he sleeps at night to stretch those muscles out to see if that helps. He says that the finger flexors are very strong and it will take a lot for the wrist function to overpower that function. We are remaining hopeful we will see improvement in that area.

The therapist measured him for a Benik splint to wear two different times a day for two hours at a time. This will bring the wrist up but still allow him to opportunity to try and use his hand. Perhaps even help him use his hand more. They are going to order it for us. It will go to Shriner's first where the therapist will fine tune it a little more and then she is going to mail it to us. I will take a picture of it when it arrives to share with you.

We go back in six months.

On The Road Again

2010-06-01T15:42:00.000-05:00

Wow! I can't believe how long it has been since I last posted! Yikes! Things have been so busy around here.

We are leaving tomorrow morning to start our journey to Philadelphia. Jadon has a check up at 9:30 on Friday morning with Dr. Kozin. I am very interested to see how he feels Jadon is progressing. I am growing impatient and at times anxious but I know that this is a slow process. I try to keep reminding myself of that, and stay positive. He has elbow. He is doing really great with bending at the elbow and when I stretch him out I feel how strong things are getting. We only see the wrist pull inward. No outward movement so the wrist just looks limp most of the time. I am a little concerned about that.

We continue to be concerned with his posture since he has started walking also. He does not walk straight and he does not lift his right leg as high as his left. So we plan to ask about these concerns also. Jadon tends to fall alot because of the combination of two issues....not having one arm to balance him, and the lopsided walking.

The weather here finally got nice enough for us to bust out Jadon's water table. I thought I would share some pictures of him playing. You can see how he bends at the elbow now.

We will update everyone after our appointment!

He Tries So Hard!

2010-04-13T07:08:00.001-05:00

I captured video today of Jadon taking his rt. arm in his left hand and trying to push buttons with it. He has been picking up that arm with his left one more and more lately but this is the first time I had seen him do something like that. I could not believe it! He stood there long enough that I was actually able to get two different videos of him. You will have to excuse the arguing kids in the background. I was afraid if I told them to be quiet it would catch Jadon's attention and the moment would be gone.

One Smart Boy!

2010-04-05T07:56:00.000-05:00

We are seeing more and more progress. It happens slowly but every little improvement is encouraging to us. One thing that really tickles me is when Jadon has something in his hand and wants to pick up something else. He will tuck a toy or his precious lovey under his injured arm so he can pick up the other toy. We were so impressed the first time we saw him do this. What a smart boy!! It has taken me forever to get a good picture to show you of Jadon doing this. He is usually too quick. Well, this morning I caught him as he was still waking up. He has his lovey in his hand and I handed him his morning tippy of milk. He tucked his lovey and took the tippy from me. Since he was enjoying his version of the morning cup of coffee he was still for a few minutes so I snapped away!

I also thought I would share a pictures of our kids with their Easter eggs. Jadon "helped". :) My husband called this picture "Three hams with eggs".

Some New Changes

2010-03-22T11:43:00.000-05:00

It has been awhile since the last post! I apologize. We have been busy, busy. We are seeing more and more movement out of Jadon's arm. I still do a double take when I see him walking with his elbow bent. More often than not these days he holds it in a bent position. We are now officially past our six months post op date. They told us not to expect anything new before six months post op. While we did began to see some changes earlier they were pretty much right on target.

When I stretch Jadon out these days I am getting more and more resistance. It just makes me want to jump for joy. We have worked very hard all these months of healing to help him remember that he has a right arm so that when it does begin working he uses it. We seemed to have accomplished that! When Jadon plays he tucks toys under that arm to hold them so he can pick up something else. So clever! The first time I saw him do that I just wanted to burst with pride. We keep trying to get a picture of him carrying something tucked under that arm but he is too fast! He also will bend at the elbow and lift with his shoulder when you are putting his high chair tray on to get that arm up and out of the way. I also see him holding it with his other hand more and more these days. I don't know if that is because he is getting more feeling in his arm as well or not. One day he fell asleep while eating his lunch. I went to wipe peanut butter off his BPI arm on the top part of the hand and forearm and he jumped! I was amazed. This time is so exciting. It is like watching a miracle happen. It pretty much is a miracle to get something from nothing! These are the first times since Jadon arrived in our lives that we have seen his arm function at all! Each day is a new day and we never know what we will see.

Because there is so much happening right now with his arm his therapist said it was time to go to weekly sessions to keep a good eye on things. That way we can catch and correct any "bad habits" or problems that might start developing along with the new movements. We are going to alternate water therapy with land therapy. He had his first pool session two weeks ago. He loves water and really enjoyed it. I think he will enjoy it even more once he gets more comfortable with it. I think he was a little confused the first session. Why is my therapist here in a pool? Why am I doing my therapy in water?

We are adding a new therapist to our "team". Jennifer will be taking over his water therapy. Carri, our regular therapist, says that Jennifer specializes in peds. therapy in the pool and would be a great addition to our team. Since we love Carri and trust her opinions that was all she needed to say. We have not met her yet. We were supposed to have pool therapy today but Jadon came down with RSV over the weekend and is still not feeling the best so we had to cancel.

