New Toys and New Procedures

I have so many thoughts and things to share it's hard to know where to start...

 

We got a mini-Christmas for Wes this week at his physical therapy appointment. Almost 3 months ago we ordered a few adaptive equipment items to help Wes progress and to help us take care of him. Well, after a long process of obtaining letters of medical necessity and waiting on insurance, we got them (yay!). One of the wonderful things about Wes being on Medicaid, is this equipment is covered 100% (double yay!). So we traveled home from Children's with a new medical stroller (kid kart) which also works as a chair at home, a bath chair (since he just won't fit in the infant tub anymore and isn't sitting independently yet), and a stander. I have mixed feelings about these items.

While I am excited to have the tools appropriate to help Wes, there is some reminder of the loss of normalcy while seeing him using the equipment. He looks adorable, as usual :) , and his positioning is so much better and more secure, but he also looks more disabled. It's a reality check that this isn't going to just go away one day. I thought I had already accepted that and was doing well with it but as things change, it seems the emotions have to be dealt with time and time again. Tomorrow will be the first time I take him out in public in his new stroller and as much as they try to make it looks like a stroller versus a wheelchair, it still seems obvious to me.

 

On another new note, Wes is getting Botox for the first time tomorrow. Botox works by partially paralyzingly muscles (well partially when used in appropriate doses) typically to remove wrinkles. Well, researches have found within the last few years, that it can also be used in kids with Cerebral Palsy to relax muscles that have too high of tone. Since CP is a problem with the brain, not the muscles themselves, stretching only helps loosen tight muscles to a certain degree. The real problem is the brain incorrectly telling the muscles to flex rather than the muscles being tight on their own. Besides resulting in a lack of meaningful functionality, consistently flexed muscles begin to shorten along with their tendons and the opposite muscles and tendons lengthen. So not only is it difficult to function with very tight hamstrings, it can also do permanent damage to the muscles, tendons, and even bone structures (wow I feel like I have learned a lot of medical stuff in the last 18 months).

So, after over a year of consistently stretching Wesley's hamstrings, we are trying his first round of Botox in them tomorrow. Despite our best efforts, his hamstrings are still tight and are impeding his ability to sit on the floor and stand with straight legs. Every person reacts differently to the procedure and the effects last for at most 4 months. So, we're trying a small dose and will see how he does with it. I'm hopeful that it will help but won't make him too relaxed. I'm a little nervous to try something new but I'm trying to focus on being hopeful. I keep reminding myself that if we don't like the results, we only have to live with it for a few months and then we never have to do it again. Here's to hoping (and of course praying) things go wonderfully.

 

I leave you with a few new adorable photos of our precious boy enjoying finger painting.