Healthcare Handler
Mommy and Sayla finally got a night away together this past weekend, even if it was just for a sleep study! Sayla thoroughly enjoyed having me all to herself on our getaway. She has been diagnosed with severe sleep apnea, and her pulmonologist wanted to do this particular sleep study to see if her apnea improved with oxygen titration and/or CPAP.
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I am a planner by nature, but while taking care of Sayla and all of her medical needs, plans are bound to change, and we have to be flexible. It’s not easy, but we don’t have a choice when there are extraneous factors affecting our plans that are out of our control. Especially right now, in the middle of a pandemic.
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It is the 8th annual worldwide Feeding Tube Awareness Week!
In order to raise some positive awareness, I thought I would share with you our feeding tube journey with Sayla. We get a lot of questions regarding her tube, especially from children. We hear questions like, “What is that?” “Does it hurt?” “Can she have chocolate milk in it?” “Why can’t she eat with her mouth?” We love answering questions and want to educate others as much as we can.
“Girl you my Hunny, cause you’re busy as a bee.” – P Diddy (the hubs)
January has been packed full of both exciting and scary stuff. This mama has been running nonstop. We finished off this month strong though with a day full of procedures for Sayla at Cincinnati Children’s Hospital Medical Center (CCHMC).
Sayla had three procedures done under anesthesia. We are so thankful the physicians worked together and that the scheduling department was able to organize it all on one day! Below is a lost of her procedures and outcomes:
I have heard many times “I don’t know how you do it all!” Special needs child, infant who breastfeeds, work, maintain household, organize Sayla’s healthcare…list goes on. Truth is, I don’t do it all, I have help. I didn’t always have help, but I will spare you the ugly details of my life before help existed! We do not have family that live close…not even in the same state, so finding help has not been easy. I don’t like to ask for help. Could be a pride thing, or I don’t want to bother anyone, or it could be that I’m a control freak? But I just cannot do it all on my own.
