Friday, March 16, 2012

Words & Sounds

I'm going to try to keep an updated list of Marley's words. She has far more than I thought she did once I sat down and thought about them. She doesn't always articulate them anywhere close to being understood- they sound more like sounds, but I know what she's trying to convey- and the fact that she's communicating with sounds and words is AWESOME, right!?

No, no, no!
Shhhhhheeeew! (As she waves her hand in front of her nose because she's stinky!)
Thank you

I'm so thrilled!

Thursday, March 15, 2012

More Awareness, Please?

You know how we don't have as much awareness about hydrocephalus as we'd like to have? How many people just don't understand what we're talking about? Well, each and every older lady in my town knows what it is. If you say, "hydrocephalus," they have no clue. But if you say, "water head baby," then they know exactly what you're dealing with. In modern times, if you say any term, people don't know what you're talking about at all.

I was in Wal-mart yesterday with Marley and Vincent, and in the check-out line behind me, and elderly lady was telling Marley how pretty and precious she was, getting little smiles. She asked me about Marley's helmet and why she had to wear it. So, I told her that basically her head was shaped differently and it was caused by her hydrocephalus. She said, Oh I'm sorry I've never heard of that. Then, surely enough, I repeated myself, "water head baby." And she nodded and said, "Oh bless her poor heart." I told her that Marley has a shunt to help drain the fluid, and she said, "Thank goodness they've come up with a way to treat it." She looked very sad, as if she'd had past experience with it. I'm thinking that people are now less aware because it is treatable, and the fact that people back then never had abortion as an option. I think most congenital cases are aborted before they're ever even given a chance.

Tuesday, March 13, 2012

Vincent's Third Birthday, Brake Failure, & First-person Chiari Encounter

Today was Vincent's THIRD birthday!!! My, how time flies. We had his party on Saturday, and I will blog about that day another day, when I have better time. Today was a little awkward, so here it is.

My big boy on his third birthday!

So today started out like most Tuesdays. I got up, fed the kids breakfast and prepared to leave the house around 1 PM to have them at therapy and Josh to work by 2PM.

On the way down the highway, I noticed the brakes felt "off." They just felt weird and sort of delayed. Josh told me he thought it was all in my head, then about 10 seconds later the brake light turned on. So when we got to his work, we bought some more brake fluid and filled it up. All was seemingly better, the brakes no longer felt funny to me.

So off to therapy we went. Both Marley and Vincent had great Tuesday sessions. After therapy, I went to Marley's SMO appointment and she was fitted. Upon leaving the appointment, the brakes started acting up again. This time, I would have the brake pedal to the floor, and the car was NOT stopping. It was very scary! Lo and behold, to my right was a building that read, "AUTO REPAIR." How lovely.

So I pulled in, and was wonderfully greeted by a smiling face. The auto repair place I was at was Griffin Brothers, which I will simply add right here, if you ever need car help, you're in great hands there in the Pineville, NC location. They have free fountain sodas, free canned sodas, and free fresh popcorn. They have a children's play room which includes toys, a train table with tracks and trains, coloring books & crayons, books, and a TV playing cartoons with comfy chairs and a bean bag chair. In the adult area they also carry fresh coffee, comfy chairs and a TV playing the news. I can't stress enough about how friendly the guys are there. It's really a great place. The man at the counter took my car back and got us fixed up. We had a busted wheel cylinder, so the fluid we put in earlier drained out again. If I had kept on going towards home, my car likely eventually wouldn't have stopped at all. I am thankful to say, it is completely fixed now.

So in the waiting room, I met a woman. She asked me about Marley's helmet, so I explained hydrocephalus to her, and she instantly looked interested. Then, she stood up and showed me her surgery scar from 2006 and said, "I'm a zipper head, as you can see. I just had a chiari decompression surgery a few years ago." As it turns out, she sees a neurosurgeon from the same practice Marley goes to. Small world? Always seems that way. She went on to explain her symptoms... she had a migraine that lasted for 3 weeks, constantly had body tremors, ringing in her ears (which has never gone away,) and severe balance issues. She said her cerebellum was 13 mm into her spinal canal, so I'm not sure which level of severity that equates to. After hearing the success of her surgery, it really inspires so much hope for my little buddies Owen and Kadyn, who are undergoing this same surgery in the not so far future.

Friday, March 2, 2012

Helmet Chick

Marley got her awesome new orthotic band to help with her head shape and slight facial asymmetries. Of course we got plain white so we could decorate it!! Her eye follow up lasted about 5 minutes... and we were told they're perfect! So many blessings. :)