Skip to main content

One Day at Time

 Every time I get overwhelmed I hear my grandma telling me to take it one day at a time. I miss her so much, but take comfort in knowing exactly what her advice would be because she helped me through most of the tough moments in my life.

Pax is still progressing really well. He surprises us every day with a new movements in his hands or leg. He continues to be positive and work hard. He loves being back at school. We are just waiting for all of his accommodations to be established so I can leave his classroom and allow him to be there without me.

We still haven’t found a speech therapist who can accommodate our scheduling needs of multiple sessions a week and someone who has some experience with stroke patients. The adult SLPs are experienced in stroke recovery but none will accept a 9 year old. The pediatric SLPs have waitlists and most don’t have stroke experience. We are looking at some options in Bozeman right now. We are in a critical time for regaining his speech and it’s frustrating we can’t find someone. 

Bray is having surgery to repair his perforated ear drum on Wednesday. This is the 4th attempt to fix it. If it doesn’t take we will be taking him to Denver too. It has severely affected his hearing which hasn’t helped his apraxia of speech or dyslexia. We need to get this figured out.

We were able to see Kevin and Erin this weekend. It was so nice to spend time with them. They brought the kids some gifts and supplied lots of hugs. The boys were sad when they left. 

Thanks for the continued love and support you have given us. It’s been a crazy journey and I still feel lost most days. Your support helps me have a more positive attitude. 

Janell


Comments

Popular posts from this blog

NASA Day!

 We just had the coolest visitor, former NASA astronaut, Ron Garan! My brother and Amanda did a cameo.com message with Ron for Paxton last week. Ron then reached out to Amanda and said he lived in the area and wanted to meet Paxton. He brought patches from his missions including one that he actually wore in space. He also wrote two books, one children’s book and one adult book that he signed for each of us. We can’t wait to read them! He stayed for about an hour and was so sincere and genuine. We are still in shock I think! Paxton’s day was full of therapies. After his afternoon PT session they said he was doing things he was unable to do during the morning session. He is crushing it! We are still going downstairs for his daily ice cream run. He deserves it after all his hard work. Tomorrow he will have a swallow study to see what he can safely eat and drink. We really want to get the NG tube out as soon as we can. Pax received 3 care packages today. He loves when the volunteers br...

Paxton’s First Health Update

 I’m hoping to use this page for anyone who want to track Paxton’s health progress. I am not great about getting back to everyone’s calls and texts, but I appreciate them more than I can tell you. On Monday, November 29, Paxton came home from school looking and feeling great. Within a half hour of being home he started to panic because he couldn’t talk. I instantly noticed the right side of his body starting to give out. We immediately called 911 and were taken to the ER where he was evaluated by the stroke team. He was diagnosed with a large brain bleed on the left side. We were med flighted to Denver and taken to the PICU. Thankfully, he remained conscious and breathing on his own.  Many (and I mean a lot) of doctors and specialists examined him and ran multiple tests. All we know is that he had a stroke (from the bleed) and it is centered over the part of his brain that produces speech. Yesterday, we were cleared to leave the PICU and were transferred to the in-patient reha...

Good Vibe Friday

We are so thankful for all the support we have received. The Paxton Brown day at school was a huge success. We are so blessed to be part of the Boulder Family. I honestly don’t have words for how grateful I am for everyone who made the day so amazing. My cousins knocked it out of the park with Good Vibe Friday. Paxton loved all the personalized messages and was stunned to see his best friend Clark sending him love. He literally smiled through the entire thing. We even got a shout out from Hawaii. Paxton's therapies went great today. He was able to pedal a bike around the entire floor. He’s still finding his voice, but it’s very patient with me when I try to guess what he’s trying to tell me. Brandon came today and got to see firsthand all the progress Paxton has made this last week. We’ve sent him lots of videos and FaceTimed, but it’s so different to see it in person. Brandon is spending the night at the hospital with him and I’m staying at the hotel across the street tonight. It ...