April is Limb Difference (or Loss) Awareness Month. During this month I like to share experiences of my 18-month old daughter Livy, who was born symbrachydactyly. That’s a fancy word for having a limb difference on her left hand. We found out about Livy’s diagnosis when I was 20 weeks pregnant. Initially I was devastated
I have always believed that knowledge is power. In most instances I have found that the more information I have about a particular topic, the more at ease I am, my anxiety drops and I feel more in control (which in reality isn’t always the case so just go with me on this). However, I’m
Because then at some level, I’m admitting she is and will always be different.
Boy did “Annie” ever have it right! [Parenting] is a hard-knock life! (Side note: just to be clear, I mean the “Annie” of 1982 release). It’s only now officially spring, but we’re already in summer camp planning mode – as I would think most parents are about now. This is the first summer that Gavin
When I can’t come up with anything good to write about, I go back and look at the things I wrote to myself in the height of the hardest period of my life – the first year after my first-born was first born and diagnosed with Down syndrome. It was a pretty dark time for
When you’re a mama to an only, particularly one with a diagnosis for which social deficits go hand-in-hand, it’s easy to become a bit obsessed with scheduling time for him to hang with friends. Martin Luther King Jr. Day–that one January school holiday and a day when my office is closed–has been a great day
To quote Dr. Seuss’ The Grinch “Tomorrow is Christmas! It’s practically here!” Now while it’s not THAT close, the reality is there are only 10 shopping Fridays left till Christmas (you’re welcome). As much as we may want it to, time doesn’t slow down, stand still or even go in reverse. Not even The Grinch
When we first started our journey with Gavin and his diagnosis we didn’t know anything. Well aside from the basics of him being a baby and how to care for him in terms of feeding, bathing, diaper changes, etc. But beyond that –when it came time for specialist and therapist appointments and specific questions we
We got some amazing news yesterday!! Gavin had his height/weight check-in and (drum roll please) he GAINED weight!! Now while this may seem like a no brainer let me assure you it has been a battle. About a year and half ago Gavin’s body went into protection mode and shut down so he stopped gaining
Earlier this month Gavin had his second sleep study done. Since my husband took him to the first one last year we thought it best if I take him this time. The first sleep study results just didn’t seem to jive with what we were seeing or hearing at night so we decided to get
