Skip to main content

12/8/2021


 Wow, we had a BUSY day. Paxton’s belly is feeling much better and we are starting a new formula in his NG tube. So far so good. He’s been pretty hungry today so he’s been eating more than he has since we’ve been here. He doesn’t complain about the puréed foods. He’s such a trooper. The goal is for him to get enough nutrition through food so we can get the tube out.

They upped his PT to 2 times a day. He gets tired but always gives a thumbs up when they ask if he wants to keep going. He had part of a speech and neuropsych eval today. He did really good. His reading is intact until he gets fatigued, and his memory is intact.

We got a surprise visit fro “Uncle” Daniel today. Daniel is my cousin Kacie’s husband. He happened to driving through Denver at a free moment in our day. We met him outside since visitors are restricted due to Covid precautions. It was the first time Paxton has been outside since this all began. Luckily the weather was decent and we got to hang out for 20 or so minutes.

Paxton also received 2 more care packages. One from our friends the Lindh’s and the second half of the gifts fromUncle Kevin and Aunt Erin. He was thrilled with his new stuffed teddy bear (literally the softest thing I’ve ever touched), blanket (we will be sharing that 😉), stuffed space shuttle with built in nightlight, space socks, and a space encyclopedia!

Speaking of space, an amazing gift came today from Uncle Jess and Amanda. They had Ron Garan, a former astronaut, send Paxton a personalized video message of support. Rob was so touched by his story and just happens to live in the area and asked if he could come visit! We are speechless! We both cried during the video. We are so blessed to have so many people cheering us on.

Tomorrow Paxton has another big day of therapy. They keep adding things to his schedule. He is moving his big toe on the right foot and getting more feeling back everyday. He laughed a lot today. This is the only time his voice comes through and it is the best sound I’ve ever heard.

Bray is having a hard time with us being gone. We are trying to plan for him to come visit me. He can’t come to the hospital to visit which is a bummer. He is spending this next weekend with Uncle Kevin, Aunt Erin, and his cousins. He’s definitely looking forward to that.

My cousins’s band, Milton Menasco and the Big Fiasco are doing an online show in honor of Paxton on Friday! They do live music that we call Good Vibe Friday that is streamed on Facebook, YouTube, and their website. The Menasco’s are a huge part of our lives. Our kids adore each other and we spend a lot of time in person and online with them. If you want to listen to some good vibes on Friday at 7:00 PM MST here are the websites: www.miltonmenasco.com, on Facebook search for the page Milton Menasco & the Big Fiasco, and the Milton Menasco and the Big Fiasco page on YouTube. I couldn’t get the links to show up on here. We are so grateful for my cousin Amanda, her husband Milton, Eva, Nellie, cousin Kacie and her husband Daniel. We are proud to be part of the Fiasco Fam.

Sorry for the long post, just so much happened today! Thanks for your ongoing love and support. As my grandma would say, one day at a time. Love you all.


Janell




Comments

Post a Comment

Popular posts from this blog

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
Post a Comment
Read more

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
Post a Comment
Read more

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
Post a Comment
Read more