Tuesday, September 24, 2013

Kindergarten and More

Psssst:  Did you know I'm giving away The Earth Child's Handbook, Book 1 & 2, over on janetcallahan.com?  Giveaway ends October 1, so go enter now!


Ai yi yi, what a month. 

Acorn started kindergarten:

It's been quite an adjustment, all in all. New building, new rules, new people, new schedule, packing his lunch every day....but it's gone well. Acorn's aide (he has 1:1 support all day) signs, which has been a huge thing for him and for us. We're going to meet all the therapists next week, and discuss whether there need to be adjustments to his IEP.

Also, Leaf finally got AFOs, after arguing with one doc, getting SMOs that no one thought actually did what they needed to do, arguing with the doctor again, and changing doctors:

We've also had a UTI (acorn), a bout of atelectasis (Leaf), exhaustion (mama and daddy), and generally kept our heads above water.  What a concept!

How's your school year going?

Monday, September 2, 2013

We Know Too Much

I had something else in mind for today, with school starting tomorrow and all, but it's been a rough couple weeks amongst our special needs friends.  We'll get back to school stuff later...


We know too much.

We know that every surgery has risks, and we know people who've seen them first hand.

We know that surgery is sometimes (more often than we'd like) our only option.

We know that an ominous silence after someone posts "heading to the hospital" isn't good.

We know when a friend says they're taking their child to the emergency room whether it's likely to be a short stay or not, based on the issues presented.

We know, because we know them and their child, whether that stay might mean not coming home at all.

We know that those blog posts with cryptic titles usually mean nothing good.

We know which ER to go to in our area, based on what we need and what doctor our children need to see.

We know that we often know as much about our children's specific issues as the doctors who care for them.

We know that as a group, moms and dads of children with medical issues are often smarter than doctors.

We know more than the EMTs who come when we call 911.

We know that the nurses who work in our homes are a blessing and a curse.

We know that hospital nurses likely don't know much about some of the things that are our daily lives.

We know what many diseases entail, even if our children don't have them, and we weep with friends when their children are diagnosed, because we know how the story will end.

We know that doctors are people too - they're not gods, they make mistakes, and they don't know everything.