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.
Monday, August 31, 2009
Monday, August 10, 2009
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!
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!
Tuesday, July 28, 2009
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!
Monday, July 13, 2009
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....
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....
Thursday, June 11, 2009
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
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
Wednesday, May 27, 2009
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.
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.
Monday, May 18, 2009
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.
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.
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