We have had other issues also. In January Jadon began having what I called "pain episodes". He will be fine one moment and the next moment he comes to you and wants to be held. He begins moaning and acting uncomfortable. Sometimes he will cry and squirm like the pains gets worse. He won't let you put him down, does not want to drink or eat anything, and keeps his eyes closed. Almost like he is in a zone trying to block things out. These episodes last anywhere from an hour to several hours. Then he will sleep for several hours and wake up fine. At first we thought that maybe he was having nerve pain because of all the healing that is going on. However, the episodes have become more frequent now. They were a couple of weeks apart. They have been weekly for about a month now. About four of the nine episodes have also had vomiting. I understand that extreme pain can make you vomit but twice he has vomited multiple times. The episode he has last Tuesday lasted about 4 hours and he vomited four times. We took him to the pediatrician the next day. We just want to make sure there is nothing else going on. They are going to begin ruling out things in the stomach/GI area. He had an xray of the abdomen. That was normal so they are going to do an Upper GI next. A couple parents of children with Brachial Plexus injuring have shared with me that their children has pain episodes but not as frequent as Jadon's. If anyone reads this and has had this experience I would love to hear your story.

Well, that is all for now!

Kiana

Jadon Is One Today!

2010-02-26T09:45:00.000-06:00

I can't believe it has been a year since this wonderful, beautiful, amazing, strong, and brave child came into our family. We are so very thankful for the blessing of this amazing child. This year has been very busy, scary,and frustrating when it comes to learning about and dealing with this injury. It was overwhelming at first to do therapy among all the other things that are required when caring for an infant. All of that is routine now. I don't think even 10 months ago I could imagine myself saying that but it is true. Daily therapy and therapy appointments are just part of life now. We continue to pray and wait to see more miracles.

To celebrate Jadon's birthday I wanted to share with you some pictures from everyday life with Jadon. He just keeps smiling. Thank you to all of you who have been sharing this journey with us and sending up prayers of healing for Jadon. We appreciate you very much and hope you continue to follow our little Superman and he continues to show us what he is made of.

Happy Birthday my sweet boy!

Definately something happening!

2010-01-26T17:30:00.002-06:00

That's what Carri, Jadon's physical therapist said. At least half of the bicep seems to be working. She wants to start him in the pool for water therapy, possibly in two weeks. We'll be able to see very small muscle movements easier in the pool. So exciting!

More elbow grease?

2010-01-24T09:15:00.004-06:00

During the past few days we've seen hints of Jadon's arm bending at the elbow! We'll have to wait for Tuesday's PT appointment so that we can confirm that it is truly bicept and not some other force (shoulder shrug, gravity, wishfull thinking, etc...). The next few months should prove to be exciting. It has been 4.5 months since surgery and the results are to start showing after 6 to 8 months.

One Step at a Time!

2010-01-20T07:27:00.002-06:00

I just wanted to share Jadon's latest accomplishment. On Dec. 30th at the Ronald McDonald House Jadon took his first step. Since then he has been trying to take more and more steps. In the last week he has really been working hard on it. We will look over to see what he is doing and see him slowly working his way from the refrigerator to the table. Yesterday we got him to walk all the way across the living room. His brother and sister are having a lot of fun helping him walk. I don't know who is more excited in this video, Jadon or his siblings.

Back in Philly!

2009-12-30T12:18:00.006-06:00

We left home at 4 am Tuesday morning to catch the 6 am flight out of Peoria and landed in Philadelphia a little before noon. The flights went great because the noise from the plane puts Jadon to sleep everytime. He is asleep before the plane is even airborne. He woke up cyring on the descent into Philly, but everyone on the plane was complaining about their ears on that flight. The pilot seemed to be in a hurry to get us on the ground and decended rapidly.

Dr. Kozin saw a little more movement in Jadon's fingers than at the last visit, but no progress on the arm. He reminded us that we really shouldn't expect to see anything for two more months. Jadon's lungs were checked on the moving xray and both are moving semetrically. At the first appointment, his lungs were not equall, with the right not quite breathing as deeply. The phrenic nerve crosses the brachial plexes and was damaged a little at the time of his birth. That damage seems to have healed now. The best news of this visit is that they don't need to see us for 6 months!

The therapy department watched him crawl and listened to our concerns about injuring his right wrist but insisted that he will not injure the brachial plexus (the nerves). A wrist brace could help to keep the hand streached out and to help Jadon to realize the position it should be held in. They made him the brace pictured below. We chose red because it just seemed better than the white or black options. So that this would be clear to the only Cardinal's fan we know, we chose blue straps to make this a Cub's brace. Or, Jadon may want to call it his Superman brace. The new brace is pictured below.

He is napping now at the Ronald McDonald House. We don't have to be back to the airport until 5:30 this evening. The picture below was taken during our layover in Chicago yesterday. He was all over that waiting area. Walking along the chairs, waving and smiling at people, trying to be the center of attention. He really liked standing at the window and watching the trucks drive under.

Another first!

2009-11-16T10:42:00.002-06:00

Jadon pulled himself up to stand on Friday. Yes, the same days I posted on the blog that he was trying really hard but had only managed to go to his knees. He must have heard me! LOL!

He was really, really proud of himself. The first time he did it he had a huge grin on his face. I started clapping and cheering. Jadon got excited and starting doing a little dance and fell on his bottom. Ooops!!!

Later in the day he did it again and I was able to take some pictures. When he was still standing after I got a few pictures I decided I would take some video. It was perfect because I captured him standing, falling, then pulling himself up again!

Later in the weekend I took another short video of him standing up at one of his play tables. He is balancing enough here to actually let go with his good hand and play with the toy.

Jadon Scoots!

2009-11-13T07:58:00.003-06:00

It is official! Jadon is mobile! He has been mysteriously moving around the living room for about two weeks now. I would put him down in one spot and look back a few minutes later to find him across the room. I would watch him for awhile and he would not do anything. He would just look at me and smile. Now he is moving all over all the time. I captured this video yesterday. Things are a little crazy in the background but you can see how he has figured out his own way of getting where he wants to go. I am so proud of him. A mom is always proud when her child accomplishes mobility, but in Jadon's case it is even more special. I will admit that there were several moments early on when I truly wondered how he was going to manage. Lots of people told me he would find a way and he certainly has. He is amazing!

