Our family needs help! We are unable to work and pay our bills without assistance with Ellie. We are struggling. Ellie needs full care 24/7 and during travel she needs two people with her at all times, one to drive and a caretaker to make sure she's safe and breathing well. Without help, Jeff and I must both be home to take Ellie to preschool and appointments.
I work from home most days but I cannot focus on my work and entertain Ellie and care for her needs while I work. It seems that I've only given partial attention and effort to so many aspects of my life because I have no choice but to multitask. I want to feel like I'm succeeding at something and to do that, I need to be able to focus and single-task while at work and while caring for and playing with my children. Jeff is dying to get back to work. He's desperate to get back to work he loves and using his engineering and design skills to build stuff in the shop. Jeff is a great dad and I know he loves time with our kids as much as I do but we aren't feeling fullfilled or successful because we aren't able to do the work we want to do to support ourselves and our family and to help our communities.
Volunteers are welcome however, we are able to recruit paid help. What we need is reliable help. We need fill-in private duty nurses to hire at Health Call, LPNs and RNs. We need respite care help and community living supports. Respite and CLS are hired through Washtenaw County Community Mental Health. The application process and training are fairly simple. There are no education requirements to be hired as a respite care or CLS employee. As a family, we need people who are patient with children, reliable, and can learn new skills.
Jeff and I, with support of family and friends, have been working hard (while we multitask childcare, building a home and caring for two homes) on a startup business, Savor Life Adapted, and on overhauling my nutrition consulting business, Savor Life Nutrition. We're driven and commited to helping people with families like ours. We're developing products and programs to help people simplify things in life that the average Joe never has to think about. We feel people shouldn't have to adapt so much to their environments but environments should adapt to people. It's time to celebrate diversity and who we are instead of trying to change ourselves to fit. It's just not always medically possible to change ourselves.
Anyway, if you're interested in spending time with us and helping out, please send an email. If you know someone who might be perfect, please share this post with them. If you don't know anyone but you want to help, please share this on social media, to your email contacts or on your church bulletin.
Thanks for helping!
To ask more questions or to apply email Courtney: email@example.com or send a message on Facebook.
Ellie has had so many colds and infections since the start of cold and flu season. It seems we just can't get back to normal. I've decided I'm posting reminders for everyone who cares for Ellie because her safety is too important to overlook even the simplest rules.
Hand hygiene is super duper important! It doesn't matter if you're wearing gloves to care for someone if you've scratched an itch or adjusted your clothing. If you've touched anything you've likely already contaminated your gloves with some kind of bug that should be inside a trach. If you've just washed or sanitized and you wipe your patient's snot, your hands are no longer clean enough to do proper/clean trach care or suctioning. This is basic but it's really amazing how many times I catch people doing these things without realizing they've even done it.
When in the hospital, I frequently see hospital staff answer their phones or pagers with gloved hands while in Ellie's room. EVERYTIME I ask them to please wash and reapply clean gloves. ONE time I didn't do this and I feel guilty to this day because that was the admission Ellie picked up Klebsiella on her second culture after being inpatient. I am Ellie's #1 advocate and if I don't protect her from even well-meaning caregivers then I'm not doing my job well enough to keep her well. I can't sit idle or be shy because someone with more training in trach care or medicine isn't following basic hand hygiene rules.
The following sign is now posted in Ellie's bedroom as a reminder for all of us at home. I hope it helps and I hope she stops getting sick! Enough of this crud already!
Are you a trach parent living the #TrachLyfe? What else do you do to protect your precious loved ones? Please share! Feel free to download and print or share this flyer. I hope it can help someone else prevent an illness and hospital admission!
It's hard to believe Ellie is 3-years-old already. It's hard to believe we've been living life with a mini emergency room that travels with Ellie everywhere she goes including from room-to-room in the house and to the backyard to play for almost 3 years. It's hard to believe we've given up privacy and quiet family time to welcome help and nurses into our home and our family for 3 years.
To be honest, I wasn't looking foward to this day. I was afraid of dealing with my mind swirling with the excruciatingly painful images and emotions of Ellie's first day and week of life. It was a really dark place for me. I was afraid too because I recently went off my anti anxiety/anti depressant medication that I was prescribed in the first week of Ellie's life for "situational depression". I wasn't sure I'd be able to handle today without it. I'm happy to say, today has actually been okay. I think the happy memories and experiences finally outweigh the sad. We've had so much to celebrate and so many little milestones that it's almost hard to believe Ellie was as fragile as she was.
Our family accomplishments with Ellie as a 2-year-old
3-year-old Ellie is going to accomplish so much more!
Courtney is Ellie's mom. She and her villiage have been raising Ellie (and her big brother Nathan) and learning how to live with and manage life around Ellie's physical disabilities and special needs. It's not easy but our villiage is amazing. Thank you to all of you who support us, love us, and provide hope, wishes and prayers.