Sews2Reap

Here is the history -  (if you want to skip this scroll down to the next bolded section) I don't post a lot about my son's medical condition. He was diagnosed with Parry Romberg Syndrome at 5 years old. I knew something was wrong starting at 2 1/2. It took over two years and lots of doctors to get a diagnosis and start treatment.  Because PRS is a rare disease, ( Click the link to learn more about  Parry Romberg Syndrome .) there hasn't been much research or treatment history for this condition. We were so fortunate to find a doctor who happened to read an article about it, start some research and figure it out.  Beginning treatment at age 5 slowed the atrophy and scarring that characterizes most PRS patients. His symptoms and pain went into remission at age 5 with the treatment of steroids and low dose chemo. He went for nearly 4 years with check-ups and no medication. We were so thankful! The remission ended at when he was 9 with a stroke-like episode out ...

I have been the caregiver for a child with a rare condition for over  13 years. Recently, I spent some time caregiving for my mom after major surgery. Both of these experiences have made me aware of how important it is to have a medical plan whether you are the caregiver or the one needing some help. In the case of temporary caregiving. My mom had printed out all of her medications and gathered them together so we could help with dosing during recovery. Post surgery, she was unable to help with when she took what med, and what they were for. I did have the release papers from the hospital and found they were less helpful than I had hoped. In the end, we made a chart for her maintenance medications and supplements and a separate one for the post-op meds. It took some time researching what the meds were for, if any had interactions with the post-op meds, and if they had to be taken separately. I included the time of day to take, amou...

This could be titled "my new toy." I have been wanting one of these cutting machines for a while. I ordered it to come right before school ended so I would be able to play with it the first free day I had.  It comes with a free software that isn't too hard to learn since there are many tutorials online. Thank you, YouTube! This is my first try at a project. I just chose a font and did my name. The pink adhesive backed vinyl on the sticky sheet. It's loaded up and ready to cut.  Here it is "weeded" and ready for the transfer tape. On my cup! SO EASY! I'm hooked. My next project was for essential oil roller bottle labels. Someone on one of my Facebook groups posted pictures of something similar.                                                                   ...

It is has been quite a while since I have updated on my son's journey with Perry Romberg (PRS) and Trigeminal Neuralgia (TN). Honestly, it is easier not to talk about it. Pain is the shadow over his childhood. I am a positive person and I tend to only talk about the things that uplift. No one likes being around the person who always talks about their problems. As a rule, I try to talk about it only when asked. If someone asks my son how he's doing, he always says "Good." No matter how he feels. The answer is good.  It's easier.  So here is where we are today. He is almost 14, tall, thinning out, smart, sassy at times, quiet mostly, with a tendency towards kindness, gentleness, and dark humor. He's creative, smart sensitive, handsome. All the stuff moms always say.  Until a two weeks ago he hurt every day. Usually all day. The best medicine we have found is in his friendships. He smiles more, laughs constantly, and seems to be able to put the pa...

I know it has been a while since I have been on here. February has been a full month with visits to my son's specialists in Dallas, two birthdays and lots of pain for my sweet boy.  Some good things are happening along the way. For some time now our family has been trying to clean up out eating. We are eating less and less processed food and heavy meats, while we increased seafood, and fresh fruits and vegetables. You can read about the beginning of this journey here  Simple Does Not Mean Easy I know it's basic stuff and we are still striving. Some family members struggle more than others. If you were to look in on us you would see the lines are drawn boys vs. girls. My oldest has been doing the best, as she cut out all meat, sodas, and most processed foods. She loves seafood and vegetables. My other daughter is also a very healthy and wise eater, and more disciplined about exercise.  The whole family has been trying to get this one area right be...