Tuesday, June 19, 2012

What's The Hardest Thing?

Many of you are parents of children with complex medical needs, and I have a question for you:

What's the hardest thing right now in caring for your child? Is it:

Sibling issues?
Doctors & appointments?

Be bold, and if you have a dream solution to any issue, share that, too.


Next post we'll discuss what's the best thing about parenting our kids.


Rebecca said...

right now it would have to be medical and mobility related.

Jean said...

Thanks for posting, Rebecca. Tell me more about the medical/mobility things you're thinking about.

For me, a lot of my frustration was not knowing how to titrate her hydrocortisone doses. Sooo frustrating. I always felt I was a bit behind. Which was the fact.

In the summer, it was hard because I felt like she needed more stimulation (therapy) than I either was giving her or COULD AFFORD to give her.

Anyway--let me know what you're thinking about.

Anonymous said...

My daughter Sydney is AI recently diagnosed at 12. She has a combination of deadly cocktails including bronchiectisis, Ciliary Dyskenisia and AI. Before the diagnosis I was wondering what was next, it can't be that good to have this much steroid in a little body. I feel there is not enough support here, and I am scared of sending her to school. If she gets even a sniffle it is pneumonia due to the other health issues and with no and I mean .01 cortisol in her body at test times it only got as high as .02 which is none. Sydney is a great danger. Without the proper education, and lack of caring at the school level I fear for her. So, I would say school is my issue. Thank you for this blog

Jean said...

You're welcome-thanks for posting!

Yes, school is a huge risk, and it was for Annie. Does Sidney have a care plan at school? With the physical challenges she has, she should qualify for some close medical supervision at her school. And if you feel like it isn't close enough, you might decide to homeschool her.

Thanks for posting...parents of medically complex kids do face life-threatening situations each day. It does wear on us, not to mention our children.