Good Days and Hard Days

Some days and moments are harder than others. Paxton is continuing to work hard and show progress, but it’s not always happening fast enough for him. He really is the most patient person I’ve ever known, but his speech frustrates him. He’s trying so hard and we can’t always decipher what he’s trying to communicate. It’s heartbreaking for us when we can’t guess what he’s saying. The speech app helps, but doesn’t always have what he’s looking for. His spelling is a little garbled so he can’t just type what he’s trying to say.

Last night, he woke up about midnight with a terrible migraine. He was crying so hard I got pretty scared. After 90 minutes and administering every line of defense we have, we bundled up and started to head to the ER. Luckily, after about 10 minutes of driving the pain broke. We decided to turn around and try to get some sleep. He was able to sleep, but my anxiety kept me up. I just wish we had some answers. Hopefully in February we can get a better understanding of what happened.

Today we are taking it easy. I kept him home from school to let him sleep and give his brain some rest. Bray tried to stay home too, but the mean mom I am made him go. 😂

We are very thankful for Paxton’s progression and are staying positive. He works so hard every day. He is such an inspiration. We are adjusting to our new normal. Thanks for all the love.

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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