Sunday, May 6, 2012

Nature Girl

Amelia is definitely my little nature girl.   I have a biologist friend from early in our days at Lejeune when Rafe was still flying Cobras that gifted her as a newborn with her very own fishing rod (which we still have, by the way).  I'm convinced that was secretly a fairy godmother touch, because she loves all things nature.  Someday we'll go visit this lovely woman and her children, because Bianca now lives and works in one of the coolest places in the United States - Yellowstone Park.

My fairy princess daughter regales me with tales of time at the playground playing with worms, and how some of the "mean kids" are not very nice to the worms.  She likes flies because they tickle.  She hunts ladybugs when she can and was seriously disappointed this year at the diminished ladybug population in our back yard.  She wants to be a dragon when she grows up and sometimes I wonder... 

Amelia and one of her little girl friends had an experiment feeding fire ants bread and once they all came out she decided to collect some in a tic-tac box.  Every time this little girl comes over, I give them both my stale bread, nuts, and anything similar and they throw it around outside and try to find what's left of the last stuff they put out.  I've never seen two happier girls, running around and giggling and playing with bugs.

She had a pet roly poly named "Holy Moly Roly Poly".  The name alone still makes me laugh every time I think about it.  I think Rafe tried to convince her to call it Rock and Roly Poly.  

 We have a dead fly in a dish right now because she's not quite done looking at it with a magnifying glass, although I am really ready to have that thing gone. There are cups everywhere in my house with dead bugs that she was certain would live this time with just the right addition of dirt, grass and Spanish moss.  I tried to throw one away today and OH. THE. TEARS.   

She's always outside digging in the dirt and making things out of sticks.  She recently made a stick house in one of my flowerpots, and sometimes takes my plants and decides to help me by planting them in the yard, where they promptly get mowed over by the lawn service.  She's undeterred, however, and is soon back at it.   She gets so tickled by helping me and is so proud of herself that I think a few brutally murdered plants are worth it.  

Amelia  has a Special Treasures box and it's full of  feathers and shells and rocks and even pieces of concrete that she finds fascinating.  We had it in a small box and it's now in a large shoebox.  I convinced her the other day to let me use some of her special rocks in the bottom of some of my pots, but it was hard work at first until she realized they would be more protected that way :)  

Recently we decided to try and have a vacation in Silver Dollar City on our way back from Texas to see one of my nephew graduate.  Gas is so expensive, we were looking to save money by camping out when we got there.  When she heard that we *might* camp, I thought she was going to have a heart attack from excitement.  She's never camped or fished before, but she has asked for both for several years.  Amelia went running down the hallway, hooting and jumping and running in circles.  

She caught a salamander in a jar earlier this week, but we convinced her to take it to school and then let it loose in the garden after showing it to her friends.  Tonight as we left the house for a walk along the water to see the stars and the Super Moon (her reward for helping clean the house today), she made me catch a tiny frog climbing the wall of our house.  Mia thought it was hilarious that the frog "pottied on Mommy!!!" but I'm still traumatized from frog urine in my face.  It's sitting on our front porch right now, waiting to be released back into the wild.  

She loves walks in the dark and looking at the stars.  Tonight with the breezes blowing and the moonlight shining off the water, I realized once again how lucky I am to have her as my daughter and how uniquely she is her own person. She'll take me places I would never go on my own (Frog hunting, for one) and I'm better for it.  

This is Amelia three years ago, when she was 2 - the same age Olivia is now. 

Friday, May 4, 2012

Not sure how I feel about this....

Earlier in the week, our speech therapist came by and we did some chewing "tests" with Olivia.  I had a plate full of things that were or had been difficult for her to chew and navigate in her mouth.  Dried apples, cinnamon coated almonds... things like that.  She was able to chew them all, finally!  Success!

But as the ST noted, she was noticably better at chewing on one side of her mouth than the other.  This led us to a discussion about how she's always had a better side - even the OT and PT have commented on weakness on one side.  We've had scoliosis checks and leg growth checks because she favors one side and her hip seems lower on one side; all to come out normal.  It was finally determined to be some sort of muscular issue of unknown origin.  But during this discussion, our ST asked us if we'd considered a neurology consult.

No, we'd never had.  Not until that moment.  We (I) had always put it down to the PIC lines put in her when she was born. She had to lay there with the lines on the same side, the weak side, for almost 3 months because they had such a hard time putting them in the other side.  Once in, they didn't want to move them.  I had always assumed that it contributed to a type of atrophy of some sort and she would always be just a little weaker.

But neurology?  Never considered it.   I had a quick visit with her pediatrician this morning, and he mentioned as well that he had noticed an asymmetry to her face that corresponded with the opposite side of her body that has the problem (which made sense after he explained it).  As he began to talk about it, he mentioned mild cerebral palsy as something that might be considered.

Cerebral Palsy.  Of all the things I've thought about, I haven't heard that word since her early days in the hospital.  When no one could figure out what was wrong with her or why she was so motionless, CP kept popping up.  Once it was determined she had Prader-Willi Syndrome, I never looked back at that possible diagnosis again.

Not even when we visited her endocrinologist last year - the one with over 400 Prader-Willi patients.  The one who is the specialist in this field, who researches PWS kids and helps us find new breakthroughs.  The one whose assistant said, in taking our history once again and hearing the list of traumatic things that happened during her first few months, "You know that's not ALL Prader-Willi Syndrome, right?"  It wasn't even a blip on our radar, because the symptoms mimic each other to a certain extent at birth.

I wish I knew why I never pursued that weakness more thoroughly.  I'm not sure we would have done anything differently with a CP diagnosis.  But for some reason, that possibility is hitting me harder than if she were to get a PDD-NOS diagnosis, which is another possibility soon.

So now we have a neuro consult.  And a gastro one as well, for other ongoing issues she is having.

Rockin' it!

"Mama!  I need to tell you something.  We're doing weaving at school and I LOVE weaving.  Love, love, LOVE it!!  At first I didn't know how, then Maddy showed me, and now I'm rockin' it!!"

I think Mia just said her first slang.  I loved how she said it.  It was so cute to hear it, yet gave me just a twinge of heartbreak because she sounded so grown up.  I feel very old-fashioned, which will come as quite a shock to anyone who knew me pre-mom.  Especially my own mother!  

Oatmeal a Million Ways

We love oatmeal in our family.   It's sort of like the pasta of the breakfast world - you can throw all kinds of things in it to make it tasty and fun.   I'm trying to clean out our freezer before we move this summer, so this morning a new concoction with strawberries, coconut and almonds found its way into the cereal bowls with much success.

My basic recipe is this:
1 cup thick rolled oats (Bob's Red Mill is what I use)
2 cup water (filtered if I remember)
shake or two of kosher or sea salt
1 tsp roasted Saigon cinnamon
1 tbsp dark brown sugar

The only thing I usually measure is the oats and water; the rest I generally shake in so the measurements are approximate.  I've measured a few times and written it down so I could post it, but I keep losing the bits of paper so here it is.  We like A.LOT. of cinnamon - both because it's good for you and it's tastiness helps negate the need for some of the sugar.  I like dark brown sugar for the molasses content and the added dimension of flavor.  Don't skimp on the cinnamon.

This morning I just threw in some berries, coconut and almond and stirred it in.  If I had time, I would have toasted the berries and almonds for more flavor, but who am I kidding?  I'll never have that kind of time.