April 12, 2020

There was music today! The most glorious sound. First: Shannon texted me pretty early that she has been off the vent since the previous day. Around 10am, she was off for 24 hours straight. When I texted her around 8pm, she was still off vent. The plan is for her to be completely weened by this weekend. We are praying she hasn't overdone it, and has to spend a couple of days back on it.

Second: During her speech therapy today, Shannon's therapist covered her trach opening and Shannon SAID WITH HER OWN VOICE "Happy Easter"!!!!! I haven't heard her talk in over 4 weeks, and it was so fantastic. It was a quiet little voice, but honestly, I've become quite adept at listening to still small voices lately. This was glorious sound.

She only had one other therapy today, so we've been able to spend a lot of FaceTime with her. Our church has invited us to hold church at home during the pandemic, and it's been a great experience, but one Shannon has not been part of. We had a great Easter service today, which Shannon was able to join us for on my phone. I made sure she got to see each person who was teaching, as well as the small child chaos happening during the otherwise reverent moments; to give her the full experience. We exchanged a few silent laughs at the gymnastics happening under the coffee table during a talk about the Atonement. It was good to see her so happy.

 This afternoon for art therapy, we watched her open up her Easter basket from us. That was fun to watch. She was also "hanging out" in the kitchen with us while we got Easter dinner ready. I was concerned that Easter would be really hard, but we've had a very peaceful day with lots of interaction, so it's been really nice.

Besides the interaction we've had with her, she's been able to just relax today, watch a movie, and get some needed rest. This week she will be back to her usual therapy schedule, which is pretty tiring physically and mentally.

The rest of her recovery is still moving along. She still has some low blood pressure issues, is currently fighting an infection, has cognitive and memory issues, as well as her paralysis and other spine related injuries. But she's getting stronger, which is what she needs for the long hard recovery road ahead.

On the home front, we are in full swing getting our basement finished so she has a room and bathroom that will accommodate a wheelchair. Another long road. Balancing these kids home from school, work from home for Lancer, chatting with Shannon many times a day, and all the calls from the hospital, insurance, etc- it feels like a few full-time jobs. Thank goodness we have a big yard, lots of screens, and a currently relaxed attitude about the long-term effects on children's brain from prolonged screen use.

We are so grateful for the miracles we've seen, even just today. We know our Father in Heaven is hearing and answering the many, many prayers for Shannon. Please keep praying for Shannon to regain full use of her lungs, and to be able to have her trach removed. Pray for her upper body strength to continue to improve, for her cognitive abilities to return along with her memory, for her spinal cord to heal, and for her to be able to endure the long period of time before she can come home. 

Shannon is experiencing frustration and loneliness while she's being isolated in her room. She would love to hear from you, if you have time to send her a text, a note, a hello. If you don't know how to get a hold of her or need her address, message me the way you normally would. Thank you for being you, and for caring as much as you do. We hope you've had a wonderful Easter.


The power of music-

"I have to sing, I have to play. The music, it’s not just in me, it is me. When life gets me down, I play my guitar." Ernesto-- Disney's Coco