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. ❤️❤️❤️

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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...

Feeling Better

Pax is doing much better today. His silly personality is back. ❤️ He’s still a little swollen but much better. His jaw hurts a little less so he’s eating more. He crushed it at PT yesterday, and can’t wait to go back to the rehab gym later today. His angiogram is first thing tomorrow morning. He hates being sedated and can’t get up and move for 4 hours after the procedure. They will keep us overnight tomorrow for monitoring, and if all goes well he will be discharged Thursday. We had an appointment with the Acquired Brain Injury Clinic on March 24th and they were able to move it to this Thursday. This is a huge relief, the flights are exhausting and expensive. I don’t think we have to come back for 3 months…wahoo! He’s seriously so brave, strong, and had such a positive attitude. His attitude is the only thing that’s kept me so positive. I’m beyond proud of him and am striving to be more like him. Thank you all so much for all the support. We are so grateful for each and every per...

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...

Paxton's Progress

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