Week 1 break down.

We have finished week one of our in-home intensive and it went great! Jonah successfully took about 5 fully independent steps. This was very exciting! In a typical kiddo, once they figure out how to do it and that they can, they usually take off. Unfortunately, this isn’t the case with Jonah. His independent steps are heavily assisted and facilitated in order to even happen and is very much something he hates! He screamed and cried the entire time. So, while he may be able to do these steps physically, it’s not something he will do. This is in part due to neurological issues. I watch as he tries to move his leg forward to take a step and his little leg is shaking and he is crying and screaming, and his leg just won’t budge. It almost looks like it’s stuck to the ground, and he is trying his hardest to lift his leg, but it won’t move. His brain struggles to organize the information and process what the next move is. To move his feet and leg step after step one foot in front of the other. Walking is sensory overload to him and more than he can process and execute on his own right now. He also has the added difficulty of lack of proprioception. What that means is that he cannot make heads or tails of where his body is in space. So, for example, we can walk around and know when to step down off a curb, or if we are going to bump into something or the incline of a walkway and how to adjust our movements to accommodate the terrain. He cannot do that. This makes walking without holding on to something, an event that is just downright terrifying. He feels unsafe and as if he is going to fall with every step. All this together would understandably make independent walking something you’d want to avoid and resist at all costs. 

This past week has been emotional. He is trying so hard to walk and being so brave, but this is also so hard on him. It’s also very hard on us to watch this unfold. It takes a mental toll on everyone but at the same time seeing him take these steps (even though they are very prompted) shows us that these therapies are getting the gears in motion, he just needs so much practice. We are already seeing improvements but know he will need so much to keep this going. This is why we are fundraising for these therapies. This is our why. 

We see the potential, he is trying to make these gains, the foundation is there, he just needs consistent practice and hands on treatment to make walking a reality for him. He needs to be conditioned to the movement, and his brain needs repeated practice to become accustomed to this and be able to start doing this on his own. 

This is the difference in weekly therapy and intensive therapy. It’s direct, concentrated, and specific treatment to make those improvements.

His regular OT and PT are so dedicated to him that they both came this week on their own time to observe the intensive therapy and learn how to help carry over some of these modalities into his weekly sessions. This will hopefully help him maintain any improvements he makes so we don’t lose the progress made. However, he will still need more intensive therapy even after this. 

It’s very rewarding though to see how much progress is made with each one we do though! These intensive are amazing for kids like Jonah and I will forever advocate for these forms of therapies in conjunction with regular traditional therapies. It’s really a perfect recipe to see results and maintain it. 

We are heading into our second week, and Jonah has come down with a cold so our prayer request this coming week is that he will get to feeling 100% very soon and be able to put in his best efforts for the week. I also want to ask that you pray for him to stay as regulated and calm as possible. With the overwhelming frustration of the therapy, he is requiring a lot of hands-on support to keep him from biting or hitting himself, myself, or the therapists. That in itself can be a lot to mange.

Please continue to keep his devoted team of therapists in your prayers, and for a smooth second week emotionally, mentally, and physically for us all. 

Also, a huge THANK YOU to my mom and mother-in-law for swapping out and making sure I have someone here each day to help with childcare and supporting myself, Jonah and the girls while Casey is working! 

We love you all,

-The Mabes