So it was just last week I shared with you all about Brady's disappointing meeting with the Orthopedic Surgeon. You remember, "Sorry, there is nothing we can do right now. Let's wait and see, come back in 6 months. Remember, you are going to notice his spine changing more, but don't panic, just come back in 6 months."
To say that this didn't sit well with Matt and I is a huge understatement. If there is one lesson about having health issues that I hope people remember from Brady's story it is this: Always rethink what you are told by doctors. Most of the time they are right about things, but some of the time they don't know it all. It is okay to question authority...it is okay to seek out a 2nd opinion...take advantage of the internet and read everything you can. We are continually amazed by the information out there waiting to be found.
Matt has been reading many, many studies about scoliosis and kyphosis. We are still finding no studies about kids like Brady, there just aren't any out there. So, we have focused on studies dealing with children who have structural scoliosis, which means it is not a birth defect---he is developing this condition because the surgery caused instability. There is even less info out there about pediatric kyphosis. Matt decided to email a couple of experts including one chiropractor and two PTs, all from different parts of the country. He had read some promising studies about bracing and casting. We immediately got responses from all of them, two of them even calling us on the phone.
One wonderfully kind and approachable chiropractor from Massachusetts called us last night and told us that he wanted to help. Although he said that Brady could not be a candidate for his specific type of therapy, he wanted to try and help us find someone else who could give us answers. He contacted two doctors, one in Arizona and one in Germany, both considered leaders in the field of pediatric scoliosis. Their names are all over the research and are certainly considered cutting edge. He promised me last night that he would contact them and get back to us in a few days or so. Well, he called us at home again tonight. The doctor in Germany had never worked with a child like Brady, his only idea was some technique that is only used in Europe. The expert in Arizona recommended a casting technique. Basically, under anesthesia the doctor's manipulate the spine into a better position, and then cast it into that position. Then the casts a changed every 3-4 months to accommodate growing. Again, this process has shown promise with scoliosis, and not specifically the degree of instability Brady has.
Now here is the kicker...there are a handful of doctors that do this in United States. One of them being....the Orthopedic Doctor we have been seeing!!!! I have NO idea why this option was not even discussed last week. We weren't aware of it at that point, and now feel like we have literally gone in a circle this week only to lead us back to where we started. The wonderful doctor in Mass. is going to continue checking into a few things for us, including putting us in touch with pioneer of this casting technique, the woman who trained our doctor in Rochester.
Here is where we are: We have an appointment set up for March 2nd to see the OTHER orthopedic doctor within the practice in Rochester. He works very closely with the doctor we have been seeing, and he also does the casting procedure. My pediatrician suggested we try him as he is very approachable, friendly, and positive. We are trying really hard to get into this appointment sooner as 1 1/2 months seems way too long when we are talking about Brady's spine.
We really need your prayers! We feel like we are out on a limb again, snubbing our nose at the advice we have been giving. However God gave us this boy and we are going to do everything, absolutely everything, to make sure he gets whatever help he needs to live his best life. Please join us in praying:
That God will lead us to just the right person that will have an idea for how best to treat Brady.
That whatever intervention we try will be successful and as minimally invasive as possible.
That precious Brady will not suffer during this process and that he will continue to thrive!
That Matt and I will stay strong physically, spiritually, and emotionally as we continue to advocate and research on behalf of Brady.
That our doctors here at home will keep an open mind and not be too entirely offended that we have done all of this behind their backs (lots of prayer here ;)
Oh, and one last day to email me if you want to be included in the January 21st project. Anything you want to share would be great!