Long weeks

Just venting a bit. Rose has had three craniotomies, most recently summer 2011. One-year check up last week. Radiologist read angio and said there is a persistent or regrowth of her AVM. We saw neurosurgeon the next day. He said there is nothing wrong and that she is fine for 5-8 years. How on earth can two doctors look at the same images and come to opposite conclusions???

As a mom, the idea of a fourth surgery in four years is upsetting. That’s an awful lot to throw on a 10-year-old. The poor kid doesn’t even haves chance to fully recover before she needs more surgery.

Our whole family needs a break. We need it soon.

Thanks for letting me vent.

Tina, it is an awful lot to throw on a 10 year old, and an awful lot to throw on her parents, too. Give yourself a set amount of time not to think or plan about the next step. Give yourself permission to take a break from focusing on this and just live for little while. You need to recharge now -- I'm sure you have been running on adrenaline for a long time. When you feel ready, send Steinberg the latest scans, and see what he has to say. I'll pray he says there is nothing more to worry about.

As an adult pt. having had 4 surgeries in a 25 yr span, I can only imagine the nightmare it's been for your daughter, yourself & family and my heart goes out to you.
As dancermom suggested, give yourself permission for a 'break' until everyone feels ready to get back to whatever needs to be done.
Dr. Steinberg is also my NS - a uniquely WONDERFUL, brilliant, caring & exceptional dr. as you already know! :) Hopefully his review of your daughters films can give you the peace of mind & reassurance you need.
Take care & best wishes.

Oh Tina. You must be so frustrated by now. Please know that we are all thinking about you and your daughter Rose. Sending more positive thoughts your way!

Thanks, everybody. Yes, good news from Dr. Steinberg would give us some much-needed peace of mind. A brain injury is tough enough for a little anybody. We need to be able to focus on letting her be the most she can be.

A brain injury certainly is a silent epidemic. Nobody at her school and none of our relatives believe she has any deficits. If I say she has a disability, they argue. School hasn’t given her any academic supports. She comes home frustrated and short-tempered. She can’t handle light, noise or crowds. Gee, that should make fifth grade a breeze (not)!

She has had one craniotomy every year since 2009. I don’t think her poor brain has ever had enough time to really heal. Here’s to prayers for a clean bill of health so we can focus on other things.

Tina, I pulled my kids out of school when it was clear it was no longer an appropriate environment for them and homeschooled them. Three years later, my son is thriving at a performing arts high school; my daughter is still home doing virtual high school, because that works best for her. When public school becomes a problem, it may be time to ditch it. Private schools can be more accommodating but put a strain on the finances. Homeschooling is a good match for TBI, as you can adapt it to what your daughter needs, but can also be emotionally draining for parents who are already stressed out. You can fight the public school to get your child's needs met, but sometimes that is more emotionally draining that homeschool.

I looked up Iowa homeschooling law -- if your child gets approval as a special needs student, you can still use the therapeutic resources of your local public school without her being enrolled. If you choose a "supervising teacher" option, your daughter does not need to do any testing in homeschool; a school teacher would evaluate a portfolio every year. If you homeschool entirely on your own, your daughter would need to be tested each year, which might be too much pressure. Here is the analysis of Iowa law, in case you are interested: http://www.hslda.org/laws/analysis/Iowa.pdf

If you choose to keep her in public school, I have some ideas for that, too. You will definitely have to go over the nurse's head and have frequent communication with the principal, getting notes from your doctor as backup. School nurses are often minimally qualified. Your daughter should also have specific instructions on her IEP plan about what to do for headaches, etc.