Bedtime with feeding tubes and injections
Our daughter Maddison has never been one where we could just put her in a fresh pair of pyjamas and a clean diaper and lay her down to sleep. Because of Maddison’s disabilities, her nighttime routine is a little more complex. Getting her ready for bedtime includes some unusual steps; which includes a feeding tube and an injection. We recorded a video for our YouTube channel showcasing our nighttime routine for putting Maddison to bed.
I’ve put a link to the video in this post.
What makes Maddison unique
Maddison has atypical cerebral palsy. Which is an interesting take on the motor movement disorder cerebral palsy. Maddison’s condition effects every muscle in her body, causing her to have delayed, slow, and weak communication with her muscles. Because of this she has had developmental issues and feeding difficulties since birth.
Hooking up the tube
Maddison has a surgically placed gastrostomy tube in her abdomen. This has helped us be able to feed and hydrate Maddison due to her immature swallow since birth. Every single night of Maddison’s life, we have hooked her up her feeding tube at bedtime. At the time we made this video, Maddison was getting an over-night water feed to help with her hydration. This is because she cannot drink water herself.
Injections
Maddison has a growth hormone deficiency. What that means is that the part of Maddison’s brain that is supposed to make her grow isn’t functioning the way it should. Her body doesn’t produce enough of the naturally occurring growth hormone for her body to grow appropriately. Hence her extremely small size for her age. She got this diagnosis after a growth hormone stimulation test. So we inject her with the same kind of human growth hormone found in the body to help make up for what she is missing. This means, each night, around the same time, Maddison gets a subcutaneous injection of growth hormones. This medication helps Maddison’s body grow, and become stronger. Which has been able to give her the boost her body needs.
Watch the video now:
Click the play button to watch what our nighttime routine looks like for Maddison