Paxton's Progress

 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...

First, I want to apologize for the delay in this update. Life, as usual, got stressful. We unexpectedly lost Milton Menasco on March 18. He was more than my cousin’s husband, he was one of our best friends. We are completely devastated and still in shock. My brain is struggling to wrap my mind around all of this, and I feel like I’m just going through the motions of life. Milton and the entire Menasco Family have been huge supporters of Paxton’s journey. We will forever be grateful for his support and good vibes. Paxton is doing great. He still has a few sutures remaining, but he’s healing fast. He’s been crushing PT and OT goals. His PT was just reduced to 2x a month and, I think OT will follow that schedule soon. Speech is still Paxton’s biggest deficit. He continues to do therapy 2x week online. He’s still improving everyday. We are still adjusting to our new routines. We are looking forward to nicer weather and doing things as a family that feel normal. Thanks for all the continued...

 We made it back safely today. We are exhausted but good. We are so happy to be home. Thanks again for all the love. ❤️ Janell

 We just got the good news that we can leave tomorrow (depending on weather). The angiogram went well. It looks like they were able to remove all the abnormal vessels. There’s a chance they can grow back, but this is super rare. He will continue to have MRIs and angiograms to catch it early if that were to happen. The swelling is almost resolved and he’s feeling good. We’ve been here for a week and are ready to go home and see Bray, Dad, and Zumi.  It’s been a long journey. We are so thankful for the entire team we’ve had at the hospital. Not only did they save his life, they did everything to make sure his quality of life would be good as well. They are beyond amazing here. Pax will continue with OT, PT, and speech at home. We know he will continue to crush his goals. Thank you so much for all the love.  Janell

 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...

 We finally got moved out of the ICU yesterday afternoon. As we were being wheeled into his room we saw one of his favorite nurses from last time. He wasn’t our nurse yesterday, but he came to visit twice. This morning, Peter, our favorite CA, came to say hello as he was getting off shift. Then, his favorite nurse, Gretchen, just came to say hi. Our nurse today is one of our nurses from rehab as well. She is amazing and making sure everything is in line for us and getting us all the services we need. One of his PTs from last time visited this morning and will take him to the rehab gym later. He’s still pretty swollen but better than yesterday. He’s talking and smiling a bit more today. We are working on eating and drinking enough to keep the IV out.  The neurosurgeon stopped by morning. He said things on his end were looking good. He has an angiogram on Wednesday, and we are hoping to be discharged after he recovers from that (hopefully by the afternoon that day). Again, we ar...

 We ended up having to stay another night in the PICU, but we get to move to the neuro floor today. He is very excited to get out of the ICU. It’s really bright and noisy here. Yesterday his favorite physical therapist came and helped him get out of bed and stand. He smiled so big when he saw her. Today he was able to walk around the hall a little with PT and OT. He’s slow moving but improving. His face and head are super swollen. His right eye is swollen shut, but he’s not complaining. The majority of his pain is still coming from the cut muscle which makes eating not fun. Brandon is flying home today. Pax was pretty sad to see him go but knows Bray needs dad, too. I presume Bray had a good weekend since his responses to us were limited. 😂 Thanks for all the continued love and support. We don’t have a projected discharge date, but will keep you updated. Janell

 Pax had an ok night. He is super swollen and fairly miserable. They had to do neuro checks every hour which includes shining a light in his eyes. His pain increased about midnight so they gave him morphine. He was at least able to get a little sleep then. They had to access the AVM by going through the temporalis muscle which is making it painful for him to eat this morning. He has ice packs and they gave him some more medicine for pain so we hope he can eat.  He will have a quick MRI at some point this morning. We are hoping to get out of the ICU if the scan looks good and his blood pressure stays stable. We haven’t noticed any setbacks with his hand or leg. His face is drooping a tiny bit more, but it’s hard to tell if it’s from the swelling. His speech is slow (hopefully it’s just from everything he’s been through) but he is speaking. We are so relieved he doesn’t have any major, obvious setbacks. All the love, prayers, and support have been so appreciated. We are lucky to...

 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. 

 We got all the pre op testing and appointments done. We check in at 5:30 AM and surgery starts at 7:30. They expect the procedure to take 8-9 hours. A nurse from the OR should call us about every hour with updates. He will end up with a titanium plate and screws and a decent incision. He was excited to hear that he will have titanium in his body (he apparently knows a lot about it and educated me). After all his appointments, we went to the zoo. It was a gorgeous day and we wanted the fresh air. Brandon is having plane problems and still isn’t here. Fingers crossed he will get to Denver around 11 tonight. It’s been a long day for him, too. Bray got a surprise care package from Kacie, Daniel, Amanda, Milty, Mike, and Lindsey. He also got to hang out with some of his favorite pups while hanging with Kacie. Tonight he will most likely stay up too late watching movies with Uncle Kevin. Thanks to literally all of you. So many people have reached out and we are so lucky to have all of y...

