New Discharge Date

We got great news at our meeting today, we are headed home January 5th! They moved the date by a month in the matter of 2 weeks. His progress is so miraculous! We will be back here in February to have more imaging to see if we can find the cause of the bleed. He may still need surgery at that point if they can see a vessel that needs repaired. We will deal with all that when the time comes. In the meantime we will focus on rehab. He will go to school part time at first and concentrate on outpatient PT, OT, and speech. We are thrilled to be going home, but I am anxious about not being surrounded by our incredible medical team.

My dad and Krissy are coming next Monday to help us pack up and get ready to go. Pax is so excited to show papa all of his improvements. He was still in the PICU when my dad was last here.

Brandon and Bray made it home, finally. Their flight was delayed numerous times today, but they are home safe and sound.

I was able to run across the street and have coffee with my friend, Andrea, who I haven’t seen since high school. It really helped to get out of here for a bit and catch up with her. I’m so grateful for everyone who has reached out.

We are definitely counting our blessings and not taking any moments for granted. We say at least 3 positive things that have happened in a day, even on hard days. Paxton’s positivity is contagious. We can’t thank you all enough for everything.

Good night 😴

Janell

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

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