Our Hope

By sharing our story and our experiences with this birth injury we will hopefully educate people. Knowledge is power. Our hope is that you will read this blog, share it with your friends, and they will share with their friends. Then in some small way we have prevented other families from having to go through what we have.

Monday, August 31, 2009

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.

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!