Skip to main content

New Discharge Date

 We got great news at our meeting today, we are headed home January 5th! They moved the date by a month in the matter of 2 weeks. His progress is so miraculous! We will be back here in February to have more imaging to see if we can find the cause of the bleed. He may still need surgery at that point if they can see a vessel that needs repaired. We will deal with all that when the time comes. In the meantime we will focus on rehab. He will go to school part time at first and concentrate on outpatient PT, OT, and speech. We are thrilled to be going home, but I am anxious about not being surrounded by our incredible medical team.

My dad and Krissy are coming next Monday to help us pack up and get ready to go. Pax is so excited to show papa all of his improvements. He was still in the PICU when my dad was last here.

Brandon and Bray made it home, finally. Their flight was delayed numerous times today, but they are home safe and sound.

I was able to run across the street and have coffee with my friend, Andrea, who I haven’t seen since high school. It really helped to get out of here for a bit and catch up with her. I’m so grateful for everyone who has reached out.

We are definitely counting our blessings and not taking any moments for granted. We say at least 3 positive things that have happened in a day, even on hard days. Paxton’s positivity is contagious. We can’t thank you all enough for everything.

Good night 😴 

Janell







Comments

Post a Comment

Popular posts from this blog

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 fru...
Post a Comment
Read more

Feeling Better

 Pax is doing much better today. His silly personality is back. ❤️ He’s still a little swollen but much better. His jaw hurts a little less so he’s eating more. He crushed it at PT yesterday, and can’t wait to go back to the rehab gym later today. His angiogram is first thing tomorrow morning. He hates being sedated and can’t get up and move for 4 hours after the procedure. They will keep us overnight tomorrow for monitoring, and if all goes well he will be discharged Thursday. We had an appointment with the Acquired Brain Injury Clinic on March 24th and they were able to move it to this Thursday. This is a huge relief, the flights are exhausting and expensive. I don’t think we have to come back for 3 months…wahoo! He’s seriously so brave, strong, and had such a positive attitude. His attitude is the only thing that’s kept me so positive. I’m beyond proud of him and am striving to be more like him. Thank you all so much for all the support. We are so grateful for each and every per...
Post a Comment
Read more

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