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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 proud of him! He is going to school through lunch. He would like to be there all day but is happy with the current schedule.

Paxton's next follow up will be in Denver the week of June 6th. He has multiple appointments that week. Braylon is going to come with us and have a specialized MRI done as well. I had a follow up MRI (I get them 1x year for my condition) and they saw an AVM on me. I guess there is a genetic disorder that causes AVMs so we are having further genetic testing done to see if we have this mutation. In the meantime, we will do the MRI on Braylon to rule it out. I am waiting to hear from the specialists if there is something we need to do about mine or if we just watch it.

We are looking forward to summer. We all need some sunshine and a break from our hectic schedule. We are excited to spend time at the cabin and with our cousins. It's been a long winter and we are ready for a change of pace.

I promise to try to keep this blog updated for those of you still following our journey. Thanks for all the love and support. We couldn't have done it without all the love.

Janell

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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

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 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