My little mountain climber

This little girl has been climbing a mountain since she was born. She was born very prematurely at 23.5 weeks gestation and it's been a battle to keep her with us. Her pediatrician told me recently that she has the longest medical record at his office. I actually have some trouble believing that because there are a lot of children out there with a lot of medical problems. But it's pretty clear that her health is complicated.

Recently she's had some kind of respiratory virus that put her back on supplemental oxygen for the last few weeks. She seems completely recovered but she's still needing the extra oxygen. It's been so frustrating to me. Finally tonight I tested her blood oxygen saturation and it was good enough to take off her oxygen until bedtime. We'll test her again in the morning but I'm feeling hopeful that just maybe we can go somewhere without taking that heavy tank of oxygen with us.

I love this picture of her. It was taken on a camping trip last summer. It was a great summer with no illnesses! She loves to camp and was so cheerful sitting in her special chair with that baseball cap on backwards looking so cute. She was closing her eyes because she was feeling a little shy. We love her!

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Visiting Susquehanna: The Priesthood Restoration Site

On our way home from Palmyra, we decided to go a couple of hours out of our way to visit the recently opened Priesthood Restoration Site along the Susquehanna River. This is where we believe that Joseph Smith and Oliver Cowdery received the keys of the Aaronic Priesthood from John the Baptist which gave them the authority to baptize. This site also has the restored Isaac and Elizabeth Hale home where Joseph and Emma lived for a year as well as the home where Joseph and Emma lived on their own. We spent a couple of hours there and I wouldn't have minded a few more minutes but we had a long way to go that night. It's a beautiful setting, very much in rural Pennsylvania. However, on the day we were there, cars at a racetrack nearby were detracting from the peace and quiet. I'm guessing that's not as big of a problem on weekdays. The Hale Family was quite well-off for their day so their home was probably nicely decorated with wallpaper and carpet. ...

Book Review: Out of My Mind by Sharon Draper

This is a juvenile fiction book about a young girl named Melody with severe cerebral palsy. Her body doesn't allow her to feed herself, speak, or do much at all. She's very intelligent with a photographic memory but she can't really communicate. Finally, in 5th grade, she gets a "Medi-Talker" which is a computer that speaks what she types in. Finally she has a voice. This book explores what it is like to be severely physically disabled but not mentally disabled. It seems like one of the most frustrating of all scenarios. She is completely aware of all the cruelty (subtle and otherwise) that her classmates inflict on her because they don't really want to include her in their activities. One of the saddest moments in the book comes when she realizes that every one of her special ed classmates is kind, where the "normal" ones are not. Who really has the worse disability? The book was a quick read and fairly enjoyable. Wha...

Do Dots Family System

The original post was written in January of 2015. I wrote an update at the bottom of this post in March 2021. A few months ago, a friend of mine told me about something she was doing in her family to help her family function better. Her teenage autistic son had been struggling a lot so they had been working with behavior therapists to help him and this "Do Dots Family System" had been recommended. As she described it, I was greatly intrigued since it sounded like something I wanted to implement at my own house. I looked into it and decided to purchase it right after Thanksgiving. Here is my review of how it has worked for us over the last six weeks or so. The basic idea of the chart is that children need to take care of their responsibilities before they get any privileges. It strongly reinforces the concept of "Work Before Play" . The chart helps children see in a very visual way that, until they have completed their responsibilities, they are on Le...

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