He has also been trying really hard to pull up things and stand also. He has gotten very good at pulling up to his knees but has only managed to stand once or twice. For almost nine months old he is doing great though. He is definitely one determined boy.

Cameron's Smile Family Picnic

2009-11-06T15:27:00.004-06:00

Jadon, Me, Anise, and her son Cameron.

We went to the Cameron's Smile 2nd Annual Brachial Plexus Family Picnic on October 17th. The weather was a little chilly but not too bad. We got the opportunity to meet and talk to many other families with children just like Jadon. The youngest was four months old and the oldest was 14. It was nice to see children that were a little farther down the road than Jadon. The guest speaker was Mr. Kenneth Levine, a lawyer from Boston, Massachusetts. He had a lot of good information and advice.

I also got to see Anise again . She runs the website Cameron's Smile. Cameron is her son and she runs the St. Louis support group. I got her information from the therapists when we went to St. Louis Children's Hospital for the consult. I emailed her not long after that visit and she has been a HUGE support for me. Whenever I am frustrated, worried, or have questions about anything she has been there for me. We got the meet briefly in Philadelphia. Their consult with Dr. Kozin was the same day as Jadon's first post surgery follow up appointment.

Jadon got to see Mickey and Minnie Mouse also. He was not sure what to think about these huge mice. He just kept staring at them. We spent all afternoon at the picnic and had a really nice time. It is nice to spend some time with people that COMPLETELY understand what you are going through because they have lived it.

Jadon meeting Mickey Mouse.

Brachial Plexus Awareness Week Oct 18th-24th

2009-10-19T12:16:00.002-05:00

Did you know that shoulder dystocia and brachial plexus injuries are more common than CP or Downs syndrome? Please tell everyone you know about shoulder dystocia and brachial plexus injuries. Urge your friends to talk to their OB/GYN's or midwives about their risk of a shoulder dystocia emergency and how to prevent it.

Tell one woman, save one baby.

Brachial Plexus Injury Awareness Week Oct 18 - 24.

On the way home again!

2009-10-02T21:39:00.003-05:00

We drove to Philadelphia on Wednesday and Thursday, saw Dr. Kozin this morning, toured the US Mint this afternoon, and headed back to Ohio. Jadon got the casts off of his legs and the wrap off of his arm. No tummy time and no lifting his arm above his shoulder for 3 weeks. They tell us we can minimize the scars by massaging them and keeping them out of the sun. I posted pictures below of the incisions that were unveiled today. So far, an uneventful trip but, we have met several great people, all facing their own challenges. Next visit is in three months.

2009-10-02T21:35:00.001-05:00

On the Road Again.

2009-09-28T07:31:00.003-05:00

Well, I am not sure where the last three weeks have gone. It all seems a little fuzzy. It could be the three hours of sleep that I was living on for those first two weeks. Somehow it is already time for us to return to Philadelphia for Jadon's follow-up appointment with Dr. Kozin. I can't wait! We have one stinky baby right now! No matter how hard we try to keep the wrap his arm is in clean and dry he still manages to spit up on it. The casted feet are not smelling to rosy right now either! I will be taking baby wash and baby lotion and a wash cloth to the appointment with to scrub him down after everything is off.

I also can't wait to cuddle him with out all that stuff on. It has been very difficult to get good snuggle time in. I know Jadon can't wait to sleep on his stomach again either. His sleeping has improved in the last few days. He even slept six hours straight one night which was not something that happened much before surgery. Last night though he was up a couple times in the night. He just can't seem to get comfortable sometimes.

We are going to be driving out to Philadelphia again. The other two kids are staying here with my sister so they do not miss anymore school. Shelby is still trying to make up work she missed from the week we were gone for Jadon's surgery. We will be leaving on Wednesday morning. The first night we will stay at my cousin's house in Ohio and then hopefully we will get back in to the Ronald McDonald House for the two nights we need to stay there. Keep your fingers crossed!

Jadon's appointment is on Friday morning (Oct. 2nd). I think Matt wants to go see the US Mint that afternoon. Then on Saturday morning we will hit the road again to return home.

Doing Better Everyday

2009-09-14T13:38:00.004-05:00

Jadon is such a trooper!! Everyone who has seen him since we have been home can't believe how wonderful he is doing. I have also heard "Still the same sweet little boy" a few times also. He seemed to struggle with pain on Saturday night into Sunday a little more than he had been. Today (Monday) he seems to be doing better though. He was thrilled to see his David come to play this morning. He just looked at him and his whole face lit up. I have been talking to a few other mothers who have had a child go through this and they have both said that their child was done taking the Tylenol with Codeine by this point. So my goal now is to keep Jadon comfortable on regular tylenol and ibuprofen. Keeping fingers crossed.

I scheduled our follow up appointment for Friday, October 2nd. So now we begin planning yet another trip to Philadelphia. Hopefully that will be the last one for awhile!

Home At Last

2009-09-11T21:52:00.002-05:00

Hello All!! It is Kiana this time. We are home. We rolled in around 7 p.m., but not before we let Shelby off at the football game to see her friends. She was dying to see her friends. Cindy was nice enough to make us supper. It was wonderful to come home to a home cooked meal. Our house sitters, Dani and Brian, were also here to greet us. Thanks guys for taking such good care of us!

The trip home today was uneventful. Long but no vehicle malfunctions! Thank goodness!! I am currently unpacking and getting ready to do laundry.

