Learning from my child!

Even though there is a lot of hard in life right now Alex continues to smile and find the wonderful in life. She encourages me to remember what is most important. She has started singing these lines over and over again and says it is her favorite song. When I think about what she is dealing with and then listen to her sweet voice singing these words it encourages me to have the faith of a little child. I am always humbled when my children show faith and courage that I often struggle to have myself.

Where you go, I'll Go

Where you stay, I'll Stay

I will follow you!

We got this therapy swing for Paul several years ago at the suggestion of his Occupational Therapist at Special Kids. It has been enjoyed by all of the kids but has been a life saver with Alex this winter. When she was first told to not bear weight on that leg last summer it wasn't easy but she was able to scoot and be wheeled all over the ground outside. I wasn't quite prepared for what a difference it would be in the winter but realized quickly that with the ground being so muddy and cold it would be much more difficult for her to be as active as she was before. We also spent a lot of time swimming during the summer months so she was able to burn off much of that Alex energy. We moved the swing from the girl's room to the living room in December and it has proven to be very helpful. She used it occasionally in the bedroom but since all of this began she does not ever want to be left alone so it works much better to have it in the main living area. Alex spends several hours a day swinging back and forth and singing, being read to, or listening to music or Grandmas audiobooks. It has been a really great way for her to be active and get some exercise without putting any weight on her leg.

The pain from her leg and mouth sores wake her from sleep at night but during the day she stays active with the help of the swing and playing with her brothers and sisters. It is difficult to know exactly what is going on or what she is feeling because she seems to have an extremely high pain tolerance. If she stays busy she manages everything well. Before we had the swing in the living room where she would spend so much time with it she would struggle more with wanting to be active and not finding a way to do that.

If you aren't familiar with the song she is singing in the first video here is the full song.