September Rinnie
It’s been a while since I’ve done an update. Rinnie has been sick with a cold and taking care of her is my priority. She had a fever, cough and body aches. After a trip to the doctor, she improved greatly. Meanwhile, she has lost more weight. <Sigh> But she is once again eating well, so that will change soon.
Rinnie started on food based vitamins, minerals, fruits and veggies just before her cold. She gained 2 pounds in 3 days on the stuff! But, she did not eat so well due to the coughing and lost those precious 2 pounds. She may have lost more than that, but she has not gotten on the scale for confirmation. As she continues to take the supplements, we know that she can gain again. I just put the powder in a smoothie, juice or soy milk for her and she drinks them down. She doesn’t care for the taste, but so far is taking them. There are a few capsules that taste really bad, so I leave them in the capsules for her to take. She refuses to eat any fruits and vegetables, and I believe it is vital to get good nutrition into her, so I am grateful for these supplements.
We were blessed this week to be able to see Jon Rousseau for a divination treatment. He does an African healing modality and Rinnie was quite intrigued by it. And very relaxed and peaceful afterward! He offered this work to her for free, and called me today to offer me a treatment as well. We are so blessed. Rinnie hopes to be able to work with him more in the future, and he has graciously agreed to trade body work for his work.
We are so very grateful for our community who supports us in this adventure. I was given Jon’s name by Monique (she is a checker at the food co-op) and she has been very active in helping us. We are so grateful for Monique! I have been a worker member of the co-op for 5 years or so and used to do chair massage for the employees. There are other things we will do in the coming days to support Rinnie in her healing adventure.
Now, we are off to Atlanta for more treatments with Dr Turner. Rinnie always looks forward to these visits. She had a rough night last night and is less enthusiastic about the trip this time. Her back was hurting. She had 2 days in a row of being up and out more than usual, with me having her sit up in her chair to see how long she can stay upright. (It’s a delicate balance that we have here…encouraging her to do as much as possible without tiring her out too much.) Her back muscles are weak from spending so much time in bed, but now that we have the chair for her, I have been getting her up and out more to strengthen those muscles. There is healing power in sitting on the deck in the sun on a beautiful day! Anyway, she took an advil for her back discomfort, and did not have enough food on her stomach, which resulted in abdominal cramps all night long. So my night was spent giving her small amounts of food and drink, holding her hand and giving her stronger medicine so she could rest. She slept until about 1pm, which was very welcome! All in all, she had been sleeping much better. She had a couple of nights where she was awake during the night coughing with her cold, but was still able to sleep most of the night. We’ve both been getting 8 hours of sleep or more each night. YES!
An update about the referral to DSS for medical negligence: The social worker came back out to our home this week and officially “closed the case”. She acknowledged that I am taking care of Rinnie and seeking out appropriate medical care for her. Duh! Anyone who knows us knows that I love my daughter and take the very best care of her that any mother can. Yes, we are not doing standard chemo and radiation, but I am doing everything in my power to care for my daughter. And she is the one making the choices about the treatment after receiving answers to all of her questions. Her questions are many and insightful. She is 13 years old, it’s her body and she can choose. Although I know at least one person who thinks I should just tell her what to do, pump her full of chemo, zap her with radiation and give her a boat load of pain killers and other drugs, it is not her choice! I honor her intelligence and know that she has innate wisdom. She knows when she is in pain and makes the call about the solution! She has a wide variety of solutions available to her from meditation, to plain tylenol, to ice packs, to advil, to aleve, to tylenol with codeine, to morphine. I would never let her be in pain.
Rinnie has chosen to do her schooling at home. We have completed the paperwork so that she can be a “homebound student”. What this means is that she remains a student at ArtSpace Charter School and will have a visit from a teacher each week to pick up her work and to bring her new assignments. She has thus far been very diligent in completing her assignments. We have found that she can do more work in 3 hours than she gets done in a full day at school. It is working well for her. As she wants to, she can go back to school. I believe her decision is mostly based on being different from how she used to be. It is hard on her to see her friends running around and not being able to participate. All of her friends have been very supportive to her and we hope to have them over for a poker party soon! (Hint: If you play poker with Rinnie, don’t play with mone! You wil lose it!) One of her friends (Logan) is a good cook, and has made her banana bread as well as blueberry muffins and Rinnie actually attacks the food when she brings it to her! And the best part is that she cooks in a very healthy sugar free fashion, hiding vegies in her baked goods.
It is our wish that you would continue to hold us in your hearts and prayers. We actually have an alarm set so that we pause and return the favor for all of those who pray for us. As always, you can go to Rinnie’s website if you wish to make a donation for Rinnie’s care. With Rinnie at home, and sick this past week, I did not work much and bills still have to be paid. And if you are a client, please call and schedule an appointment for when we return from Atlanta. I bring Rinnie to the office and she does her school work or surfs the internet while I work. I am so very blessed to have work that fills my soul with joy! I sometimes think that I get more out of the massage than my clients do!
Pam