Paxton's Progress

 Pax had a long day. We are trying to get all the needed data to transfer to the schools district to get an IEP in place, so he spent the morning with neuropsych testing. He then went to school group, did the arm bike for 45 min, then speech, then PT and OT. He is exhausted. When he’s fatigued his speech is the first thing to get jumbled and he gets super frustrated. We are planning on an early bedtime tonight. I talked to the neurosurgeon today. Here’s the plan…we will have a quick mri in Billings at the end of January/beginning of February to make sure the blood is gone. When it’s gone, we will come back here for a more thorough mri and angiogram. The possibilities from that are: 1. They find no cause and do nothing. 2. They find a cause but don’t know what to do about it so they consult with more specialists. 3. They find an AVM and correct it with surgery (drilling into the skull). They want to avoid this option if at all possible because it’s right over the speech center of the br

 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 wit

 The doctors and therapists continue to be amazed by Paxton. The can’t relate his MRI pictures to how he looks clinically. His hemorrhage was very large and will take at least another month until we can actually see what’s under there and find the potential cause. Pax is super interested in learning about his stroke and the effects of different parts of the brain. They have printed out a bunch of his images from the MRI to explain it to him. He loves looking at all the different views. He said I could share one of these images so people could see what happened. He also hopes it helps everyone understand why he speaks differently and walks a little uneven. There’s rumors we are getting out soon and he’s nervous to see people for the first time. As you can see the bleed is very large and is right over the speech center of his brain. He will continue therapies at home, his recovery is far from over. We are so proud of his hard work and determination. We should know by tomorrow what the ne

 Well, Brandon and Bray’s flight got canceled about a hour prior to boarding. They had to wait at the airport for over 4 hours to get their luggage back. They are hanging out at the hotel tonight. I’m going to take Bray to the zoo tomorrow since we get another day together. They couldn’t get another flight home until Tuesday. Pax had PT, OT, and speech today. They don’t give him a lot of time off around here. We are back to the full schedule tomorrow. He’s getting more movement in his right arm, his walking is getting more steady, and his speech is clearer everyday. He’s back to a normal diet, just has to eat slow.   I taught him how to play Chinese Checkers today and we watched some movies. He’s feeling great and is in good spirits as always. We’ve had lots of giggles and snuggles today.  Thanks for all the continued support. We love you all. Janell

 Our Christmas looked a little different than we had pictured a month ago, but I’m so thankful for the day we had. Bray was allowed on the floor for a visit again today, we had cinnamon rolls for breakfast, opened gifts from Santa, and other Christmas gifts that were sent here. We took Bray on a tour of the hospital and hung out in Paxton’s room. After our visit, Bray and Brandon got packed up to leave in the morning. I can’t believe our weekend is almost over. 😢 Tonight I’m hanging out with Braylon at the hotel. We are watching football and relaxing.  A nurse spilled the beans tonight saying they are moving our discharge date up since Pax is doing so well. We should have a new projected date at our meeting on Tuesday. Our current discharge date is February 8. We obviously want to come home earlier, but also know this is the best place Pax can be for this crucial recovery period. We trust the judgement of our medical team. I hope everyone had a good holiday weekend. We are beyond bles

 Merry Christmas Eve! Paxton made gingerbread houses at his group session today, they looked great! You’d never know he made them with his left hand. He said he made Flathead Lake. We had such a blast there this summer.  Bray and I went to a Denver Nuggets game last night and went to the aquarium today. We’ve really enjoyed our time together and tried not to think about him leaving on Sunday.  Bray was able to come to the hospital for his monthly sibling visit tonight. The boys played Xbox and truly enjoyed their time together. We ordered Chinese takeout which took 3 hours to get here, but it was really good. We played Trouble and I did some laundry.  Pax and I set out cookies and milk for Santa. He’s just as excited for Christmas this year as he has been for all the previous years. Being here hasn’t changed his attitude at all. I need to take some life lessons from this kid. Tomorrow Bray gets to come back to the hospital for his holiday visit. We are having cinnamon rolls for breakfa