Thanks to all of you who prayed and prayed and prayed for us this week. Some of you we don't even know!! Words can not express how much each and every thought and prayers from loved ones and strangers alike have meant to us. They carried all of us through this very long week. Please continue to keep Jadon in your prayers as he heals from his surgery.

Well. That is all for now!

Detour

2009-09-10T10:55:00.005-05:00

We had dinner last night at the RMH with a family from the Champaign, Il area. They have a 4 year old that had the same injury as Jadon. He had nerve grafts when he was 13 months old in St. Louis and then in May of this year had a tendon transfer surgery by Dr. Kozin. This trip was a followup to that surgery. What I found very encouraging is, we would have never known this child had a bad arm. He has limited motion when he tries to bring his left hand towards his waist, but he has a very good range of motion. He did not seem to favor the arm at all. This was the fourth trip to Philly for his family, and they have driven each time.

Jadon was up at 2 am but we fed him and gave him his pain medicine and he went back to sleep. We cleaned up the room, packed the Jeep and headed out about 9:00 am. I won't go into why Jake rolled his window down, but it may have had to do with the eggplant casserole I had for dinner. We were in the worst part of Philly when 3 out of 4 windows on the Jeep went down, and then shortly after, only 2 of those would roll back up. After a couple hours of driving, Jake's window still refused to go up so we used a combination of the Garmin GPS and my phone to find and call a Jeep dealer that was close. That is where we are sitting now, enjoying the complimentary soda and watching "The Price Is Right". Not making any progress towards home though.

Jadon is eating, but he hasn't needed any pain medicine since 2 am. He sure is an attention getter. Two of the McDonalds employees felt sorry for him and brought him happymeal toys. A lady in the McDonalds parking lot had to stop and ask about him. Some people don't want to ask and I think they just assume we threw him down the stairs or something.

Discharged

2009-09-09T14:16:00.003-05:00

Tylenol with Codeine every 4 hours. Don't touch the wrap or the casts, and bring him back in a month to remove everything. Don't expect to see much improvement on the arm for at least 6 to 8 months. That was it. We filled the prescription for the Tylenol at Walgreens and headed back to the RMH. We'll start the drive home tomorrow.

Everything has a nerve attached now, but they were long nerve grafts and will take a while to grow together. We had hoped that we could have the pediatrician remove the casts and wraps, or maybe have it done at the Peoria Children's Hospital but Dr. Kozin really wants to see him in Philly in a month. Looks like Kiana and I will try to find a cheap flight. Now that we know his arm is down, and not cast in the "statue of liberty" position, we may be able to handle him on a plane.

Good Morning

2009-09-09T07:15:00.000-05:00

Jadon slept a few hours last night. Kiana said it was a little rough for a while so they upped his dose of morphine and even started to question whether they should switch medications. He was due for another dose at 3:45 am but slept through and missed it. I was able to hold him at 7:45 this morning, after he nursed in Kiana's arms. While I held him, he was smiling at his brother and sister. These were the first smiles we've seen. Then the meds wore off and he was screaming. They gave him an oral pain killer instead of IV morphine because that is what we will be discharged with today. Now, he sleeps.

During the screaming episode, the nerve Dr from the surgery team came by. He said that even though C6 was damaged beyond repair, he was able to patch enough graft in to get plenty of arm function back. I didn't ask the definition of "plenty" because I know it is a "wait and see" situation. The teams goal is to get full hand function, to get the arm above the head, and to be able to bend the elbow to get the hand to the mouth.

Lastly, I would like to point out that today is our anniversary and that I realized it first! I know Kiana has more than a few things on her mind, but I have to take advantage of this... it may not happen again!

Time To Recover

2009-09-08T19:54:00.004-05:00

It is now 9 pm and Shelby, Jake, and I are back at the RMH. Kiana and Jadon are sleeping in the PICU tonight. Tomorrow, he should be able to move to a regular room and then will probably be discharged later in the day.

He was groggy from the anethesia when he got out of surgery and sounded really hoarse because of the breathing tube he had had in. They gave him a breathing treatment with a nebulizer and then put a dose of morphine in his IV. That relaxed him a lot. He finally woke up enough to let us know he was hungry and Kiana gave him a bottle. He ate 4.5 ounces and fell asleep again.

He has a cast on both legs to protect the areas that they took nerves from. His bad arm is tapped to his side and his good arm is in a splint and has an IV started. When he does wake up, I don't think he will be very happy.

Almost Done!

2009-09-08T16:41:00.002-05:00

Dr. Kozin found us in the cafeteria and told us that they were closing up and just about finished. They took nerves from both legs and used them to "hotwire" around C6 because it was too badly damaged to use. Now we just wait to see what arm function he gets back. They told us that he will lose the progress we have made in the last six months. It is like starting over.

Dr. Kozin did say that we made the right decision about surgery. From what he saw, the damage was severe enough that Jadon's arm would not have made any any further progress. The movement he had is all he would have ever had.

Nerve Grafts

2009-09-08T15:59:00.001-05:00

Jadon has been in surgery for over seven hours and Dr. Kozin has not come out to update us. We are questioning if maybe he said he would come out after surgery and we misunderstood. The last phone update said that they are performing the nerve grafts now.

Still waiting

2009-09-08T13:39:00.001-05:00

We are still in the waiting room, waiting on the doctor. Dr. Kozin said he would come in after he had explored a little so he could update us. The surgery department just told us that they did have to cut his clavicle to clean up the scar tissue and that the Dr. is still exploring.

Surgery

2009-09-08T09:59:00.002-05:00

They took Jadon to surgery at 9:40. He has been in the best mood today, laughing and talking to the nurses. He has even had two separate offers for a date with people's granddaughters, one four months and the other three months old.

