With the new year in full swing, we are slowly easing back in to our routines. Gage went back to school on Monday, my work hours have started back up and Evan returns to work for meetings today. As the weeks continue, we’ll have other appointments for Gage added back in to our schedule. Routines can look a little different in a special needs family. Here’s a glimpse at what 2018 holds for us.
Later this month, Gage will return to Missouri State’s Clinic for feeding therapy twice a week. He’s already met and worked with the student who will be helping him this semester, so hopefully we can pick right up where we left off and continue making progress with tolerating different textures and one day drinking from a straw. Those therapy sessions will be longer this semester as we also start exploring different communication devices and working with those. I anticipate it being a long process to find the best fit for Gage, but he’s definitely surprised me before, so we’ll have to wait and see.
For the month of February, Gage will go to intensive occupational therapy 5 days a week for 3 hours a day. We did 3 weeks of intensive PT in the fall and have really seen some wonderful results from it. The biggest thing I’ve noticed is his stability when sitting independently. 
Now that the OT counterpart is getting started at Mercy, I’m excited to see how it can help Gage. It seems like good timing, as what they work on there might impact how successful he is with a communication device.
In March, we’re so fortunate that Gage and Evan’s spring breaks are the same week! I wish we were planning an escape to a tropical destination where we’d enjoy a week without a worry or care. While I’ll never give up on my favorite hobby of planning fantasy vacations, that’s not looking too promising. Instead, we’ll start the week by travelling to St. Louis Children’s Hospital to consult with a neurosurgeon, Dr. Park, about a procedure called Selective Dorsal Rhizotomy, or SDR, which involves cutting nerve fibers in the spinal cord. It’s used to treat spastic cerebral palsy (stiff, tight muscles) which is Gage’s type of CP. However, I’m not sure if he’ll be a good candidate since he is affected all over and not just in his lower extremities, which from what I’ve read is when it’s most effective.
The more I learn about different treatment options, the more I realize just how many there are! We’re reaching a point where Gage could possibly benefit from pursuing some treatments that when we originally discussed them with his doctors seemed so far down the road we didn’t have to think about them at the time. It was easier to hear that we needed to wait until he was bigger or older to consider it, and keep it in the back of my mind as a way to have hope for the future, but not really focus on the details. Now those details are staring us in the face and it’s scary. I have a confession. There’s a part of me that doesn’t want Gage to be a good candidate for SDR and that way Evan and I aren’t the ones faced with the decision about what to do. The choice is made for us and it’s easier that way. But I also feel like as his parents, we need to do all we can to help Gage have a shot at the best possible outcomes. That may or may not mean pursuing surgical treatment, but at least we should learn as much as possible and make the most informed decisions we can. So we’re in the information gathering stage. I’m really trying to focus on taking it one step at a time and not being overwhelmed by fear.
As we kick off this year and get back to our routines, no matter how out of the ordinary they may be, I’ll choose to anticipate great things to come in 2018. We might even try to squeeze in a short spring break trip after the doctor’s appointment to give us something to be excited about. Instead of dreading the things on our schedule, I want to look forward to the possibilities. God has been ever faithful through our journey and I know He will continue to be. As always, I’m so thankful for the love, prayers and support of our village. Thanks for being there for us in so many ways.