A friend of mine shared something on Facebook that I wanted to pass on: Check out this link. The health sector spent:$544,367,861 on lobbying for health care. Wouldn't that money be better served on helping the American public (8 lobbyists per member of Congress). I have a little friend, James…
James had another EEG today to see if the ACTH injections are working. Unfortunately, the EEG showed only a little progress, so the neurologist wants to increase the dose from 0.50 mg to 0.75 mg once a day. We’ll follow up in another two weeks to see if the increased…
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 part of early intervention (EI) in the state of Illinois, James gets many therapies. For occupational (OT), physical (PT), and vision therapies, the therapists come to the house, which is really nice. Unfortunately, they don’t have a speech therapist that comes to the house, so James has to go…
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,…