Surgery Scheduled

The surgeon’s office called today and got Paxton scheduled for next Friday, March 4, to remove the AVM. We won’t be able to remove it with radiation since it has already bled and he’s at high-risk of it bleeding again. It can take up to five years for the radiation to be completely successful. They are concerned about going in to remove it as it is so close to the speech center of his brain, but it needs to be removed. They have consulted numerous specialists and we know we are in the best care possible. He will spend a couple days in the PICU and at least a few days on neurology floor. If he has any setbacks with his speech or possibly movement with his hand we will then go back to the rehab floor. Best case scenario is they can remove the AVM with no complications and no setbacks in his rehab. He’s handling it really well. He’s had a few questions and we’ve been very honest with him about the possible complications. He’s being unbelievably brave and helping me to stay positive through all this.

I will keep the blog updated as we go. Thank you for your support. It helped me stay strong. I’m a mess of anxiety but trying to keep it together for the family. We are blessed to have so many people who care for us. ❤️❤️❤️

Comments

Long Overdue Update

I'm not sure if anyone even checks this anymore since I kind of stopped doing updates. I apologize for the gap in time. To be honest, I've been struggling with some depression over Milton's death and PTSD about Paxton. I am working on both of these and hoping to start feeling better. Enough about me. Paxton is doing AMAZING! He is done with PT. He crushed all his goals and they said there wasn't much more they could do for him. He is still in OT 1x week, mostly working on fine motor skills with his right hand. He currently does any writing or drawing with both hands. He continues with speech therapy twice a week. Speech is still his biggest deficit, but he has come so far. He struggles with bigger words or saying longer sentences. He communicates great and everyone knows what he is saying. School is going great. They just completed state-wide testing and he surpassed all the goals that were set at the beginning of the year before his stroke. We are all so incredibly p

Update

First, I want to apologize for the delay in this update. Life, as usual, got stressful. We unexpectedly lost Milton Menasco on March 18. He was more than my cousin’s husband, he was one of our best friends. We are completely devastated and still in shock. My brain is struggling to wrap my mind around all of this, and I feel like I’m just going through the motions of life. Milton and the entire Menasco Family have been huge supporters of Paxton’s journey. We will forever be grateful for his support and good vibes. Paxton is doing great. He still has a few sutures remaining, but he’s healing fast. He’s been crushing PT and OT goals. His PT was just reduced to 2x a month and, I think OT will follow that schedule soon. Speech is still Paxton’s biggest deficit. He continues to do therapy 2x week online. He’s still improving everyday. We are still adjusting to our new routines. We are looking forward to nicer weather and doing things as a family that feel normal. Thanks for all the continued

Brave Boy

We ended up having to stay another night in the PICU, but we get to move to the neuro floor today. He is very excited to get out of the ICU. It’s really bright and noisy here. Yesterday his favorite physical therapist came and helped him get out of bed and stand. He smiled so big when he saw her. Today he was able to walk around the hall a little with PT and OT. He’s slow moving but improving. His face and head are super swollen. His right eye is swollen shut, but he’s not complaining. The majority of his pain is still coming from the cut muscle which makes eating not fun. Brandon is flying home today. Pax was pretty sad to see him go but knows Bray needs dad, too. I presume Bray had a good weekend since his responses to us were limited. 😂 Thanks for all the continued love and support. We don’t have a projected discharge date, but will keep you updated. Janell

Paxton's Progress

Search This Blog