Seriously? There’s an App for That?
For the past month and a half, I’ve been conducting almost daily interviews as part of the research for my new book project, Different Dream Parenting: Raising a Child with Special Needs. Every interview is a mind-expanding experience as parents and experts share what they’ve learned from their children and patients.
Factor VII Deficiency
Tiffany and John lost their third child, Ethan, when he was one week old. Before his birth, they had no idea they were both carriers of a recessive gene that caused a rare genetic bleeding disorder considered “incompatible with life.” Factor VII Deficiency. Their fourth child, Niki, was born with Factor VII Deficiency. She’s now 18 months old and receives Factor infusions every other day to boost her blood.
Smart Phones = Smart Parents
When I asked Tiffany how she keeps track of Niki’s complex drug regime, medical appointments and hospital procedures, she said, “When Niki’s in the hospital, I record everything on my laptop if I had time to grab it. Otherwise, I send an email to my computer from my iPhone. At home, I record everything on a large dry erase board, and at the end of the month, I take a picture of it with my phone and send that to the computer. And since Nicki gets the same drugs as hemophilia patients, we keep track of when to order medicine and supplies with a new app developed for them.”
Smart parents, huh?
FactorTrack
You can read about the app developed by FactorTrack at www.livingwithhemophilia.com. It is jaw-dropping amazing! I found the site by googling “iPhone apps for hemophilia.” So do the same with your child’s diagnosis or condition and see what you get. Then share your findings by leaving a comment. Wouldn’t it be great to have a resource page of apps for parents to reference? Together we can make it happen!
Wishing for a smart phone,
Jolene
Excellent suggestion, Jolene! Will spread the word via your RT.
That’s an amazing resource! You must be thoroughly enjoying all the new things families are sharing in those interviews!
Just wanted to thank you for the great resources and support you give through your site, twitter and comments at my blog. Looking forward to posting with you soon.
And check out this week’s post on my site too. I left you a little gift
Thank you, Barb. The mom who told me about it is amazing. I can’t wait to share more of her ideas in Different Dream Parenting.
Thanks for the mention, Laurie. And congratulations on the recognition you received. It is well-deserved. I am enjoying learning from all the parents & experts participating in interview for the new book. These are amazing people. What a blessing to partner with them.
Wow! You just keep getting deeper into our bleeding disorders community by the minute! Thanks for sharing these resources that I can remind others of… Tracking infusions is one of the time-consuming irritations of parenting a child with a bleeding disorder.
Isn’t the app just the coolest thing? I thought you’d like it. The gal who shared it is a phenomenal young mom with tons of ideas for organizing and documenting medical information. Doesn’t hurt that she’s a med tech at a health clinic!
Thanks for your very kind words, Jolene. And for this wonderful post! I am very excited to read the book. I think a resource page would be an excellent idea.
I also use another app called Personal Caregiver by imedic8 to track Niki’s medications and my own meds too. It can track multiple medications for multiple members in your family and you can include a profile pictures, too! The app alerts you when you’re due for a dose, if you’ve missed a dose, and when it’s time to refill medications. Anyone managing complex medication schedule can use this app.
Best of all…it’s free!
You’re welcome, Tiffany. Thanks for sharing your expertise. Many parents (myself included) aren’t naturally organized like you. We need suggestions for managing everything that goes along with caring for medical and behavioral needs. The app you mentioned in this comment will have lots of parents doing a happy dance!