Paxton's Progress

 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 images i

 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 frustra

 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 understanding o

 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 Pax at nigh

 Paxton was so excited to go back to school today. He woke me up at 3:00 this morning thinking it was 6:00 and wanting to get up and get ready. We had a meeting before school started to discuss all the needed accommodations that we can foresee at this point. The school was so accommodating and amazing. Paxton was so happy to be back with his friends and teachers. We are so luck to have such a great school community. Braylon and a couple of his friends were able to come to Paxton’s class today and join us for a Zoom presentation from the Child Life specialist in Denver. She explained Paxton’s stroke, the rehab he did at the hospital and now, why things look different now, and explained some of his accommodations. The hospital truly does everything they can to make the transition smooth. We left school at about 11:00 and came home for lunch. We then headed to his PT and OT appointments. We are both pretty exhausted from our day. He ended up with a migraine but we were able to get it unde

 We survived our first day of leaving the house. I was nervous because of the ice and snow. Walking in snow boots took a little getting used to for Pax. My friend Liz gave Pax such a good haircut. He looks so darn cute. ❤️ It was so nice to see her. Next, we went to get my booster and Paxton’s second dose of his COVID vaccine. The neurologist wanted him to get it ASAP when we got back. The hospitalizations of kiddos in Denver was rising rapidly.  Our friends, the Lindh’s, brought us dinner and visited for a bit. It feels so nice to actually see the people who have supported us so much. I look forward to continuing to see people, even if I cry every time.  Bray and Pax have been playing a lot together. They are so happy to be together again. They giggle and laugh so much. The hospital called today and we are scheduled to go back the week of February 14th. We are hoping to get some answers and possibly a solution depending on what they find. In the meantime, we focus on rehab, healing, a

 We made it home. We were only delayed about a hour. We were surprised by Uncle Jess and Aunt Amanda at the airport. They had balloons and a banner. I cried as soon as I saw them. When we pulled into the driveway there was a huge sign outside for Pax from Uncle Kevin and Aunt Erin and I cried some more. Just now a neighbor dropped off a lasagna. Tears. We are so fortunate! It was hard to leave the comfort of our medical team but were anxious to get home. We are both exhausted and in bed.  Thanks to every single one of you. I don’t have the right words to express my gratitude.  Janell

 Well, we made it through the last day of therapies and coordinating home treatments. It was really hard to say goodbye to everyone who helped Paxton not only survive, but progress so quickly. We shared a few tears with a few of the therapists and nurses today. My dad and Krissi made my life so much easier today. They got us boxes and a few things I needed to travel home. Krissi and I packed up all our stuff and they took it to be shipped to us. We were then able to have our last ice cream date (until next month).  Pax had a lot of final evaluations at all therapies today getting ready to transition to outpatient work. He is exhausted but so ready to go home. I am slightly nervous about getting home tomorrow because there is a winter storm coming into Denver and we are already getting warnings of possible delays and cancellations. All we want to do is get home.  We will continue to keep everyone updated on progress and the results of future appointments. Today it sounded like we will b

 Wow, today was so busy. Pax did a lot of therapy and finished up his neuropsych testing. We even did a community outing with PT and OT to Panera. He ordered a brownie and didn’t even want to rest to eat it so we headed right back. He chose to take the stairs instead of the elevator on the pedestrian bridge. He’s so amazing! Papa and Krisi made it here this afternoon. Papa was blown away by Paxton’s progress. The last time he saw him he was in the PICU, couldn’t talk, eat (or even stick out his tongue) and today he showed him how he can jump and even squeeze papa’s hand with his right hand. Papa also received the best gift, a hug with both arms. ❤️ I started taking down all the cards and notes everyone sent. It was really bittersweet for me. I also spent the day doing paperwork, calling doctor’s offices, contacting the school to get set up for when we go home. My dad and Krissi are helping with the packing and shipping of everything we’ve collected home. I’m so grateful for their help.

 We are getting so close to Wednesday and going home! We are very excited and a little nervous. Yesterday Pax was able to eat popcorn for the first time. This was a huge accomplishment for him. I think if he had to chose never eating popcorn again or not walking, he’d pick not walking.  Yesterday he had no therapy so we played Uno, Spot It, read together, and I napped. Today he had OT, PT, and speech. Of course we got ice cream in the afternoon. The family game room was open today so we played air hockey, basketball, and legos. It’s amazing what he can do with his left hand. We played a few games and ordered some food in. All in all it was a good day.  Only 2 more therapy days left and we come home. I’m praying the weather and the airlines cooperate so we can get home. Bray goes back to school tomorrow. He and Brandon are working hard on getting things ready for us when we get home.  Thanks again for all the love and support. We love you all. ❤️ Janell

 Hope everyone had a safe NYE! Pax and I watched the last 2 Harry Potter movies, ate snacks, and watched the snow fly. We weren’t sad to say goodbye to 2021, but are looking forward for the progress he will make in 2022. Brandon and Bray were able to go to a friend’s house last night and have a little normalcy. I haven’t heard from them so I presume they made it up to midnight. Pax has the day off of therapy. We are going to start cleaning out our room. We still have some decorations up and I need to start looking for boxes. We are so excited to get home.  Thanks for all the support you all have given our family. Cheers to a healing 2022. Janell