Re: Prayers Would Be Greatly Appreciated - 365 Days & Counti

Sat Jan 05, 2013 10:18 am

Yesterday was Sam's 365th day in hospital. Not a lot has changed, she still has much of the same problems. One of the good things that have happened is as a result of her twin Amanda's diagnosis of MS it that her neurologist has been looking in different areas. One of the problems he has identified is the on-set of an auto-immune response triggered by the RSD/CRPS issues. This response is a really difficult issue - and one in which her neurologist (same as Amanda's and mine) has enlisted the help of the Mayo Clinic. If any clinic can figure this out, it has to be the Mayo or so we are hoping.

Suffice to say that Sam has improved since our neurologist has started her on a steroid regime, in fact enough for her to be able to get into a power wheelchair. It was a God send for her as her goal was to come home for Christmas Day was realized. It was a great Christmas for our family. She had specialized transport (our new to us '99 DGC Handi-Van isn't quite ready) and came home at 10am. She spent the majority of the day with us and was picked up again at 4:30. It was hard on her and she payed for the day, but in her words it was definitely worth it.

Prayer, faith, attitude and a strong family connection/support base helps immensely when someone is trying to survive/progress in a situation like this. Without all of your prayers and support we know that it would have been a far more difficult road to travel if not almost impossible. So we wanted to share something with you all. Em and I are true believers in the power of prayer and in attitude. We have always tried to keep it upbeat with Sam (well any of our family who are having health issues), and it seems to have worked. Although Sam is still in hospital and her recovery is progressing somewhat (although not what we had hoped for by this time), there is lots that we are thankful for and a lot to be positive about. Sam and Em decided that since her anniversary was upcoming, that instead of marking it with a negative connotation it was time to do something positive and celebrate the positives.

So we had a little party :idea: :!: :D

Image

Butter Cream from Costco :wink: Wish we could send you a piece :D

Thanks again for all of your prayers and support over the past year. We have multiple challenges in the health arena, but each one taken separately, managed with faith, prayer and support makes them all manageable. Well.. somewhat :wink: Please keep Sam in your prayers, she is a very long way from being out of the woods yet.

Re: Prayers Would Be Greatly Appreciated - Update -

Sat Jan 05, 2013 10:51 am

We'll take any good news after all that Sam and your family has gone through. Glad to hear things are on the upswing. I will continue to keep you all in my prayers. Image Thanks for the update. Keep 'em coming.

Re: Prayers Would Be Greatly Appreciated - Update -

Sat Jan 05, 2013 11:01 am

Whenever I hear these stories I look at my daughter and realize how lucky I am to have her. I can only imagine the pain your family deals with on a daily basis. Rosie and I hope things continue on the upswing for you, Samantha and your family.

Re: Prayers Would Be Greatly Appreciated - Update -

Sat Jan 05, 2013 11:25 am

Rudi God Bless her. Samantha's positive attitude about the anniversary and the trip home for Christmas are a blessing.

Re: Prayers Would Be Greatly Appreciated - Update -

Sat Jan 05, 2013 11:53 am

Prayers on the way.

Re: Prayers Would Be Greatly Appreciated - Update -

Sat Jan 05, 2013 12:11 pm

Prayer has been lifted up.

Bill

Re: Prayers Would Be Greatly Appreciated - Update -

Sun Jan 06, 2013 9:07 am

Keeping you and your family in our prayers: I believe your whole family are "Super Troopers!" May God continue to Bless you and get you and your family through the tough times you are having.

Re: Prayers Would Be Greatly Appreciated - Update -

Tue Feb 12, 2013 10:30 pm

I have been praying for your daughter and your family
God bless you all. He hears our prayers and answers them.

Re: Prayers Would Be Greatly Appreciated - Update -

Thu Feb 14, 2013 11:31 pm

Prayers still comming from here.

Re: Prayers Would Be Greatly Appreciated - Update -

Fri Feb 15, 2013 2:55 pm

Prayers from Va.
Berlin

Re: Prayers Would Be Greatly Appreciated - Update -

Fri Feb 15, 2013 3:19 pm

Prayers still going up from us too, Rudi !

Re: Prayers Would Be Greatly Appreciated - Update -

Fri Feb 15, 2013 3:54 pm

Thanks to you all, your thoughts and prayers are greatly appreciated. Sam, Em, I and the rest of her siblings surely do feel them and we know the power of prayer does work. Thanks be to God.

Time for a little update I guess. Sam is getting along on her latest therapies and some of the seem to be working. There is some improvement in muscle mobility, it is marginal but it is progress. There also has been diagnosis and courses of therapy for her respiratory difficulties as well. Some physio is working but it is still on a very basic level and is essentially on hold until she can reach specific targets. Again progress - just marginal - but it is progress :) Her job is to get strong and get well, our job is to do everything else.

Em and I have been attending dozens of meetings with the care team trying to overcome specific obstructions/obstacles and other factors relating to not only Sam's care but her progression and eventual discharge from hospital. At this point in time coming home is totally out of the question as our home is not handicapped accessible enough to accommodate Sam's specific needs. The end goal since she will never be able to re-enter the normal workforce or even live in a standard community environment is to find/build a suitable home for her. In the meantime transitional accommodations/care = extended care residences seem to be the most viable option. That is now the goal. As long as she is in hospital her chances of re-integration are essentially nil.

Now that there seems to be some light at the end of the tunnel for the med issues (no she will never be what she was) we must now plan for her new future.

I wish the same could be said for Amanda. Mandy has just come back out of the hospital - she was in for a few days. Her neurologist redid the MRI's and a bunch of other tests. Seems she has 8 more lesions since November and it appears that the Interferon Beta 1 Alpha is not doing the job. She has a very aggressive form of MS which is going to be a very difficult issue to deal with. Suffice to say that is about all we know at the moment and we are awaiting the results of a number of tests. We shall see where it leads.

We are Image

Re: Prayers Would Be Greatly Appreciated - Update -

Tue Feb 19, 2013 9:57 pm

And we are to Rudi.