Short Version: So the last time you heard from me was March 14th and Brace decided he was ready to shed his last 12mg pain patch. We did it with the help of the doctor this time. We were bracing ourselves for another crash and throwing up. We are big believers in God and think God can help us along the way. On Saturday night I told God, "Look I haven't really asked for anything through this whole adventure, (I figured you guys were asking for us), but will you please please just let him skip this whole throwing up withdrawal thing?" He is now officially off ALL pain meds and lived to tell about it. Prayers answered.... Thank you!
Make sure you ready Saturday 21st if you don't like the long saga.
Day by Day:
So I have been beside myself this month trying to save Glee Music Academy, finish the Lake rental, get Brace to eat and write this blog. (that would be a fail on the blog) Kjarstin called me early Saturday morning and said they were going to Costco and could they get us anything. Well I spent an hour and gave her a list of a 100 things. I don't think they were really ready for that kind of list. Bless their souls, they purchased a whole cart full of food. They got us a lot of red meat for Brace to try to fatten him up and give him some energy. He ate so well at the garage door show at the beginning of the March because we went to fancy restaurants for dinner and he ate red meat. Maybe that is the secret? Red meat?
Sunday 15th: Our dear friend came over and gave us a lesson for church. The White's joined us and it was a nice home church meeting.
Brace had an egg sandwich and a salad with shrimp for meals today. He struggles sleeping without his typical array of things that knock him out at night. In addition his salivary glands don't work right (remember they said it may be 12-18 months before those starting working again) so he takes a drink of water every 15 minutes and then gets up to pee every 3 hours from all the water. Leslie Ashby gave us a diffuser which helps the air have a little more moisture. We use it every night.
Monday 16th: He had physical therapy at the Mission Cancer Center at 8:30am. He helped me take the four heavy digital pianos to Glee for virtual music lessons. He cleared out his truck today and was exhausted at the end of the day, but he wasn't really sleepy. I think it will take a while to have his body learn how to sleep again without meds.
Tuesday 17th: Today he had three full meals. (First ever!) He made french toast but he wasn't really impressed with the taste. He snuck out for Chic-fila for chicken sandwich and fries (before things got really crazy with the virus) and I made ribs in the Sous Vide for dinner. I've decided that yes he has no salivary glands but it is all about motivation. It takes him about 45 minutes to eat and if he is excited about eating he might be willing to sit down and make it happen.
On Tuesday morning I left at 7am and raced to Lake Arrowhead to hang the rest of the pictures. Thank you to the amazing Jason Dino. I made it back in time for most of my private lessons but it was tight. Thank you to the Sweetland family for being flexible. I just posted the beautiful pictures of our vacation rental on Facebook last night.
Wednesday 18th: I stayed up EXTRA late last night because of the first stay at home order. We had already started a few students as a beta test, but we thought we would take everyone online by April 1st. Last night Kjarstin and I had to write an email to all the Glee teachers and all the Glee students (about 180) that all students were virtual starting TODAY. Thanks to Kei, Lexi, Adena and Ben for working round the clock to program computers, create and test accounts, passwords, texts and phone calls. For Kjarstin and I we have the most students on Wednesday.
Brace was pretty tired today, but he worked quite a few hours today anyway. We decided that having him take Tylenol PM was a good thing and he slept better.
Thursday 19th: Brace decided to drive to San Diego for a client that needed parts. He took the parts and put them on their porch and waved through the glass. You have to understand Brace hasn't been doing his job for four months so the clients have been so patient. The client was so grateful for the parts. (this was before the TOTAL virus craziness)
Friday 20th: We woke up and headed to the Lake. Brace was able to drive so no car sickness. We arrived and he was pretty tired but didn't feel sick. I worked like crazy getting everything ready for the photographer on Saturday. Then I read the email - we can't send the photographer because of the stay at home order. I'm like no - I've already paid the spa cleaner, the snow shoveler, the window washer, the cleaner, and the handyman. Then I remembered they gave me the direct phone number of the photographer. I said to her, "Hey, would you be willing to come photograph everything if we aren't there when you come?" She said yes. She was thrilled for the work because she had five gigs that canceled. She came with gloves and a mask to do it all. We watched her from the car take pictures of the jacuzzi, so we could put the cover on before we disappeared for two hours.
