Dylann 5 days old

Dylann 5 days old

Monday, October 27, 2014

More tests.

Dylann had a long neurological appointment last week. He is pleased with her progress overall and she's doing everything she should cognitively. He seemed puzzled about what caused her AMC. He ultimately decided that he wants to do a MRI of her brain and spine. He expects her brain will look fine but he's wondering if she had something congenital happen to her spine/lower back that caused some nerve problems to her lower legs. 

The thing that's not so fun about this is she needs to be sedated for three hours to do the procedure. It's scheduled for 11/18. Not looking too forward to that.

He wanted the results available prior to her genetic appt scheduled for 11/20. That way if it's normal she will probably do another test as he's thinking the only thing left would be something genetic that hasn't been found yet. They would probably do a full genetic mapping on her that can pretty much tell you anything about what she currently has and what she's genetically wired to have in the future. We had a long talk about this as I don't want to know some things. I'm too much of a worrier to know possible things she could get when she's older. So we have to make some decisions of what we want disclosed and what we don't. Amazing what they can do nowadays. I'm just not sure what it would change as far as our interventions at this point.

Otherwise we are just starting to plan her first birthday next month!

Friday, October 17, 2014

Good news... What?

We finally have great news lately!!  Dylann started feeding therapy and has improved her eating dramatically! Her OT even told me her pincher grasp and what she observed in her development from fine motor standpoint are like a 15 month old. What??? We never hear that lol!

She has PT 1 to times a week now which is much more than we were doing. They think she's going to crawl soon!! Albiet a modified crawl, but it's a crawl!!

Now today we just saw her ENT who told me she can now hear out of both ears AND that he does not think she has a small chin which her neurologist put in my head last month. 

I love good news appointments! For those of you who came to Dylann's dash that was a Huge success and I thank all of you. 

Now we are dropping the kids off at my cousins for the weekend and having an anniversary staycation!