A couple of days ago I posted that James’ appointment to have ear tubes put in was canceled the day before the surgery. Their reasoning for cancelling the appointment was because they didn’t get all of the paperwork they needed. They had an entire month to get all of the…
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,…
When you have a normal child, you can easily follow their progress through milestones. You know when they should start doing certain things. By this age, they should be doing this. By that age, they should start doing that. But when you have a special needs child, you quickly learn…
Back in October when James when James was still in the NICU, the ENT noted that James has some fluid in his ears and that fluid might be part of the reason why he hasn’t passed any hearing tests. Unfortunately, James was too young back then for ear tubes to…
*Updated March 17, 2010 with additional pic.* James has some muscle tone abnormalities and is unable to hold up his head. We were at Stacy’s parents' house for St. Patrick’s Day and tried to put James in a Bumbo. For those of you who are not familiar with a Bumbo,…
Okay so I had to post this. Last night I was holding James on the couch and dozed off. Stacy was getting ready to take a shower and snapped this picture of me sleeping while holding James: When she got out of the shower 20 minutes later, this…