An Open Mind
A parent always has their child's best interest at heart, but sometimes we need to open our minds to creative possibilities.
Wes just had a round of Botox shots for his tight calf and I had an interesting conversation and realization after the visit. We had to get the shots from a new doctor we haven’t seen before because he’s one of the only guys in town who does pediatric Botox shots. He was friendly enough, explained what we were going to do, how to position Wes for the shots, how much he was going to give him, and the stretching regiment afterward.
None of this was particularly new to me as Wes has had a round of Botox shots before. What I’m learning, the further I get into this journey of special needs, is that I have to keep an open mind about certain treatments. About a year ago our PT at the time had started mentioning Botox shots to relax Wesley’s tight calf and I was four-square against it. I pictured a huge long needle and a traumatic operation to give him this Botox and honestly I try to avoid all stressful and traumatic situations when it comes to Wes if at all possible.
We then moved therapies and had a visit with the Shriner’s orthopedists who highly recommended the Botox procedure/treatment… explaining that it was as simple as giving an immunization and very effective. OKAY! I finally agreed and the doctor had been right, it was simple and it did help. This time we found someone local to give the Botox shots and our conversation got me thinking and adjusting my thinking about treatments for Wes again.
I asked the doctor after he gave the shots about signing a prescription for new orthotic shoes for Wes to help him stay flat. He signed away no problem but asked if I’d considered casting. NO WAY I quickly responded, I don’t want Wes unable to walk or be in water for a month or two… that’s more detrimental to his development I explained that actually getting him down off his toes.
The doctor proceeded to explain that it wouldn’t have to be that way for Wes if we did casting. He explained that it could be a two week cast, not a six week cast… and that the orthopedic doctor can make a cast that would still allow Wes to walk so he wouldn’t lose any time or development in the process. At first I was still pretty closed off to the idea, but the doctor kept on. He explained that we need to make sure Wesley’s tibia stays straight and forward. Even knowing we’re going to do a surgery when Wes gets older to lengthen his tendons, keeping his tibias straight will make that surgery MUCH easier and better for him in the long run.
Now I was listening. Anything to make Wesley’s future a little easier is extremely valuable to me and I had been wondering why we were going through so much work and effort to get Wes off his toes if he would eventually have a corrective surgery to fix it in the future. Why torture him for years if a surgery is inevitable anyway. Now I had an answer, and a goal!
And so I promised the doctor we would THINK about it. He claimed it couldn’t hurt to try a round (not sure that would be true if you asked Wesley), that it really works for some kids but is less effective in others. It can’t hurt, I keep thinking. I may try a round of the casting during the winter then, when Wes is less mobile and not in the water as much. I need to do a little more research and see if what he said is actually true (and not exaggerated at least), but the whole experience at least got me thinking. I need to be a little more open-minded and do more personal research in the future regarding treatment options for Wes. It’s all so scary, but knowledge is power and very much a key to Wesley’s future and I can’t afford to be stubborn or scared for his sake!
Written by Kristyn Lindsey, special needs advocate and parent of a special needs child.