 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 fast

 Tomorrow Braylon will be here! We will probably have to do a quick outside visit when they get to town, but hoping to get him inside Thursday and Saturday. Sounds like we got the visits approved, but are waiting to hear back on the times/days. Pax had fun at school group today. They did a STEM project making Christmas trees out of Dots candy and toothpicks. He’s learning to write with his left hand and is doing great. We received 2 packages today. The one from Aunt Kristen and Uncle Levi were some of our favorite books we read together. They sent us the whole series, we are super excited. Great Aunt Pam sent a bunch of Christmas cookies for the staff that’s been taking care of us. All the nurses and therapists were so grateful. Paxton continues to blow everyone away with his quick progress. He listens to everything they tell him and is the hardest worker they’ve seen. I’m so incredibly proud of him. We are beyond excited to have our family together for the first time in almost a month

 We didn’t get the report back for the MRI until this morning. The neurosurgeon said there is still a “massive” amount of blood that his body needs to resorb which takes time. It didn’t look like there was any new bleeding. There is an artery that they think is possibly malformed from birth that could  have been the cause of the bleed, but they still can’t see it clearly with the remaining blood. We will do follow up imaging in the future to get a better look. I’m struggling with migraines and looking at screens hurts, but I wanted to give that update. Thanks everyone for your love. Janell

 Not a whole lot happened today. I took a nice nap while Brandon and Paxton hung out. We went on our daily ice cream run and we enjoyed it outside in the sun. It was beautiful here today. Pax has been getting a lot of headaches on the left side. He has a history of migraines but is indicating that these feel different. They are going to do a MRI tomorrow just to make sure nothing has changed. They aren’t overly concerned, but don’t want to miss anything. He has to be sedated and the appointment isn’t until 4:00. He’s going to be one hungry boy when he wakes up. Tomorrow is his first day of school group. He’s super excited. A couple of kiddos discharged this weekend so I’m not sure how many there will be in the class. Bray had a blast at the rodeo and spending time with my family. Today he spent the day at his friend Caiden’s house. We are very fortunate to have so much help. Thanks again for everyone’s support and generosity. We appreciate all of you.  Janell

 Pax had a good day. He had his group therapy and made Christmas cookies. We were able to break them into small enough pieces for him to eat some. He had a blast with the other kids on the floor.  Brandon took him on his daily ice cream run while I took a quick nap. They explored outside a little bit as well. We hung out the rest of the day reading and watching football. The weekends are much quieter around here. Bray is at the Chase Hawks rodeo tonight with my family. He loves going to rodeos. Papa bought him a new pair of boots and a hat. I’m sure they are having a blast. We are counting down the days until Braylon gets here. We are hoping to get him in for 2 visits while he’s here. We have the Child Life team working on a Christmas Day visit and a sibling day visit. While on the rehab floor, we are allowed 1 sibling visit a month. The boys really want to hug each other. ❤️ Tomorrow will be a rest day. We will do some therapies on our own, but on our own schedule. We can’t thank ever

 Sorry my Friday post is a little late. Brandon came to town yesterday and I stayed at the hotel. I was catching up on a podcast and planning on updating the blog when I was done, but I fell asleep. Pax had a great day yesterday. He got to ride the bike again but this time they played Christmas music and he rode around the lobby. His therapist are in love with him and wanted to show him off. I know no one is surprised!  When Brandon came to town he gave Paxton a bunch of cards from last Friday’s Paxton Day. He loves reading mail from his Boulder Family. We hung them up all around his room and told him he’s still part of that group and we will be back soon. He received two packages yesterday, one from Auntie Kacie and Uncle Daniel, and one from Aunt Coco and Uncle Brian. He loves receiving mail. At afternoon physical therapy they had Paxton doing push-ups. They said he did 15! They said the muscles in his arms are starting to wake up. We are so grateful for all the progress. Last night

