Paxton's Progress

 The surgeon’s office called today and got Paxton scheduled for next Friday, March 4, to remove the AVM. We won’t be able to remove it with radiation since it has already bled and he’s at high-risk of it bleeding again. It can take up to five years for the radiation to be completely successful. They are concerned about going in to remove it as it is so close to the speech center of his brain, but it needs to be removed. They have consulted numerous specialists and we know we are in the best care possible. He will spend a couple days in the PICU and at least a few days on neurology floor. If he has any setbacks with his speech or possibly movement with his hand we will then go back to the rehab floor. Best case scenario is they can remove the AVM with no complications and no setbacks in his rehab. He’s handling it really well. He’s had a few questions and we’ve been very honest with him about the possible complications. He’s being unbelievably brave and helping me to stay positive throu

 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 more. 

 Sorry it’s been awhile since my last post. I ended up with a stomach bug that left me wanting to sleep a lot.  I’m feeling better today, just have insomnia again. 🤦🏻‍♀️ Pax is doing great. We are still doing 2 hours of school a day. I transitioned out of his classroom this week but remain on campus. I’ve been helping in the library this week which is a nice change of pace. I see a lot  more familiar faces in there and people have been so kind. I had 3 separate people say some very kind words to me that I really needed to hear. I’m still struggling with some depression and anxiety and the kind words mean the world. ❤️ Pax is still doing PT and OT once a week and speech twice a week in the private sector. No school services have started (that could be a whole other post but I’m trying to stay positive). He’s really getting stronger with every session. At PT he is learning to ride his scooter again which is super important for him to master before the weather gets nicer. In OT, he’s le

 We made it home from our trip to Bozeman. We were slightly concerned about the roads, but it was just really windy. We ended up staying at a hotel last night that had pool. Paxton and I were both relieved to know he was able to still swim and float on his back. He had a little problem with kicking so that is something we will work on, but overall he said he felt more “normal“ in the pool. We ordered in Chinese food and went to bed early. This morning we were able to have a visit with the Menascos! It felt so good to see them in person and hope we can see them again soon. At noon, we went to a speech therapy appointment. We were a little nervous knowing we had traveled in hopes of finding the right person, and we did! We absolutely loved her. She actually used to work at the children’s hospital in Denver, and seemed to be a perfect fit personality wise and for the treatment he needs. To say I am relieved would be an understatement. She will see us virtually twice a week, and we will pr