Saturday 21st: So I was running around like crazy getting everything finalized for pictures at 1pm. Then we disappeared for lunch at 1pm when the photographer showed up the Lake vacation rental. We came back that night and I cooked dinner. We were just walking in the kitchen and suddenly we hear something fall down. We simultaneously look down and there is Brace's g-tube on the floor. It just fell out. We just started laughing. I'm like, "Hey, I think that is a problem." Then I was worried that it was infected so I took a picture and texted it to Alice, the Nurse Practitioner and my dearest friend Robyn who is GI NP. I think I called Robyn three times in a 3 minute period and she mercifully called me back. If that doesn't make me sound like a crazy woman, I don't know what does. I needed someone to tell me if we needed to pack up and head home and come to the hospital or what. We had no desire to go to the hospital with the virus thing everywhere, but I needed to know if we needed to go anyway. Brace was ready to be done with the tube and both Alice and Robyn said it should be fine and it didn't look infected. So as we say in our family, "I guess today is the day. " No more tube feeding for you.
Sunday 22nd: We had a relaxing morning and had our family church at the Lake home. We came down early afternoon and you guessed it - no traffic.
I've been realizing I can't work full time and feed this man three times a day. I need to somehow make him independent. I took Jana Lenon's advice and I bought a vacuum sealer and was ready to cook in mass on Sunday. I cooked ribs, steaks and fish for me in our BIG Sous Vide tub that I just got. The vacuum sealer I bought didn't work right. You pushed the buttons and nothing happened except the 20th time.
Monday 23rd: Brace had a last minute virtual meeting with the the CEO so he missed physical therapy this morning. We made big software changes in our virtual software for Glee so needed all new accounts for all the teachers and then train them how to do in a few hours.
Tuesday 24th: We met with Dr. Carroll, the Oncologist this early afternoon. We were interviewed to get into his health office to make sure we didn't have the virus. Dr. Carroll is a pretty chill guy and doesn't really over-react. Brace was anxious to talk to him and hear that maybe his immune system was OK because his white blood count was OK. Dr. Carroll was like, "No, you are going to be immunodeficient for 3-6 months, no probably a lot longer. The celia that keeps out illnesses near your lymph nodes was probably destroyed during radiation. And we have no idea what immunotherapy really does. You can't get the virus." Brace's hopes for a clean immune system were dashed but now at least we know."
Wednesday 25th: Kjarstin and I both beta tested a new practice app that turned out to be amazing. I think it will be fabulous to encourage the students to practice AND get the backup tracks that voice students need during virtual lessons. We loved it and will implementing that studio wide on Monday. Thursday and Friday, Ben and Lexi made 180 accounts and passwords and communicated the new system to teachers and students. Did I tell you I was stressed and tired?
Thursday 26th: I was able to cook even more food and now Brace is thawing the already cooked red meat and searing it himself. This man is eating pork chops or steaks twice a day. If I can cook twice a week and just freeze it in these great bags, I can do this.
I spent most of the day organizing all the things I didn't need for virtually teaching for the studio. 5 computers, 4 piano keyboards, 5 computer keyboard, 3 extra webcams, 3 extra tripods, and 3 sets of 6 midi cords. I just wanted to get it all returned in time so I didn't have to pay the credit card bill at the beginning of April. Scott Schiller saw me several times over the weekend.
Friday 27th: I went to UPS, FedEx and Amazon locker to return all the items I organized yesterday. Brace went to Glee to package the pianos. They were heavy heavy. We went to Walmart and got even more red meat for Brace. He was all decked up in mask and gloves. After reading an article about New York, we have now decided Brace shouldn't get out of the car. I wear my gloves all the time when I am outside so I don't bring anything home.
Saturday 28th: I slept in till 8:30am. It was so nice to not be changing anything major at Glee today. I did have an EDD audit that I worked on and I did organize the pictures from the Lake Arrowhead cabin.