Pax was feeling much better today and was able to participate in all of his therapies. He’s continuing to make progress. Next week they are adding a school group to his day. He’s so busy, and he prefers it that way. Paxton is making great progress with eating. Fingers crossed the calorie count will be high enough at the end of tomorrow that the feeding tube can stay out.  Bray and Pax FaceTimed today and even had dinner together. We all got Wendy’s (Paxton’s choice). He’s able to eat the nuggets and fries if I chop them up super small. He was super happy not to have hospital food tonight. We played with some clay today, both only using one hand. We made a bird and a monkey. We were pretty proud of the results. I ended up with shingles, so I’ve been trying to get more rest and get outside every day for some fresh air trying to help with the stress.  We are headed to bed early tonight. We are both exhausted but thankful for another successful day. He is being so strong and patient.  Than

 Hi, A lot of people have been asking for our address here. It does take a few extra days to reach us since volunteers do all the patient mail.  Paxton Brown C/O children’s hospital Colorado 13123 E. 16th Ave  room 659 Aurora, CO 80045 Thank you! Janell 

 About 15 minutes ago I was on the phone with my cousin Amanda, and Pax started to get excited and showed me he could lift the upper part of his arm! He was trying so hatrd, his teeth were clenched and his face was red but he did it! He also got to say “hi” and “I love you” to his cousins Eva and Nellie. His day started off with another migraine, but we were able to get it under control by 10:30. He then got his feeding tube out. 🎉 He’s on a 3 day strict calorie count and if he can get enough calories and fluid in, we can keep it out. I caught him taking selfies with his ipad after it was removed. So exciting. After working so hard at therapy, we went for our daily ice cream. This definitely helps with the calories!  Paxton receive care packages from his friend, Ethan and his family, his friend Cooper, The Menascos, and his grandparents. He is definitely feeling loved. I was able to get out and walk today. The wind was freezing but the fresh air felt good. I’m so grateful to everyone

 Good news first. Paxton had a swallow study today and now is allowed to drink thin liquids! He’s been so thirsty and hated that he couldn’t drink anything. This gets us one step closer to getting the feeding tube out.  Pax was unable to participate in any therapies today due to a migraine. Poor kiddo was nauseous, light sensitive, and had pretty bad pain on the left side of his head. It was concerning when he pointed to the spot of the brain bleed to show us where the pain was today. They kept the monitors on and watched his vitals very closely. He didn’t have any neurological changes so the doctors were comfortable treating it as a migraine and not needing any imaging right now. He’s feeling better tonight, hoping he gets a good night of rest. We had our first meeting with his team. We do this every 2 weeks to get updates on progress. Brandon was able to join via Zoom. Everyone is thrilled with his progress but know he has a long way to go still. They gave us a possible discharge dat

 We just had the coolest visitor, former NASA astronaut, Ron Garan! My brother and Amanda did a cameo.com message with Ron for Paxton last week. Ron then reached out to Amanda and said he lived in the area and wanted to meet Paxton. He brought patches from his missions including one that he actually wore in space. He also wrote two books, one children’s book and one adult book that he signed for each of us. We can’t wait to read them! He stayed for about an hour and was so sincere and genuine. We are still in shock I think! Paxton’s day was full of therapies. After his afternoon PT session they said he was doing things he was unable to do during the morning session. He is crushing it! We are still going downstairs for his daily ice cream run. He deserves it after all his hard work. Tomorrow he will have a swallow study to see what he can safely eat and drink. We really want to get the NG tube out as soon as we can. Pax received 3 care packages today. He loves when the volunteers bring

