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

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...

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...

Denver

Yesterday Pax had his MRI and angiogram. They found a small AVM that caused the bleed. This abnormal vessel will need to be removed. It happens to lie right on the pronunciation speech center of his brain. There is a risk of him have temporary or permanent set backs in his speech with the removal. The neurosurgeon is consulting with other specialists to determine the best way to remove it. The vascular neurosurgeon said it’s close to the surface, which is good. We aren’t sure when the surgery will take place, but it doesn’t sound like this trip. I have a mixture of emotions. On one hand, I’m glad we know the cause and it can be fixed, but the risks are scary. Of course we’ve gotten ice cream since we’ve been here. He was thrilled to see they had Cookie Butter this week. We have an appointment with the rehab doctor today so I’m sure we will be getting more ice cream today. Thanks for keeping us in your thoughts and for all the love and prayers. I will update the blog when I know mo...

Paxton's Progress

Search This Blog