Saturday, August 15, 2020

Oh my what time it has been!!!

To all those that read I know that it has been forever. I will have to explain...

Do to unforeseen circumstances I have not been able to write very much... Ok nothing until now. I have been really busy. I know I was all caught up from 2017 and now it is 2020! I am so sorry it has been that long and there is a good reason.
After getting through 2017 I needed to take a moment to breathe. That year and these following years have been really really hard. Not only mentally but emotionally too. There have been long nights and early mornings and lots of tears. More pain than I can recall in a long time. I know I mostly talk about the kids and I am getting to that but I just wanted you all to know how bad I feel for not writing, but now that I am doing better and have a little less stress in my life I will be able to update you all accordingly.

Rhett finished his mission and has just been hanging out at home with grandpa while I have been working and the other kids are at school. His lung function were at 9%-10% at it's best. He was on 7-8 liters of oxygen when he is home on the concentrator and 4-5 on the oxygen tanks when he is out and about. If he needs more he turns himself up and if he doesn't someone will. We carry with us a sat monitor to check him frequently. He plays minecraft and sleeps frequently. I think he naps every day for at least a hour or two. He knows that oxygen is the only thing keeping him alive. He did give us a scare over last summer when his sats got down to 37 when we were visiting family in Burley Idaho. That happened when he ran out of the oxygen from the tank he was on. He was instantly put on a new tank of oxygen and rested. His doctors are amazed that he is still alive since they did tell me that with the oxygen that low it could kill someone. He will go in every 6 months to see cardiology and every 3 months for a pulmonary function test to see if he is still where he is. However due to recent events the doctors would like to see him more so he is now seeing the pulmonologist wants to see him every 4-6 weeks and the cardiologist wants to see him (if I remember correctly every 3 months but I would have to double check).
After I had written the rough draft of this Rhett was in the hospital right after his 21st birthday. He was there for 12 days and is now on a bipap/ventilator all the time other than when he eats and showers. He has oxygen bleeding into the vent at 8-9 liters from his concentrator and 10 liters on the tanks when I have to take him out. He is in respiratory failure and thinks he is fine. It is so hard to watch him everyday struggle just to breathe and we are having a lot of end of life conversations. It has been a struggle for summer and I am sure the struggle will continue but it will all be taken into consideration to what is going on. He followed up with his primary care doctor soon after the hospital stay and it was a sobering moment we talked a lot about what Rhett wants out of the rest of his life. I have more detail on Faceboook.

Nikole recently made it through high school. Last time I wrote about her she was in the middle of 10th grade. She was thankfully placed on a 504 which helps kids that need extra accommodations to succeed. She was able to go to California with her 3D animation class both her 11th grade and her 12th grade year. She was able to meet and talk to different animators from different companies while she was there. It was the highlight for her both of those years. Right before the schools closed she went and returned from California. I was grateful that she could experience that for one last time. She made it through her senior year barely thanks to the the COVID-19 and the amount of time I had to sit with her to get her to do the work and turn it in. It didn't help that she got sick when the virus spread and the schools were shut down. She ended up being test for the virus and her anxiety shot through the roof for the safety of her brothers. Thankfully her test came back negative and she only had walking pneumonia. She was given antibiotics and they finally worked. However this caused her to get behind in her school work and she had to play a lot of catching up. I was grateful that the teachers were so relaxed this last quarter of school just because there was only so much that could have been done and they were missing so much information from their teachers. She passed all her class and graduated!!! We had a party for her and I was able to get my cute neighbor who does photography to take some pictures for her senior pictures.
She needs to work on her drawing skills and find out what she desires to do. Right now with no direction and with a lot of confusion it is hard for her to actually decide what to do. This makes my heart ache as I know she can decide but is choosing not.

Gavin made it through jr. high!! It is a miracle and I am grateful that he was able to attend the same high school as Nikole. He struggled through those year of what I call, "Living Nightmare" due to all that kids have to go through during this period. He did struggle and it was hard, but I was glad when he went to high school. There was a problem over the summer and he lost his phone privileges altogether. I took it from him and kept it for over 7 months until we were able to set up ground rules, and he knows that if they are violated he will be without a phone and extra privileges again. Oh man did he struggle with some of his classes while others he excelled at. Sadly like Nikole he needed me to sit with him and encourage him to get his work in also. He also fell behind due to the depression that hit with the school closing and the routine being taken away from him. But through it all and the consistent reminders to get things done before you play on the phone or computer he did pass all his classes in 9th grade!! He will be starting again this month at school and I pray that he stays healthy and safe while he is there. I am not sure how the calendar is looking with days at school and days at home but we will figure it out.

Dylan finished out elementary at home. After being at the neighborhood school where we used to live since the middle of 3rd grade. He struggled more as he got older. Hitting that stage of I would rather not do work I just want to play. While he was at the "hearing" school he was able to make friends. He thankfully was never targeted and everyone knew him in the school which is awesome! Usually if everyone knows you it is harder to be a target of bullying since if you have that many friends you have people that will stick up for you. He went to school for a year more with grandma and when she retired I took him to and from school. I loved being able to spend one on one time with him even though most of the time we were listening to music. There were a few times I brought him to work with me after school was out for him and all the kids that went to the school he was at knew him and said hi to him. It was sweet to watch jr. high kids be nice. I do not think they realized that he was only a year younger than them since he is so small. The last few months he has been on his own with most of his work as I was trying to help the high school students. He has done great under the circumstances. Since he is now finished with 6th grade he will be going back to the "deaf" school where he will be there for 2 years then up to Skyline with his brother. It will be good for him to work on listening and signing again. He will be missed by his school nurse the most I am sure of it since she would have followed him through high school. He had major surgery July 2019 with a palate expansion and plates put in his right knee along with screws in both ankles all at the same time. His lung function is at a steady decline according to the doctor and right now he is at 70% lung function. He like his brother will go in every 3 months for a pulmonary function test and will see cardiology every year unless he starts to get worse. Due to the COVID they are not scheduling a lot of pulmonary lung function tests. He will get one maybe this year if the doctor agrees.

As for me I have been juggling a lot. Helping family and taking care of kids. Last winter my dad fell through a wall in the kitchen. We were able to patch it with the help from my mom's school principal. While we waited for summer in order to fix the whole kitchen. since the kitchen was all wallpaper to begin with it was a big project. So June 7th 2019 I rounded up all the kids and started taking all the wallpaper from all the walls that we could reach. I knew we were on a deadline due to Dylan needing to have major surgery on July 17th. The race was on... we took the whole kitchen apart and we stripped paint from the wood and patched the wall and. By July 16th we were putting the kitchen back together. I had completed all that I needed to do in order to just remain at the hospital with my baby while he had surgery and recovered from that as hard as it was. Through all this I was in a business venture that went belly up and am still recovering from that while I work on starting my own business to help people in the education field, as well as mentor and coach people through life. I completed my bachelors degree in business administration just weeks before my daughter graduated. It has been a long time and coming but it is worth it. I am excited to help more people.

Due to all the crazy things that have been going on that is the reason I have not updated in so long. I was too busy juggling life to get on and update when the updates are so long. Hopefully I can do better, but if there is a period of time where I am not updating as much as I would like it is because I am working on building a business on top of everything else.

You can find me on Facebook or Instagram, just please message me and let me know you found me through my blog and why you would like to be my friend, since I do not friend everyone since there are a lot of people I do not know but I am willing to be friends with many. If I can help you or if you would like some mentoring please let me know.

Here are some random pictures over the years (2017-2020) that I have missed updating this blog since I cannot put them all up please find me on Facebook or Instagram.



























































































































































































































































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