Thursday, June 25, 2009

Another Convincing Opinion!!!!

Can't even wrap my brain around the dr appt today to get a good post out, but know many of you are waiting to hear the outcome of today's visit. He came right out and said he would never operate on Bryson's hips. He gave us some pretty convincing reasons mostly that is spelled arthrogryposis! Basically, he said he can fix the hip dysplasia and make his hips look great on xrays, but he will never be able to fix the arthrogryposis which is the source for the hip dysplasia to begin with.

He is going to talk with an internationally renowned doctor of arthrogryposis and hip dysplasia for us about Bryson. He is going to confer with our St Louis doctor as well. He is getting us medical journals that reinforce his theory on leaving Bryson's hips as is. It is basically our decision to do it or not, but as he said we have no time to waste. In fact, by the end of this year it is too late. He will support us post op, if we decide to do surgery such as cast changes or whatever so we don't have to travel back and forth to St Louis. He was graciously offering us any assistance even if we don't take his opinion. He was very nice and spent ALOT of time with us.

He firmly does not believe that Bryson's quality of life will be any better with his hips in their sockets. In fact, he says there is a better chance it could be worse off. He does not believe we can even hit a home run with Bryson, maybe a double.

He also put it very nicely that Bryson will never walk or be like us physically with his hips in or out due to the arthrogryposis. He will always have to adapt to navigate his way through life. He did say that he will amaze us with what he will be able to do and once again told us how brilliant Bryson will be. (We already know that!)

We will continue to pray, to gather additional information, pray, talk to our doctors, pray and then Robert and I will be forced to make what we feel is the best decision for our son.


Karen said...

Praying too. I know this is not an easy decision, but I also know that God will lead you to the right decision for Bryson.

Lori said...

Wow. That is very convincing. I will pray that the other doctors' opinions will make your final decision very easy.

Chris said...

Well you have to admire the Dr for sticking to his opinion, even if it is really not what you wanted to hear. Where is that big neon sign that God should have to show us the best decision.

Christine said...

Oh my. God is bigger than this news. Please continue to keep us updated.

Jean said...

I read your post last night and had to rad it again- every single word of it- it is just not a cut and dry situation. My heart aches for the confusion you must feel.

The doctor is right Bryson is an incredible child- he may not have the gate that other children have but he is such a survivor and he will be fine. He is perfect the way he is but yet as a parent you still want to do all you can do for your child.

I will be praying for clarity, direction and God's peace for you and Robert.
Your two are awesome advocates for your son!

Anonymous said...

Oh boy, what a tough decision this is going to be. I'm sure you'll keep us informed. I will be thinking about you,


Tracey S. said...


My prayers are with you on this one. This is probably the biggest dilemma parents face for their Arthrogryposis kids because well the doctor is VERY right, putting his hips back in could create more problems. My dysplasia was corrected because it was unilateral so there was no question about putting it back in. If you are interested in hearing my experience let me know, I don't want to share unless you want to hear it!

I also want to say, I applaud and admire you for traveling to St. Louis for the casting! Proper serial casting would have saved my foot from the external fixator and a whole array of other problems. May I ask the name of the doctor in St. L and is he using the Ponseti Method of casting?

scrappy quilter said...

Sally, continued prayers for Bryson and for wisdom for you guys.

jenn said...

Hey Sal,
Sounds like you are receiving excellent advice and Bryson is receiving extraordinary care. Follow your heart and God will always lead you in the right direction.