We met with Dr. Kozin and he told us that he would start with a botox injection to the shoulder to loosen it up. Then he would clean up the scar tissue that has formed and that may require cutting the clavicle. He would then decide if he needed nerve grafts from the legs or a nerve transfer. After surgery he willl go to the ICU for a while, because he is so young.

We are in the waiting room, waiting for an update. Dr. Kozin said he would come out and update us after he has had a chance to explore a little. I'll post again when I know more.

Arrived in Philadelphia

2009-09-07T20:49:00.001-05:00

We made it. I am typing this update from our room at the Ronald McDonald house in Philly. We have to be at the hospital at 7 am (Eastern Time) and Jadon can’t have anything but clear liquids after Midnight. It doesn’t seem fair since he eats every 3 hours all night long. He should be in a great mood by the time we get to see the doctor tomorrow morning!

We left yesterday morning at 8 am and stayed at a hotel in St. Clairsville, Ohio last night. The kids wanted to swim and it was Jadon’s last chance at swimming until he is healed from the surgery. He had more fun in the hotel pool than any of us. He loves to kick his feet in the water and splash with his left hand. We had hoped it would tire him out, but he still woke us all up at 5 am this morning. It was breakfast at the hotel and back on the road by 7 am.

The trip took us across Indiana, Ohio, a small part of West Virginia, and finally Pennsylvania. Mrs. Garmin (the GPS unit) said it was 663 miles and took us 14 hours 22 minutes of driving time, including the extra driving we did around the Gettysburg battlefield. We stopped at the Gettysburg museum and visitors center and spent some time there. Jake was impressed with a lot of the artifacts on display there because they all related back to the history unit he had last year in school.

Hopefully the hospital has wireless internet available. We will be updating this site as we get info, and it will be much easier if I don’t have to type the updates on my phone.

Travel and Communication Plans

2009-08-31T08:01:00.000-05:00

The time is going by way to fast. Next Tuesday is Jadon's nerve graft surgery in Philadelphia. We will be leaving for Philadelphia on Sunday morning. We will be splitting the drive into two days. The first night we will be staying in a hotel in a small town just past Columbus, Ohio. The next morning we plan to get up and head to Gettysburg to see the Civil War museum and battlefields there before we make our way into Philadelphia. We are hopefully (keeping fingers crossed) staying at the Ronald McDonald House for the duration of our stay in Philadelphia. We are not sure what time we have to be at the hospital on Tuesday morning. I expect to get that information by the end of this week. According to the information we have already receieved Jadon will have surgery on Tuesday and be discharged on Wednesday at some point. If everything is going well I think we will try to be back on the road home Thursday. We are going to stay at a cousin's house in Ohio that night and be home Friday.

On the day of Jadon's surgery check this blog. Matt and I have been talking about the best way to keep everyone updated and have decided that we will just post to this blog any updates we get. Please feel free to email us or phone either one of us if you want to talk to us. We just wanted one place to tell people to go to stay informed without having to send out a lot of email.

Less than 30 days......

2009-08-10T09:30:00.000-05:00

In less than thirty days Jadon will be having surgery. So many things to do. So many emotions and thoughts running through my head. I am hoping to get in touch with the person who takes room reservations at the Ronald McDonald House today. She was on vacation last week. We need to map out our route to Philadelphia. I also need to purchase some summer clothing in the 18 month size range for after Jadon comes out of surgery. He will be immobilized for about 3 weeks so I will need at the very least a weeks worth of bigger, preferably button down outfits for him to wear. I am hoping I have not completely missed all the summer clothes. So many stores switch to their fall/winter clothing so early these days. Keeping busy with these things helps to keep me from thinking about the moment when they take him from us to go to surgery or the hours and hours we will have to sit and wait and wonder what is happening. I have been told by some parents who have been through this that they got updates frequently and I am hoping that is true. We are taking Shelby and Jake with us,and I am hoping that they will help us pass the time. It will be nice to have our whole family unit there since we are so far away from home. We are not going to have my Aunt close by this time. Their house has been for sale for some time. My uncle's new job is in Minnesota and they are going to move up north. The timing on the sale of their house could not have been worse for us. They close on their house the day of Jadon's surgery. Their house will be empty and they will be in the process of moving while we are in Philadelphia. I am thrilled they sold their house but a little sad that we will not be seeing them. We are so used to being surrounded by friends and family here at home I think it is going to seem very strange.

Then there is our therapy appointment last week. Carri observed that Jadon seems to be favoring the left side of his body more than the right. He tends to keep his right shoulder in an elevated position and this is causing his head to tip to the left. She said that his neck muscles on that side are getting stiff. She also observed that when he is doing this his spine is curving to the left. Not something we want to continue to happen. So on top of the daily range of motion exercises we already do we have some new stretches and exercises to do. These are a little more complicated than what we have been doing since it requires his attention to be focused on something straight ahead of him while I hold him in the air and tip him to the left so that he bends to the right. We have to do this several times in a row about twice a day. I am going to have good arm muscles after these ones!!

In the last week Jadon has pretty much mastered sitting up. He does not quite understand that if he kicks back he is going to bonk his head on the floor so we keep pillows around him to cushion his fall. He catches himself when he starts to tip to the left but of course can't do that when he tip the the right, so that is a problem. Overall he is a happy kids who is getting more and more active and playful. He loves to read books and his new favorite toy is a broken real remote we gave him. He kept wanted the working remote to the t.v. but was turning up the volume and changing the channels randomly so we hunted down a broken one we had saved just for this reason. The next cell phone that breaks will be given to Jadon too. Jadon smiles for everybody and his smile just lights up a room and I am praying I get the same happy child back after surgery. He is truly a joyful addition to our home. He can make his sister and brother just gush. I love watching them together.

