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

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...

Quick Update

He’s done. Took about 10.5 hours. It was MUCH more complicated than anticipated. They say he's doing good. We are headed up to the icu now to see him. Thanks for all the support. I will update more tomorrow.

Christmas Miracles

We have some great news…Paxton started walking on his own! He literally went to PT in the morning being helped by his therapists and a hour later came walking back without assistance. He is literally blowing everyone away. So many people have told me that he is the hardest worker they’ve ever had. We are so incredibly proud of him. We kept the secret from Brandon and when he got here tonight, Paxton got up from his wheelchair and walked to give him a hug. Lots of happy tears were shed. He fatigues really quick and still has some work to do to perfect his stride, but he’s crushing it! I tried to upload the videos but I can’t get them to work. I will keep trying. My favorite response is from Eva and Nellie. They sent an awesome video in response, but I can’t get it to upload either. Grrr Bray and Pax were so excited to see each other. They hugged and were so sweet to one another. Bray and I cried as soon as we saw each other. I have a feeling these next few days will go by much too ...

Paxton's Progress

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