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.

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....