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

Post a Comment

Popular posts from this blog

Making Progress

 About 15 minutes ago I was on the phone with my cousin Amanda, and Pax started to get excited and showed me he could lift the upper part of his arm! He was trying so hatrd, his teeth were clenched and his face was red but he did it! He also got to say “hi” and “I love you” to his cousins Eva and Nellie. His day started off with another migraine, but we were able to get it under control by 10:30. He then got his feeding tube out. 🎉 He’s on a 3 day strict calorie count and if he can get enough calories and fluid in, we can keep it out. I caught him taking selfies with his ipad after it was removed. So exciting. After working so hard at therapy, we went for our daily ice cream. This definitely helps with the calories!  Paxton receive care packages from his friend, Ethan and his family, his friend Cooper, The Menascos, and his grandparents. He is definitely feeling loved. I was able to get out and walk today. The wind was freezing but the fresh air felt good. I’m so grateful to ...
1 comment
Read more

Bittersweet Goodbyes

 Well, we made it through the last day of therapies and coordinating home treatments. It was really hard to say goodbye to everyone who helped Paxton not only survive, but progress so quickly. We shared a few tears with a few of the therapists and nurses today. My dad and Krissi made my life so much easier today. They got us boxes and a few things I needed to travel home. Krissi and I packed up all our stuff and they took it to be shipped to us. We were then able to have our last ice cream date (until next month).  Pax had a lot of final evaluations at all therapies today getting ready to transition to outpatient work. He is exhausted but so ready to go home. I am slightly nervous about getting home tomorrow because there is a winter storm coming into Denver and we are already getting warnings of possible delays and cancellations. All we want to do is get home.  We will continue to keep everyone updated on progress and the results of future appointments. Today it sounded ...
Post a Comment
Read more

Familiar Faces

 We finally got moved out of the ICU yesterday afternoon. As we were being wheeled into his room we saw one of his favorite nurses from last time. He wasn’t our nurse yesterday, but he came to visit twice. This morning, Peter, our favorite CA, came to say hello as he was getting off shift. Then, his favorite nurse, Gretchen, just came to say hi. Our nurse today is one of our nurses from rehab as well. She is amazing and making sure everything is in line for us and getting us all the services we need. One of his PTs from last time visited this morning and will take him to the rehab gym later. He’s still pretty swollen but better than yesterday. He’s talking and smiling a bit more today. We are working on eating and drinking enough to keep the IV out.  The neurosurgeon stopped by morning. He said things on his end were looking good. He has an angiogram on Wednesday, and we are hoping to be discharged after he recovers from that (hopefully by the afternoon that day). Again, we ar...
Post a Comment
Read more