Sunday 29th: Great day of church with James and Kjarstin. We went on the social distancing missionary parade with them after decorating the car with the names of the Elders that had to come early from their international missions. Elder Smith, Elder Procuniar, Elder Lenzinger, Elder Harps, and our very own Chimney Rock Evan Williams. (that's the name of our street). What we didn't expect it how fun it was to see roll by and see all the people in their cars from church.
Our favorite sign in front of the Harp's house. "Wash your hands and say your prayers. Jesus and Germs are everywhere."
Brace feels tired, but he is looking sooo good because he is growing hair. Every car that rolled by commented on his hair. It is a good day.
Thank you's
******************
Cheri and Corte Haggard for brining a large Corona virus to the house. (not sure if I included a picture last time)
Nelson family and Williams family for toilet paper
Jalane Hong for flowers, hot dog buns, butter and paper towels
Robyn for teaching and saving the day with great advice for Brace's tube
Julie Balhorn for letting me borrow her sealer until mine came
Cheri Wickam for finding a link to Kohl's so I could have my new sealer delivered next week. If you haven't heard Amazon takes a month right now.
Melissa Fulton for offering several times to get us stuff
Craig Williams for calling Brace to chat
Christine and Nicol for going out of their way to make sure we are OK
Marantec for being such a great company to work for.
Kjarstin and James for buying a TON of stuff at Costco
Garage Door clients touching Brace's heart. So many of them have expressed their love and prayers in his behalf.
Gary and Lisa for reaching out yesterday. :)
Sue and Jeff Frazier for taking a picture at our favorite spot in Hurricane.
Dr. Carroll and Dr. Nguyen for going out of their way to help us.
Stephen - thank you for the fry sauce. He used it this week on his potatoes.
Penelope for being a low maintenance daughter that is full of life.
Jason Dino for hanging the pictures on TWO different days.
P.S. Penelope told her Mission President in Oregon that he couldn't send her home because she couldn't bring home a possible virus to her Dad. At the moment she thinks she will be able to finish her mission in Oregon. She is happy as a clam even though she can only leave the apartment for food and gas. She teaches virtual lessons and the Bishop has asked her to train all the old people (virtually) how to pay tithing, do family history and read the scriptures on the computer. She would normally like that, but teaching old people how to do things while you are on the technology is tricky.
https://scripturesinpink.wixsite.com/penelope
Make sure you ready Saturday 21st if you don't like the long saga.
Day by Day:
So I have been beside myself this month trying to save Glee Music Academy, finish the Lake rental, get Brace to eat and write this blog. (that would be a fail on the blog) Kjarstin called me early Saturday morning and said they were going to Costco and could they get us anything. Well I spent an hour and gave her a list of a 100 things. I don't think they were really ready for that kind of list. Bless their souls, they purchased a whole cart full of food. They got us a lot of red meat for Brace to try to fatten him up and give him some energy. He ate so well at the garage door show at the beginning of the March because we went to fancy restaurants for dinner and he ate red meat. Maybe that is the secret? Red meat?
Sunday 15th: Our dear friend came over and gave us a lesson for church. The White's joined us and it was a nice home church meeting.
Brace had an egg sandwich and a salad with shrimp for meals today. He struggles sleeping without his typical array of things that knock him out at night. In addition his salivary glands don't work right (remember they said it may be 12-18 months before those starting working again) so he takes a drink of water every 15 minutes and then gets up to pee every 3 hours from all the water. Leslie Ashby gave us a diffuser which helps the air have a little more moisture. We use it every night.
Monday 16th: He had physical therapy at the Mission Cancer Center at 8:30am. He helped me take the four heavy digital pianos to Glee for virtual music lessons. He cleared out his truck today and was exhausted at the end of the day, but he wasn't really sleepy. I think it will take a while to have his body learn how to sleep again without meds.
Tuesday 17th: Today he had three full meals. (First ever!) He made french toast but he wasn't really impressed with the taste. He snuck out for Chic-fila for chicken sandwich and fries (before things got really crazy with the virus) and I made ribs in the Sous Vide for dinner. I've decided that yes he has no salivary glands but it is all about motivation. It takes him about 45 minutes to eat and if he is excited about eating he might be willing to sit down and make it happen.