Jadon sitting like a big boy!

Surgery Scheduled

2009-07-28T08:47:00.000-05:00

Jadon turned five months old on Sunday. He has made a lot of improvement but there are still no signs that the bicep muscle is beginning to work so the plans for surgery after he turns six months old are in the works. Linda from Shriners called me last week to check on his progress. At the end of our conversation she told me that Jadon is penciled in for surgery on Tuesday, September 8th. They wanted to see his most recent therapy report to start finalizing everything. He had therapy on Thursday and Carri said she would call Sarah the therapist at Shriners to talk to her.

When I looked at the calendar I realized that the 8th is right after Labor Day. I am pretty sure he has to arrive a day early for a final evaluation and testing so I am not sure if the actual surgery date is the 8th or the 9th. I am not sure they would do his evaluation and testing on a holiday, but you never know! I sent an email to Linda, Dr. Kozin's nurse, and I am waiting to hear back from her.

Now we begin to make travel plans. I think we are still going to take Shelby and Jake with us even though school will have already started by then. I think we are also leaning towards driving this time. Mainly because we are concerned about Jadon's condition after surgery. We had to hold him the entire time in the airport and on the plane the last trip. I am not sure he will want to be held after surgery a lot. It was also very cramped on the plane last time and he will be "bulky" after surgery from what I understand. We just think if we can move at our own pace on the way home it might be better even though it will take longer.

So now the search begins for outfits that are about twice the size Jadon is in and preferably button down so they are easy to get on. He will have his arm immobilized and wrapped to his trunk with several layers of wrap, a cervical collar on, and also something on both legs covering the area where they harvest the good nerves.

When things get finalized and I know more details I will let everyone know! Continue to pray!

Change of Plans

2009-07-13T07:20:00.000-05:00

Sorry it has been awhile since my last update. Summer always get a little crazy around here. The last time I posted we were working on getting everything set up to go through the state's early intervention program and switch to Easter Seals one of their providers. Well, Jadon went through all the evaluation's and we had our IFSP meeting to discuss Jadon's future needs. The therapist that evaluated him said that he was on target developmentally except for the use of his arm. She also noted that we had seen new progress lately (triceps working!!!) and said that she felt therapy should be increased to weekly. This did not really make much sense to us because from what we have understood therapy right now is to strictly keep the joints loose and is not helping him heal. He is healing on his own.

At this same meeting we discussed what our monthly fee was going to be once we enrolled in the program. The fee is based on your income. Well our fee was going to be more than what we are paying after insurance right now by a significant amount. I even calculated what we would pay after insurance for weekly therapy and it was still going to be less than the monthly fee. We would be overpaying every month and the only benefit to us would be if Jadon were to ever hit the maximum dollar amount for our insurance in a year. We will not hit that limit this year and as far as I can see will not hit is next year unless he has to go to therapy twice a week for the whole year. Anything you overpay you are supposed to get back when they exit the program at the age of 3 but we are talking about the state. We questioned when and if we would ever see that money. So after all those meetings and work it appeared that the program was not going to benefit us in any way. We could not see any positives. We would be overpaying, increasing therapy to once a week, and we would have to leave our therapist we have now that we love. So after talking with Jadon's doctor in Philadelphia about therapy and having him confirm for us that is was okay to stay at every other week for right now we decided to not use the Early Intervention program at this time. They told us if we change our minds in the future to give them a call.

So I got to call Jadon's therapist Carri and give her the good news that we would not be switching to Easter Seals....We would be staying with her. It really feels like for now we made the right decision. We had established a relationship with Carri and we were really not looking forward to starting all over again. I will say that in the future if Jadon has any therapy needs that our current place can not meet we will be going to Easter Seals. It is a wonderful place and I was really impressed, but Jadon loves his Carri and we like the routine we have established with her so after everything we have been through in the last few months we have decided to stick with what makes us happy.

As for Jadon's arm...triceps are working. If you lift his arm in the air, elbow bent he can straighten his arm on his own (slowly) Grip is strong but he still has trouble relaxing or releasing a grip. His wrist hangs limp when you lift his arm, we have not seen any extension there. We are waiting to see if we can get the bicep working. We have approximately six more weeks until he is six months old. That is the cut off. If there is no bicep he will have surgery. We were told that we would have a date for surgery a month ahead of time so I am hoping in two weeks we have surgery scheduled and we can begin making our travel plans. Who knows! Maybe we will not need those travel plans...Jadon has already made more progress than we expected to see. We are really just one muscle away at this point from not having surgery. I just keep thinking that if we had not gotten a second opinion he would have had surgery by now. A surgery that I pray daily may not even be necessary. So for everyone who reads this...pray hard that we can get that bicep working in the next six weeks!!

Outside of his injury and his battle with acid reflux, Jadon is a very happy boy. He smiles all the time and laughs and plays. He loves to use his feet to do things. It is hard for me to watch him try to do something like roll over that I know would be so much easier if he had use of both of his arms. I just keep telling myself that he does not know any different and it is only frustrating for me. We are working on sitting up right now and he is getting pretty stable. I think we are close. We are also doing a lot more tummy time and some exercises to get him to reach for things with his good arm while on his tummy so that he shifts his weight onto his bad arm. The goal is to eventually get him to try and army crawl and scoot using just one arm.

Here is a picture of Jadon sitting with the help of his Boppy (love that thing).

Well...I have rambled on long enough. I though I would let Jadon have a few words....

Doing a happy dance!!