 Today local bikers had a toy run for the hospital. It was a beautiful day so we were able to go out and watch them ride in on their motorcycles. Santa read a few stories after the bikes came through. It was really fun to watch. The rest of the day consisted mostly of ice cream and football. We do some PT on our own on Sundays and of course he wants to do more than they tell us to. Tomorrow we have a full day of therapies, and then former NASA astronaut, Ron Garan, is supposed to come up for a visit. We are so excited. Paxton can’t wait! Bray had a blast at his aunt and uncle’s this weekend. They kept him busy and completely spoiled him. Brandon went back to Billings today. It was great for him to see all the progress Paxton has made. Zumi came back from her dream vacation on the ranch with Tessa. Brandon said she whined and stood at the front door after she left. Apparently she spent the weekend running around the corrals with the cows.  We are looking forward to what this week’s prog

Today flew by. Pax had group therapy today and got to meet other kids on the floor. They made Christmas ornaments that are super cute. You’d never know he did them with only his left hand. We met another family from Billings for some ice cream downstairs today. Their son, Nathan, is the same age as Pax. They gave us some tips since they’ve been here since October. It was so nice to chat with another family. Brandon, Paxton, and I played 3 games if Trouble. We each won a game and Pax did a great job counting out loud. We did some laundry and took the rest of the day easy. Bray is having a blast at his aunt and uncle’s house. They are spoiling him! He’s grinning so big in all the pictures. I’m so thankful for their love and support. Tomorrow is a rest day before another hard week of therapy. We are planning on watching football and taking some solid naps. Thank you all for your support. I’m still amazed at all the people who have reached out. We are so blessed. 💜💜💜💜💜 Janell

We are so thankful for all the support we have received. The Paxton Brown day at school was a huge success. We are so blessed to be part of the Boulder Family. I honestly don’t have words for how grateful I am for everyone who made the day so amazing. My cousins knocked it out of the park with Good Vibe Friday. Paxton loved all the personalized messages and was stunned to see his best friend Clark sending him love. He literally smiled through the entire thing. We even got a shout out from Hawaii. Paxton's therapies went great today. He was able to pedal a bike around the entire floor. He’s still finding his voice, but it’s very patient with me when I try to guess what he’s trying to tell me. Brandon came today and got to see firsthand all the progress Paxton has made this last week. We’ve sent him lots of videos and FaceTimed, but it’s so different to see it in person. Brandon is spending the night at the hospital with him and I’m staying at the hotel across the street tonight. It

 Paxton had a HUGE day. He was able to lift his right leg on his own while laying in bed and he is starting to get his voice back! I understood him when he said “ice cream”, so of course we went and got him some. The therapists and doctors are amazed at his progress today. He’s in great spirits and I think he can finally see things will get better. I think today is the first day I only cried happy tears a s zero sad tears. Fingers crossed tomorrow is much like today. The gaming specialist made it in today and helped Paxton get an adaptive remote for theXbox. It’s so cool that he can play with only his left hand. He is super excited for Brandon to come tomorrow so they can play.  We are continuing to decorate his room for Christmas. We decided we want it to look like Buddy the Elf lives here. His grandparents sent him a super cute bouquet of flowers shaped like a dog in a red chimney vase. Fits our current decor perfectly. Paxton even got his picture taken with a therapy dog in elf gear

 Wow, we had a BUSY day. Paxton’s belly is feeling much better and we are starting a new formula in his NG tube. So far so good. He’s been pretty hungry today so he’s been eating more than he has since we’ve been here. He doesn’t complain about the puréed foods. He’s such a trooper. The goal is for him to get enough nutrition through food so we can get the tube out. They upped his PT to 2 times a day. He gets tired but always gives a thumbs up when they ask if he wants to keep going. He had part of a speech and neuropsych eval today. He did really good. His reading is intact until he gets fatigued, and his memory is intact. We got a surprise visit fro “Uncle” Daniel today. Daniel is my cousin Kacie’s husband. He happened to driving through Denver at a free moment in our day. We met him outside since visitors are restricted due to Covid precautions. It was the first time Paxton has been outside since this all began. Luckily the weather was decent and we got to hang out for 20 or so minu

