These are the moments. The ones were I have so many thoughts running through my mind...new information converging with what I knew, what I thought I knew, and what I never wanted to know. It's all so stressful, so exhausting. I'm just trying to keep it real as I walk through these days. Some days my outlook is brighter, but today it all feels so heavy.
I did receive an amazing phone call today. The founder of the Infantile Scoliosis Outreach Program called me. This is a national organization founded by a mom whose daughter has scoliosis. Long story short, she was a wonderful wealth of knowledge and she wanted me to learn as much as possible about Early Treatment of Scoliosis using serial plaster casts. This is the method Matt and I have been reading about. She works with Dr. Mehta who founded this program. There are only a handful of doctors who do this procedure, two of whom being the doctor we saw a few weeks ago and the one we are seeing on March 2nd. This leads us to the biggest, most frustrating question...Why wasn't this option brought up to us at the last appointment? We just don't know..perhaps Brady isn't a good candidate for some reason? However many we have talked to, including the woman I talked with today, thinks that he is and that waiting and watching is a terrible idea and that it will lead us down the road to surgery being the only option. The serial casting method involves taking advantage of the pliable young spine and putting a hard cast around the body to guide the spine as it grows. I'm just beginning to read about the actual process and what goes along with it...and honestly, it scares me. I hate the idea of it and don't want to do it. But, if this is what has to be done to give Brady the best shot at a great life, then that is what we will do. (By the way--I think it is no accident that this woman called us today. Wasn't it just yesterday that I asked you all to be praying that God would give us a direction to go in for treating Brady's spinal problems?)
As we wait for our appointment on March 2nd, we just want to knock the doors down to find out the answers to the questions we have. Not too mention that the success of this casting method decreases the older the child gets, ideally the best ages are from 1-2. Brady turns 3 at the end of April, so it seems as though the race against time is on.
I'm going to try and take a deep breath and put all of this aside for tomorrow. Tomorrow's goal is to get a clear scan! We are leaving home around 7:15--arriving at 8:15--scan at 9:15. Please continue praying for Brady's safety and for continued health. And say a prayer that Matt and I will be ready to advocate for our boy! I have our to-do list ready for the nurses and anesthesiologists:
1. Use Propofol for anesthesia as Brady does the best with it.
2. Give Zofran during the scans to prevent Brady from being nauseous when he wakes up.
3. Don't forget to bag him to collect urine during the scans.
4. Don't forget to push the fluids during scans so that we can get a urine sample.
5. Don't forget to run the HVA/VMA test.
6. Don't forget to run blood work.
Seriously, we have to remind them of all of these things. So far, we have never had a scan day where all of the above happens. Someone always forgets or messes up something. Matt and I are ready for them tomorrow! I'll update as soon as we hear anything, probably later in the afternoon.