2009-06-11T15:39:00.000-05:00

We had physical therapy today and things are getting exciting!! At the last therapy appointment our therapist could not believe how much shoulder movement we are seeing. He is getting very strong. He can now bring that arm around with him when he tries to roll over. She also noticed how strong his wrist movement is now and thought she might have been feeling some triceps muscle movement also but was not sure. This time I remembered to bring Jadon's brace with me. Carri put it on Jadon to work with him so that he could not move his wrist and she could get a better feel in the triceps area. Good news! She is 99% sure we have a working triceps muscle now!! That is so exciting! Progress moves from the fingers up and now we are one step closer to not needing surgery. Now if we can get the elbow and bicep muscle going in the next two months we won't have to have surgery!

Keep the prayers coming!!

Today was also bittersweet. It is most likely our last appointment with Carri, the physical therapist that has worked with Jadon since he was three days old. We have grown to love her and always look forward to our appointments with her. She has been so supportive and caring through the whole process. I could not have asked for anything more. She was sent to us from up above. Because we will be using the Early Intervention program through the state we will be moving over to one of their providers. We have chosen Easter Seals. Carri had nothing but wonderful things to say about them and so have many other people. Carri recommended we use Early Intervention because Jadon has a long road with therapy and E.I. helps pay when you reach your limit with your insurance company. A very good thing! We are going to keep in touch with Carri, she is now forever a part of our lives. She can't escape us!! She is one of Jadon's biggest cheerleaders. I think she is sad that we are leaving just as things are starting to get exciting!

Carri and Jadon

A Home Away From Home

2009-05-27T15:26:00.000-05:00

When we took our trip to Philadelphia we were blessed to have my Aunt Connie two hours away in Maryland. We stayed with there for Saturday and Sunday and had a wonderful time. We did need to have a place to stay in Philadelphia the night before we were to leave to come home. We were very fortunate to get to stay in the Ronald McDonald House that was right by the Shriner's Hospital. We were hoping to stay there on this visit so we knew if we wanted to try to get our names on the list for when Jadon would perhaps need to come back out for surgery. We did not know what to expect but what we found was far beyond our expectations. This particular House was just built last year. It has fifteen rooms and it is full all the time. When we arrived we had some paperwork to do and then we were given a full tour of the house. We were shown the exercise room for parents, the rec. room for older children complete with a pool table, a fusbol table, and a juke box. There was a game room that housed the Wii, Xbox, and Playstation 3!!! You just had to go to the front desk to sign out the games. Each of the three floors had a community family room with couches and comfy chairs. These areas also had several rocking chairs for rocking babies, baby swings and exersaucer's. The community family room on each floor had a computer with internet access and the whole facility had wireless internet if you had your laptop with you. Each floor also had a laundry room with a couple of washers and dryers for the families who are staying for an extended period of time.

We arrived just in time for dinner which is served by voluteers, usually a family or group who brings in a complete meal for the entire house. The kitchen was open for use 24 hours a day. There were dishes and everything you would need to fix a meal. The only requirement was that you clean up after yourself. There was even a fully stocked pantry (mac n' cheese, spaghetti, etc.)that any guest could use. Any of the juice boxes, milks, etc...in the fridge were also help yourself. There was a great play area for little kids with a dress up area, a grocery store, and a lego area. I wanted to go play!!

When we got to our room we were even more amazed. The rooms were very large. I have included some pictures. There was fridge in each room, a t.v. and dvd player. You could go down to the front desk and they had movies for kids and adults that you could check out. The beds were sleep number beds!! We were excited about that! They even had Pack N' Plays for the babies! Because the facility is almost completely run by volunteers they ask that you vacuum your room, clean your bathroom, and put your towels and linens in a laundry basket before you leave.

We thought that it was a very warm and comfortable place to stay. It was not only the environment and the wonderful staff but just knowing that everyone there was going through something similar to you. We did not know anyone there yet we shared a kinship with them. You felt safe there. All of that for $15 a night! I will always put my change in the Ronald McDonald boxes when I see them. I have also read that when the new addition to the Children's Hospital of Illinios is done it will include a Ronald McDonald House. I am hoping this is still true. I plan to give back. I would consider it an honor to provide meals or any other type of service when it opens. I just wanted to share our experience with you. On this journey my eyes have been opened to many agencies and services that I knew existed prior to this but had never investigated. I am learning that they all play a vital role in supporting the well-being of the families in need and I am amazed.

Jadon's visit with Dr. Kozin in Philadelphia.

2009-05-18T21:58:00.000-05:00

Written by Matt:
We saw Dr. Kozin this morning. We left Connie & Les' house at 6:30 this morning and by the time we got through the traffic, found the parking deck, changed Jadon, made it through registration, and took the elevator to Dr. Kozin's area, it was 9:58 am. I could have slept two full minutes longer this morning. Darn.

First a Dr. Jeffry Johnson came in and introduced himself as a "Fellow of Dr. Kozin's". JJ as they called him took down all of the information he could get out of us about Jadon. Everything from how the pregnancy went to the delivery and then to the progress we had seen this far. JJ then went to get Dr. Kozin and within about 20 minutes, we had the entire surgery team in the room with us. This was 6 doctors, Dr. Kozin's personal nurse, and the physical therapist. JJ reported the info he had taken from us to the group while Dr. Kozin played with (examined) Jadon. They said they would be more than happy to preform the surgery there, as he gets closer to the 6 month mark. We really liked what we saw of the entire team. I told Dr. Kozin that Dr. Park in St Louis had said we shouldn't expect any movement from Jadon's shoulder, ever. Dr. Kozin said he would not agree with Dr. Park's assessment. He thinks that there is a good chance that there is enough nerve intact to graft onto. Especially since there is no damage to C8 (allowing him to grasp with his fingers and move his wrist). He drew it all out on the paper on the exam table. I tried to take a picture, but it turned out a little blurry. I attached it below. Looks more like ET than Jadon, but it shows the vertebret, C5, C6, C7, C8, & T1 (top to bottom).

