Thursday, April 30, 2009

It's A Matter of Hips!

Kept the post of his first steps a little while before being doom and gloom with the next bit of information. With Bryson out of casts and the focus off of just his feet, his hips have become a major concern for us. We are feeling a little overwhelmed right now with everything that is wrong with his hips and how that affects every other part of his body.

At first we were told there was nothing we could do with his hips. That he was too old to have them put back into the sockets. This may be true, but we are also thinking that we should get a few more opinions. I have been making my husband crazy doing LOTS of research (imagine that!) and am learning of a few renowned doctors who specialize in pediatric hip dysplasia (out of sockets). Granted most all these cases are done in infancy and toddlerhood, but there are a few doctors who have older child experience.

We feel at this point we owe it to Bryson to see what more can be done for him and not just settle for nothing can be done. If we do nothing we know that not only will he not walk very well, probably never run, and will definitely need hip replacements down the line. But more riveting is finding out his spine will start curving and will end up in a "c" shape if we do nothing. His left hip, the femur is shoved up and out and the right hip is shoved down and out. This is creating about a 2" discrepancy in leg lengths. You can literally hold the head of his left femur in your hand.

If they can do surgery, it is a horrific operation and then you spend a minimum of 16 weeks in basically a body cast. We can not imagine doing this to him after everything he has been through. It feels like a darned if you do and darned if you don't scenario. We just want Bryson to have the best and fullest life possible, not just now as a kid but as an adult.

So our goal over the next two months is to have him seen by three of these doctors( in Sacramento, San Francisco and San Diego), get each of their opinions and then go forward with what would be best for Mr. B. Please pray for wisdom and direction on what to do.

As for now, Bryson is bearing some weight on his feet. He can hold onto the couch and walk the length of the couch holding on. He is not standing unsupported yet. We hope to get him a walker in the next few weeks. He is going back to Shriners tomorrow to look at his braces. They are causing a pressure sore on his leg and seem to be allowing his feet to turn in a little bit- and mama wants NO bit!

I need to get on video Bryson's pure joy that randomly hits him throughout the day. Several times each day he gets so excited and says, "Bryson no more castadees. Bryson so happy. Mama and Papa fix feet!" It is beyond precious! Wouldn't it be wonderful if someday he can say, "Bryson no more castadees. Bryson so happy. Mama and papa fix hips!"


Lori said...

Oh that sweet, sweet boy! I will be praying for his hips and that you have wisdom and clear discernment on what to do for him. Even though he is an "older" child...I just wonder if his weight being so low could be to his advantage in this. Perhaps it will help make surgery easier with him being small for his age. Just a thought.

K said...

I'm so glad you are a grand researcher. Whatever can be done for you son, I'm sure you will find it out and make sure it's something that will add to his quality of life.

When you come to San Francisco, if you've no place to stay, you are welcome to stay with me. You can follow this comment to my own blog where I have my email address in my profile. I am a licensed home daycare provider so Bryson will have all the fun things he can imagine for his enjoyment and comfort while away from home. I live just outside of San Francisco.

Melody said...

I will pray that the Lord will guide you! It is so tough making decisions as parents. Our instinct is to protect our kids in the shortrun, but that can sometimes only cause them harm in the longrun. I pray God gives you clear answers as you seek the second (and 3rd & 4th) opinions!

I think it's wonderful that these appointments will be leading you to California! ;)

Karen said...

How blessed Bryson is to have you and Robert as his parents. His parents that are there to advocate for him and care for him and love him. I was thinking the other day where our boys would be if we had not brought them home. Sweet Bryson and my little one would still be walking on the tops of their feet and Bryson's hips would never have been addressed. Now he is blessed with a momma and poppa who would jump through hoops to get him the treatment he needs. blessed in deed.

Praying for great news from the hip doctors and peace for Bryson during this time AND I can't wait to see Bryson walking independently!

Jean said...

Bless you- so much to think about but you and Robert are so capable and such great parents! It is a long road but there are so many benefits for your sweet boy! I will be praying for you in MN!

I love his joy! You can see it on his face every time he smiles!

scrappy quilter said...

You have my continued prayers for wisdom and guidance and continued prayers for Bryson. Hugs..

Tracy said...

That is such a tough spot to be in as a parent. You know that what you are doing is for his benefit, not just now, but for his future. Knowing that it will cause him pain to get to that point is what makes it feel so wrong sometimes. Im sorry your having to deal with this right now especially now. So soon after his casts came off. I will deffinently being praying that the Lord would guide your decisions and that He would just give you some peace of mind.

bytheriver said...

Praying for Bryson & Miracles, HOPING for the best outcome, understanding those difficult choices parents must make. I hope he is gaining some weight.

Nan and Dan said...

praying and thinking of you all, hugs

Stevens Family said...

Awe, sweet boy. He's come so far! I hope you find the right doctor to find a long term solution for his hips. Just amazing to see him taking those first steps!