Post by dixienormous on Nov 8, 2013 14:45:21 GMT -5
I really hate that my almost 3 year old is still so much a baby. And it always makes me fear where she'll be developmentally as she ages. Like, when she's 15 will she be at the developmental age of a 5 year old? It's a very tough pill to swallow.
Post by partiallysunny on Nov 8, 2013 14:52:29 GMT -5
Oh Dixie I don't know much about PFs medical history, but do you think at 15 she'd be that far behind? She's not to far behind right now, from what you just said.
I can see why this is so upsetting to you ::hugs::
Post by dixienormous on Nov 8, 2013 14:58:21 GMT -5
I honestly don't know, PS.
She had an in-utero stroke and has significant and global brain damage. It was in what's called a watershed area of the brain so EVERY center of her brain was impacted. A lot of the damage impacted her muscle control and, as you know, physical exploration of the world is how an infant/toddler develops and strengthens cognition.
Every issue that we've come across as been a direct result of the stroke. Her eye crossing issue (we're heading towards another surgery), her feeding issues - everything. I think it might be a little easier (probably not) if this was a genetic issue. That it was something truly a part of her. But this was a freak accident. If there had been no stroke she would have been a typical kid.
Dixie, I can't imagine how hard it is for you guys. You are doing everything you can for her, she's made leaps and bounds just in the last few months. You never know where she'll be in 3 years, much less 12 years--she might surprise you. I hope she does.
Post by partiallysunny on Nov 8, 2013 15:05:13 GMT -5
Oh, poor PF. I always assumed it was genetic. Poor girl.
So your petty much in uncharted territory, right? There is really no way to predict how PF will developed because a) this has to be rare and b) even those children who this has happened to, it effects different parts of the brain and therefore different developmental functions. Correct?
Post by dixienormous on Nov 8, 2013 15:12:49 GMT -5
Exactly, PS. It's uncommon but not super rare. But because it's brain damage it's a very wide and uncharted territory. And you're right, it is very different for every child/person. Just like a stroke in older people. Her neurologist can't give us any definites because he just doesn't know.
Post by partiallysunny on Nov 8, 2013 15:59:49 GMT -5
I think you're being pessimistic because of that stupid report. PF is doing great and we are all so proud of her and the progress she had made. I know you are too. No one knows what's going to happen next year, let alone ten or more years from now. Take it one day at a time, Dixie.
dixienormous it's a broken system. As crappy as the goals progress is to read, it will hopefully help you get the best level of service possible. Around here the school districts like to harp on "least restrictive level of service" and seem to try to lowball services. So my hope is that the progress on goals was written with an eye to that broken system.
Regardless, I know that was hard to read and I'm sure pretty much sucked. I hope that you give yourself chances to grieve. It's normal, and it's something you'll experience over and over with each milestone reached and not reached. You are an amazing mother and having negative thoughts and/or feelings about all of this wouldn't detract from it a bit. Huge hugs to you. And a big glass of wine.