 I’m waking up this morning feeling very blessed. So many people have reached out to support our family this week. Thank you for being such positive influences in our lives. Levi and Kristen have amazing friends that extended to our family this week. We are staying in a gorgeous, comfortable home of his while we are here. The place came stocked with drinks, food, and snacks. Then, we got 2 surprise deliveries last night at the house. My amazing support team of Amanda, Milton, Kacie, Daniel, Lindsay, and Michael had snacks, games, blankets, and even beer and wine delivered! I cried. We feel so loved and know we can get through all this with our support (and the wine of course). Brandon flies in today. We are so thankful Aunt Erin and Uncle Kevin can distract Bray for a few days. Surgery check in is at 5:30 tomorrow. I’m not sure how long it takes, we have a pre op today to discuss all the details. I will keep you updated. I can’t thank everyone enough!

 Anxiety levels are high at the Brown Household. I ended up with one of my epic migraines and was in bed from Thursday night until yesterday morning. I’m feeling a little better now, the neurologist called me in a different combo of meds. Fingers crossed it doesn’t come back anytime soon. Pax and I head to Denver tomorrow. He has pre op testing and appointments on Thursday and surgery is scheduled for Friday at 5:30. Brandon will fly in Thursday afternoon and stay until Sunday as long as all goes as planned. Braylon is going to his Uncle Kevin and Aunt Erin’s for the weekend. He’s even going to get a courthouse tour and sit in on a quick case of Kevin’s. He’s excited about that. Braylon has been struggling with some pretty intense anxiety about Paxton. If you see him in the next few weeks give him an extra hug, or reach out to him on his phone. It kills me that I have to leave him when he’s so anxious, but I know he’s in good hands. Paxton seems to be the least nervous of all of us...

 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 t...

 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...

 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. ...

 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 wil...

 Braylon’s surgery went well. We won’t know if it’s successful for a while. Fingers crossed. He’s feeling good, not much pain, just tired. Hopefully he will be alert enough to do some homework. I’m not telling him that though so there’s no exaggeration of symptoms! 😂 We were able to get ahold of the speech therapist in Bozeman that’s willing to treat Pax virtually 2 times a week. We just need to go for an initial evaluation in person next week. We are going to spend the night at my cousin (The Menasco’s) house. I don’t know if he’s more excited or if I am. I will try to keep my crying to a minimum. We’ve missed them so much and they are a huge part of our support system not only now, but before the stroke. Pax had a neurology appointment yesterday. We are going to try a preventative medication for his migraines. Our options are fairly limited with the unknown etiology of his stroke. He has a quick MRI scan on Saturday to see if enough blood has absorbed for Denver to get good imag...

 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...

 Some days and moments are harder than others. Paxton is continuing to work hard and show progress, but it’s not always happening fast enough for him. He really is the most patient person I’ve ever known, but his speech frustrates him. He’s trying so hard and we can’t always decipher what he’s trying to communicate. It’s heartbreaking for us when we can’t guess what he’s saying. The speech app helps, but doesn’t always have what he’s looking for. His spelling is a little garbled so he can’t just type what he’s trying to say. Last night, he woke up about midnight with a terrible migraine. He was crying so hard I got pretty scared. After 90 minutes and administering every line of defense we have, we bundled up and started to head to the ER. Luckily, after about 10 minutes of driving the pain broke. We decided to turn around and try to get some sleep. He was able to sleep, but my anxiety kept me up. I just wish we had some answers. Hopefully in February we can get a better understandi...

 Wow, this week was busy. Pax went to school Monday through Thursday from 9:00-11:00. He always wanted to stay longer, but would crash when we got home. He brought his Harry Potter Spot It game to play at recess with his friends. He was able to participate in math lessons, which are his favorite part of the day. He had 5 appointments this week as well. All of them went good and we are trying to adjust to our new busy routine.  Today after his appointment, Brandon took him to Scheels to get new shoes and play a few games. He even got a strike with his left hand while bowling there. They then went to lunch and came home to play board games. I was able to nap and take the dog for a walk during this time. Tonight, we ordered pizza and had a family game night. It was so nice to have the 4 of us together laughing again. I cherish my family so much. Braylon wanted to sleep in Paxton’s room tonight, so he is in the hammock under Paxton’s loft bed. I have a monitor to keep an eye on Pa...