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 proud of him! He is going to school through lunch. He would like to be there all day but is happy with the current schedule.

Paxton's next follow up will be in Denver the week of June 6th. He has multiple appointments that week. Braylon is going to come with us and have a specialized MRI done as well. I had a follow up MRI (I get them 1x year for my condition) and they saw an AVM on me. I guess there is a genetic disorder that causes AVMs so we are having further genetic testing done to see if we have this mutation. In the meantime, we will do the MRI on Braylon to rule it out. I am waiting to hear from the specialists if there is something we need to do about mine or if we just watch it.

We are looking forward to summer. We all need some sunshine and a break from our hectic schedule. We are excited to spend time at the cabin and with our cousins. It's been a long winter and we are ready for a change of pace.

I promise to try to keep this blog updated for those of you still following our journey. Thanks for all the love and support. We couldn't have done it without all the love.

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...

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 ...

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...

Paxton's Progress

Search This Blog