 This may be a short post, we are exhausted. Pax had a rough night last night. He woke up from a bad dream with a severe bloody nose and bad stomach pains. Since we are still uncertain of the cause of the stroke/brain bleed, the nose bleed was concerning. They did some labs and sent them off to hematology. We also had to take him down for belly X-rays in the night. His intestines aren’t moving as fast as we were hoping so his bowels were FULL of air. He had to do “gut rest” today so no feeds with NG tube or by mouth. We had to place an IV again to get fluids. He’s feeling much better tonight. We had big progress in therapy today. He was able to stick his tongue out for the first time since this all started. We also got a little movement in his right leg during PT today. We decorated his room for Christmas. His Uncle Kevin and Aunt Erin sent a package full of space gifts that arrived today. We used the space stickers to decorate his big paper tree and used them as ornaments for his litt

 I can’t believe it’s been a week since this journey started. Literally the scariest week of our lives. We are so thankful Paxton fought hard to get out of the PICU and is continuing to fight hard today on the rehab floor.  We started the day with some PT. He likes going to the therapy gym but is still learning the effects the stroke had on his body. He gets very emotional during these sessions, but that doesn’t stop him from working.  The next therapy was a surprise, dog therapy. He met the sweetest lab that cuddled in bed with him. The dogs name is Nella, and she visits on Mondays. Speech therapy went good. We are working on alternative forms of communication so he isn’t so frustrated. We also worked on different mouth movements which I can see are getting better. His smile is getting fuller on the room right side. Paxton was able to score an Xbox for his room. Tomorrow they are supposed to bring an adaptive controller so he can play with just his left hand. We also played with some

 I just want to start out by thanking everyone who has called, text,  private messaged, donated, commented, and prayed. We are seriously overwhelmed (in a good way) by the support we have received from friends, family, neighbors, and strangers. It made me realize there’s still a lot of good in people even though we are living in crazy times. Pax had a pretty good day. We started out early with PT this morning. He got to go to the therapy gym for the first time. They have tons of amazing equipment. Today’s therapy was a game of Jenga with dad. This helped his core strength and using his arm. Dad won, but we are all pretty confident he cheated. After PT we did feeding therapy. Paxton was able to eat 2 veggie straws, up from 1 goldfish yesterday. He was able to swallow a little water as well. The therapist gave us permission to try ice cream! There is a little gelato shop in the lobby of the hospital. We loaded him up in his wheelchair and went on an ice cream run. He got hazelnut flavor

 Paxton had a pretty good day. He enjoyed reading to himself this morning which was a huge relief. We weren’t sure if his reading ability was still intact. He was able to swallow a little water today with the speech therapist. This is a huge step since he couldn’t yesterday. During PT he was able to sit in his wheelchair upright for 30 minutes. We even took him for a little tour around the hospital. Brandon was driving the wheelchair a little fast for my comfort, but Paxton’s giggles made it hard for me to get mad.  Braylon is hanging in there. He’s been with my brother, Jess and his girlfriend, Amanda. He also got to spend the weekend at his friend Cooper’s house. He is being brave, but missing his sidekick.  We are so overwhelmed with all the love and support. Thanks to everyone who has reached out to us. It’s comforting to know we have so much support.  Janell

 I’m hoping to use this page for anyone who want to track Paxton’s health progress. I am not great about getting back to everyone’s calls and texts, but I appreciate them more than I can tell you. On Monday, November 29, Paxton came home from school looking and feeling great. Within a half hour of being home he started to panic because he couldn’t talk. I instantly noticed the right side of his body starting to give out. We immediately called 911 and were taken to the ER where he was evaluated by the stroke team. He was diagnosed with a large brain bleed on the left side. We were med flighted to Denver and taken to the PICU. Thankfully, he remained conscious and breathing on his own.  Many (and I mean a lot) of doctors and specialists examined him and ran multiple tests. All we know is that he had a stroke (from the bleed) and it is centered over the part of his brain that produces speech. Yesterday, we were cleared to leave the PICU and were transferred to the in-patient rehab floor h