Exhausting but Good Week

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 night so I’m sure I will know right away if he doesn’t make it all night in the hammock.

Everyone has been so kind and patient with us since we’ve been back. We are so lucky to be surrounded by such a great community. I truly feel so grateful my kids go to Boulder, they’ve all been amazing this week. I want to thank you all again for all the love and support. We are adjusting to our new normal and thankful for all of Paxton’s progress. We love you all.

Janell

Comments

Making Progress

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 ...

Deep Breaths

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...

Bittersweet Goodbyes

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 ...

Paxton's Progress

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