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....