Uncertain Beginnings…..Part B

When Ben was about three or four months old I started to notice a pattern in his breathing while he was sleeping.  It went like this....breathe, breathe, breathe, stop...repeat.   At that point I brought it to his pediatrician's attention.  "I'm worried about his breathing" I said.  "He keeps stopping, then it seems to restart".  She did [...]

Our Superheroes wear Fezzes

Ya, I know you think I misspelled that, but I didn't!  The plural of fez (a flat topped hat) is fezzes or fezes.  I thought fezes looked pretty similar to feces, so I opted for the first spelling and "Our Superheroes Wear Feces" is a way different story than I intend to tell at this [...]

Valentines Day

Today was super awesome!  This morning before anyone was even awake my mom and I dropped off candies and Valentines at everyone's door.  After breakfast, I went to school, but in the middle of school some people from the Starlight Foundation came in and made cupcakes with us.  The main cooker was a clown named [...]

I’ve got wheels!

This morning  the medicine they gave me to make my back hurt made me get sick.  Mom said I had to sit in my wheelchair today and I didn't want to.  I was scared of it hurting too much, but I really liked sitting up and I stayed in it all afternoon.  I even got [...]

Rough Day

Ben had a bit of a rough day!  He's hanging in there, but the pain for him can be overwhelming at times.  We are trying a lot of different medications and combinations, but it can be tricky to stay ahead of it.  Surprisingly, the halo on his head - picture a steel bowling ball frame [...]