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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 everyone who has reached out. I’m blown away by everyone’s kindness. It’s so amazing to know we have so much support, even from people I haven’t talked to in 20 + years. I will never forget how loved you make us feel. Love you all.

Janell

Comments

  1. Janell! I think about you everyday and pray for complete healing for your sweet Paxton. Can I bring you anything? PLEASE let me know what I can do to help! I am about 50 minutes from Children's Aurora. Keep your beautiful chin up!!

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