He said that he does not believe Jadon's eye is Horner's syndrome. There is not a noticeable difference in pupil size, and in blue or green eyes it should be very easy to tell. Very hard in brown eyes but Jadon's are blue. He didn't have a reason for Jadon's "squinty eye", but did not aggree that it was Horner's. That means that T1 and C8 are OK. The damage was done to C5, C6, & C7 making this an "Extended Erb's Palsy". Typically, Erb's Palsy only affects C5 & C6. He really won't know how much damage until they are in there during the surgery. He wants us to schedule the surgery for the late July or early August timeframe and then cancel if we see any movement of the bicep before then. That will give his nerves the max time to heal on their own before irreversible muscle loss takes place.

After meeting with the team, JJ took us down to exray to do a "flouro". This is some kind of a low radiation moving exray. This was so that we could see the nerves that cause the diaphragm to move. These nerves are very close to the damaged nerve bundles. Jadon's right lung did not seem to move the same amount as his left when he cried for the moving exray. This is something to watch, and could cause need for a followup surgery as he gets older. It is interesting that the Dr. in St Louis ordered a still exray and determined that things were fine in this area. Dr Kozin said that the still xray is worthless for determining the health of these nerves.

Before we left, we met with a physical therapist who went over the exercises with us again. She also made a splint for Jadon's hand so that the fingers and wrist will be held extended instead of curled up. He is to wear it only when he sleeps so that he can have the chance to move those fingers when he wants to. Oh, and the MRI that we have scheduled in Peoria is not needed. Dr. Kozin said his team no longer uses the MRI because they have had too many cases where the info is not correct or really hard to read. They gave up on MRI's and just wait until they go in during surgery. MRI's just did not prove to be worth the risk and trouble. That's it. All we know. Seems like a little more upbeat diagnosis than when we left St Louis.

Jadon's Itinerary

2009-05-08T15:26:00.000-05:00

So here is the things that are happening in the next two weeks:

Tues. May 12 @ 1:15 meet with Early Intervention services (state) for evaluation to use their services.

Thurs. May 14 @ 2:00 Physical Therapy at St. Joe

Sat. May 16th @ 6:00 am fly out of Peoria to Chicago then Philadelphia

Sat. May 16th @ 12:00 land in Phili, rent a car, and drive to Gaithersburg, MD to stay with Aunt Connie and Uncle Les.

Sun. May 17th- Hopefully check into the Ronald McDonald House in Phili.

Mon. May 18th @ 10:00 Appointment with Dr. Kozin at Shriner's Hospital.

Tues. May 19th @ Depart from Phili and arrive home at 5:51 pm.

Wed. May 20th @ 8:00 MRI of c-spine at St. Francis

That's all for now!

Another reason to love the Cubs!

2009-05-07T09:49:00.000-05:00

I just found another reason love our Chicago Cubs!! I was on a website called Two Little Monkeys. It was started by a family with a child that has an OBPI (Obstetrical Brachial Plexus Injury). Their child was treated at Shriner's in Philadelphia and they were so grateful that decided to find ways to raise money for Shriner's. They also find ways to educate people about OBPI's. I was reading about their annual fundraiser and on the page that listed the contributors for the silent auction the Cubbies were listed. The silent auction raised $10,000 for Shriner's. It made me feel very proud that the Cubs were a part of that and I just thought I would share.

Have an appointment at Shriner's finally.....

2009-05-06T16:43:00.001-05:00

Phew! I am worn out from making phone calls day after day to get things done. Finally today we have a date to go to Shriner's in Philadelphia. We have an appointment with Dr. Kozin on Monday, May 18th at 10:00 a.m.. He was nice enough to work us in between surgeries that day. I am a little intimidated by the "list" that is coming in the mail for me to take care of, along with a packet of forms. Maureen said that just a few of the things I need to bring are: birth certificate, immunizations, SS card. Fun, fun. But woo hoo we finally nailed down a date!

We are in at Shriner's

2009-05-01T10:34:00.000-05:00

Jadon is in the system at Shriner's. We are just trying to work out the scheduling. Dr. Kozin usually only see's his Brachial Plexus patients on Wednesday's. We explained that we were hoping to travel on either side of a weekend. That is what would be easiest for us. Matt is waiting to hear back from the person who has the power to do that. She said we might be able to get Jadon seen between the doctor's surgeries on Fridays. So I just wanted everyone to know that we will be going to Phili just waiting to hear when.

St. Louis Trip

2009-05-01T07:10:00.000-05:00

Hi Everyone! We have just returned from St. Louis. The news we received today was the news we had prepared ourselves for but that was still hard to hear. Jadon's damage is severe enough that he will not improve without surgery. Dr. Park wants to do surgery as soon as possible. We have to schedule and do an MRI at the Children's Hospital in Peoria. Then once they get the results down there from that they will schedule surgery. They won't really know how bad the damage is until the go in during surgery. Dr. Park made it clear that Jadon will never have full recovery of his arm. He will never have 100% use of his arm. The goal in surgery will be to get his hand and wrist functioning better and get the arm moving from the elbow down so he can do some normal life things like lift his hand to his mouth and pick up things. He said that most likely he will not be able to lift from the shoulder.

I will let everyone know when things get scheduled. We are still planning on going to Shriner's in Philadelphia for a second opinion. They have not returned my phone calls. I plan on calling them again tomorrow.