…gets the grease.
A few nights ago I woke up in the middle of the night with the words “Swash brace” in my mind. I quickly booted up the ipad and looked it up again, and the moment I read up on the swash brace I knew that was the answer to Nathan’s hip problems. I had mentioned the Swash to Nathan’s orthopedic doctor whom we saw about a month ago, but he said no.
So I started squeaking – I called the doctor’s office and started leaving messages. On day 3 of leaving 2 messages every day, I decided to call Nathan’s orthotist, who fitted him with the Hart Walker. I asked him about the swash brace and he was in complete agreement with me. He felt that Nathan would greatly benefit from the swash brace.
Also, the doctor had prescribed a DAFO that was fixed and had no hinge, preventing movement of the ankle and foot. I told him I didn’t agree with him at the meeting, but he insisted. So I asked Jason the orthotist about this DAFO and he once again agreed with me on making a hinged DAFO for Nathan. So I squeaked again mentioning to the doctor that Nathan’s orthotist agreed with my treatment plan. By day 5 I’d spoken with his assistant, posited my theory for using the swash and hinged dafo, and gotten an agreement from her and the orthopedic doctor.
Today, we went to see the orthotist and Nathan was measured for his SWASH brace and his hinged DAFO’s. He should be receiving both of these in 2-4 weeks. I am super excited and think this will give Nathan more freedom of movement!
Sometimes you have to be the squeaky wheel and do your own research or doctors may not make the best choices for your children.
I asked Jason the orthotist about why the doctor hadn’t devised this treatment plan, how come I figured it out even though I am not medically trained. He told me it’s because the doctors always work towards the lowest common denominator. The doctor didn’t think Nathan had any potential for movement so he simply created a treatment plan devised at keeping him stretched. He wasn’t concerned about function. He didn’t see potential for functional movement in Nathan. But I see potential in him so I am glad I have no problems being the squeaky wheel.
BE the squeaky wheel…there’s no shame in that!
Great post! You are so right and Oh my goodness you are a fabulous squeaker–wish I had your guts!
Keep squeaking! I am an Adapted PE teacher I see every day that squeaky parents get more for their kids and the kids are better for it. For some reason many dr.s and therapists are more concerned about alignment than function! Look into MOVE program and the Kidwalk Dynamic Mobility Device.
Good for you. You are awesome. It’s so good to read this as a reminder of how much we know what is right for our kiddos. Rock on.
Praise God that Nathan has you!
You DEFINITELY have to be the squeaky wheel in your son’s behalf. No one else knows him, loves him, cares about his well being, or understands him the way you and your family does. He is not another name on a list with the next item to try and check off. GOOD FOR YOU! ((HUGS))
I just wanted to give you a heads up that I added Nathan to my Ongoing Prayer List that is highlighted every Sunday on my blog. It links back to you. http://www.diamondpotential.com
I love being the squeaky wheel. Loved it when I diagnosed Cj and ordered the test with Childrens Hospital! I was dead on. I do not love the diagnosis though!