When James was in the NICU, they were never able to get a good hearing test so we eventually decided to wait until he was out of the NICU to get his hearing checked. A couple of weeks ago we took James to an audiologist down at Children’s Memorial in…
James had his first haircut today. I don’t remember my first haircut, but I have seen the pictures. I was sitting in a highchair in my grandma’s basement. Since James isn’t able to sit up on his own and can’t hold his head up, putting him in a highchair wasn’t…
Traveling with a disabled child is a bit of a challenge sometimes. It’s not just a car seat and a stroller. It’s a car seat, a stroller, the pulse ox, and the suction machine. And if we happen to be travelling during a feeding/med time, it is also the feeding…
Since we’ve become part of the ‘special needs community’, we frequently come across special needs related stuff that we would otherwise just scroll right past. I guess it’s kind of like when you’re looking for a new car and like a certain make and model. Then you start seeing them…
James has been getting really good at lifting his head. This may not be a big deal for most parents, but this is a big deal for us! The video below is about 6 minutes long; he first four minutes is me assisting him in lifting his head. At around…
As some of you may know, our first son, Jackson, was diagnosed with Trisomy 18 and passed away before he was born. In Trisomy 18, the baby receives 3 copies of chromosome 18 instead of the normal 2. This extra chromosome 18 disrupts the normal pattern of development that can…
Colin Raye, a country artist, wrote a song about his granddaughter Haley that hits really close to home. She has some sort of regenerative neurological disorder, has respiratory issues, and needs to be suctioned frequently. In an interview with The Boot, Colin says “In life, bless her little baby heart,…