On Tuesday morning I left at 7am and raced to Lake Arrowhead to hang the rest of the pictures. Thank you to the amazing Jason Dino. I made it back in time for most of my private lessons but it was tight. Thank you to the Sweetland family for being flexible. I just posted the beautiful pictures of our vacation rental on Facebook last night.
Wednesday 18th: I stayed up EXTRA late last night because of the first stay at home order. We had already started a few students as a beta test, but we thought we would take everyone online by April 1st. Last night Kjarstin and I had to write an email to all the Glee teachers and all the Glee students (about 180) that all students were virtual starting TODAY. Thanks to Kei, Lexi, Adena and Ben for working round the clock to program computers, create and test accounts, passwords, texts and phone calls. For Kjarstin and I we have the most students on Wednesday.
Brace was pretty tired today, but he worked quite a few hours today anyway. We decided that having him take Tylenol PM was a good thing and he slept better.
Thursday 19th: Brace decided to drive to San Diego for a client that needed parts. He took the parts and put them on their porch and waved through the glass. You have to understand Brace hasn't been doing his job for four months so the clients have been so patient. The client was so grateful for the parts. (this was before the TOTAL virus craziness)
Friday 20th: We woke up and headed to the Lake. Brace was able to drive so no car sickness. We arrived and he was pretty tired but didn't feel sick. I worked like crazy getting everything ready for the photographer on Saturday. Then I read the email - we can't send the photographer because of the stay at home order. I'm like no - I've already paid the spa cleaner, the snow shoveler, the window washer, the cleaner, and the handyman. Then I remembered they gave me the direct phone number of the photographer. I said to her, "Hey, would you be willing to come photograph everything if we aren't there when you come?" She said yes. She was thrilled for the work because she had five gigs that canceled. She came with gloves and a mask to do it all. We watched her from the car take pictures of the jacuzzi, so we could put the cover on before we disappeared for two hours.
Saturday 21st: So I was running around like crazy getting everything finalized for pictures at 1pm. Then we disappeared for lunch at 1pm when the photographer showed up the Lake vacation rental. We came back that night and I cooked dinner. We were just walking in the kitchen and suddenly we hear something fall down. We simultaneously look down and there is Brace's g-tube on the floor. It just fell out. We just started laughing. I'm like, "Hey, I think that is a problem." Then I was worried that it was infected so I took a picture and texted it to Alice, the Nurse Practitioner and my dearest friend Robyn who is GI NP. I think I called Robyn three times in a 3 minute period and she mercifully called me back. If that doesn't make me sound like a crazy woman, I don't know what does. I needed someone to tell me if we needed to pack up and head home and come to the hospital or what. We had no desire to go to the hospital with the virus thing everywhere, but I needed to know if we needed to go anyway. Brace was ready to be done with the tube and both Alice and Robyn said it should be fine and it didn't look infected. So as we say in our family, "I guess today is the day. " No more tube feeding for you.
Sunday 22nd: We had a relaxing morning and had our family church at the Lake home. We came down early afternoon and you guessed it - no traffic.
I've been realizing I can't work full time and feed this man three times a day. I need to somehow make him independent. I took Jana Lenon's advice and I bought a vacuum sealer and was ready to cook in mass on Sunday. I cooked ribs, steaks and fish for me in our BIG Sous Vide tub that I just got. The vacuum sealer I bought didn't work right. You pushed the buttons and nothing happened except the 20th time.
Monday 23rd: Brace had a last minute virtual meeting with the the CEO so he missed physical therapy this morning. We made big software changes in our virtual software for Glee so needed all new accounts for all the teachers and then train them how to do in a few hours.
Tuesday 24th: We met with Dr. Carroll, the Oncologist this early afternoon. We were interviewed to get into his health office to make sure we didn't have the virus. Dr. Carroll is a pretty chill guy and doesn't really over-react. Brace was anxious to talk to him and hear that maybe his immune system was OK because his white blood count was OK. Dr. Carroll was like, "No, you are going to be immunodeficient for 3-6 months, no probably a lot longer. The celia that keeps out illnesses near your lymph nodes was probably destroyed during radiation. And we have no idea what immunotherapy really does. You can't get the virus." Brace's hopes for a clean immune system were dashed but now at least we know."
