Back in Philly!

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!

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!

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

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

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!

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.

On the Road Again.

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

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

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

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

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

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

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!

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

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

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

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

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

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......

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

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

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!!

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

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.

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

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!

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.....

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

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

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.