Wednesday 25th: Kjarstin and I both beta tested a new practice app that turned out to be amazing. I think it will be fabulous to encourage the students to practice AND get the backup tracks that voice students need during virtual lessons. We loved it and will implementing that studio wide on Monday. Thursday and Friday, Ben and Lexi made 180 accounts and passwords and communicated the new system to teachers and students. Did I tell you I was stressed and tired?
Thursday 26th: I was able to cook even more food and now Brace is thawing the already cooked red meat and searing it himself. This man is eating pork chops or steaks twice a day. If I can cook twice a week and just freeze it in these great bags, I can do this.
I spent most of the day organizing all the things I didn't need for virtually teaching for the studio. 5 computers, 4 piano keyboards, 5 computer keyboard, 3 extra webcams, 3 extra tripods, and 3 sets of 6 midi cords. I just wanted to get it all returned in time so I didn't have to pay the credit card bill at the beginning of April. Scott Schiller saw me several times over the weekend.
Friday 27th: I went to UPS, FedEx and Amazon locker to return all the items I organized yesterday. Brace went to Glee to package the pianos. They were heavy heavy. We went to Walmart and got even more red meat for Brace. He was all decked up in mask and gloves. After reading an article about New York, we have now decided Brace shouldn't get out of the car. I wear my gloves all the time when I am outside so I don't bring anything home.
Saturday 28th: I slept in till 8:30am. It was so nice to not be changing anything major at Glee today. I did have an EDD audit that I worked on and I did organize the pictures from the Lake Arrowhead cabin.
Sunday 29th: Great day of church with James and Kjarstin. We went on the social distancing missionary parade with them after decorating the car with the names of the Elders that had to come early from their international missions. Elder Smith, Elder Procuniar, Elder Lenzinger, Elder Harps, and our very own Chimney Rock Evan Williams. (that's the name of our street). What we didn't expect it how fun it was to see roll by and see all the people in their cars from church.
Our favorite sign in front of the Harp's house. "Wash your hands and say your prayers. Jesus and Germs are everywhere."
Brace feels tired, but he is looking sooo good because he is growing hair. Every car that rolled by commented on his hair. It is a good day.
Thank you's
******************
Cheri and Corte Haggard for brining a large Corona virus to the house. (not sure if I included a picture last time)
Nelson family and Williams family for toilet paper
Jalane Hong for flowers, hot dog buns, butter and paper towels
Robyn for teaching and saving the day with great advice for Brace's tube
Julie Balhorn for letting me borrow her sealer until mine came
Cheri Wickam for finding a link to Kohl's so I could have my new sealer delivered next week. If you haven't heard Amazon takes a month right now.
Melissa Fulton for offering several times to get us stuff
Craig Williams for calling Brace to chat
Christine and Nicol for going out of their way to make sure we are OK
Marantec for being such a great company to work for.
Kjarstin and James for buying a TON of stuff at Costco
Garage Door clients touching Brace's heart. So many of them have expressed their love and prayers in his behalf.
Gary and Lisa for reaching out yesterday. :)
Sue and Jeff Frazier for taking a picture at our favorite spot in Hurricane.
Dr. Carroll and Dr. Nguyen for going out of their way to help us.
Stephen - thank you for the fry sauce. He used it this week on his potatoes.
Penelope for being a low maintenance daughter that is full of life.
Jason Dino for hanging the pictures on TWO different days.
P.S. Penelope told her Mission President in Oregon that he couldn't send her home because she couldn't bring home a possible virus to her Dad. At the moment she thinks she will be able to finish her mission in Oregon. She is happy as a clam even though she can only leave the apartment for food and gas. She teaches virtual lessons and the Bishop has asked her to train all the old people (virtually) how to pay tithing, do family history and read the scriptures on the computer. She would normally like that, but teaching old people how to do things while you are on the technology is tricky.
https://scripturesinpink.wixsite.com/penelope
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