Monday, December 30, 2013


Sometimes Maia will not stop talking. Here is an example of what comes out of her mouth, and yes, it is often in random order and only halfway decipherable but I will leave out the jibberish parts.

"Mama! Big hug mama. I ride horse! Wif Dora! You ride camel like Diego. Go fast, really fast. OH NO! There a wolf coming. I gonna get you, I gonna get you wolf....tickle tickle tickle! I want raisins. I do myself. JD NO! NO! JD! NO! Where Debbi? I go in Mama's car. I drive. I sit Mama's side. JD what you doing?

Where Gretchen? Leah? Jamma Baby? Jasmine? (*Note: her treasured babies) No, I do myself.

I want go see Shamu. I want take bath. Mama, me watch Dora? Watch show? Dora! One wif horse. I wook out window and what I see, popcorn....Where my horse? No, purple horse. I have ice. Mama may I milk pease? JD NO! NO! JD! JD NO! I talk grandma on puter. I talk Papa puter. I go airplane with Kay-Kay. I see dog. Mama ride el-phant wif me. I go upstairs Mama, I take nap. Mama take nap wif me. Where Gretchen? Leah? Jasmine? WHERE MY HORSE? Guess what? Mama what you doing?"

New hilarious material every day. Love it.

Tuesday, December 10, 2013

My Little LMMer

I've been active this year on a Facebook group of about 70 other parents of lipomyelomeningocele children. They abbreviate the condition LMM. Through this group I have learned that there are families all over the world dealing with the unknowns of this condition; that there are a lot of toddlers needing significant help/intervention to learn how to walk (Maia has had zero problems with this);  and that the traumatic experience of her diagnosis and her two surgeries (one untethering, one to clean out a bad infection) are not uncommon and many other parents have almost identical experiences. It's been really great to connect with other parents and hear their stories.

We just had our annual checkup with her neurosurgeon. She looks great! She is doing incredibly well. Hopefully now that she is talking more and more, she will be able to communicate symptoms that she is experiencing and alert us to a need for another surgery before there are any irreversible problems (like loss of bladder control). Some kids need additional surgeries to prevent further problems, some don't, and her doctor said there is really no way to predict which is which. Living with that unknown has made me realize that none of us really know when something will happen that will irreversibly change us, and the practical realities of living by faith day to day. Maia might have health problems from her condition, she might not. As I watch parents with their kids at CHOC when we are at these appointments, I realize that any of us may be in their shoes someday - I'm just more aware of that vulnerability because my daughter has a diagnosed condition.

She got the green light to work on potty training (just bought what is hopefully my last box of diapers!), jumping on the trampoline, running, jumping, and being a normal kid. She was talking about Papa's boat during her appointment and it turns out her neurosurgeon is a fan of sailing so she especially got the green light to enjoy the ocean. :) With a life jacket of course.

Monday, December 9, 2013

thanksgiving, friends, four naps, five books, and a little bit of winter. 2013 has been one of those years that didn't kill me, so I must be stronger (right?), so it was nice to spend a week away from it all. And let's face it, there's nothing that will make you feel more thankful than spending an entire week having your mom take care of you and your two darling toddlers. :-)


 Drinking hot chocolate and watching the lights come on for the first time this season at Temple Square. The kids loved it while their attention span lasted.

 Watching the nativity with Grandpa

 I have so many memories as a kid at the excited to share snowy winter wonderland with the twinners. They weren't thrilled about the snow when we were there last January but liked it a lot better this time, mostly thanks to the new gloves Grandma bought. :-) There wasn't a ton of snow but we're from CA now so even a few inches is fun.

 My Thanksgiving turkey. Don't worry, we didn't eat this one.

 How lucky am I that one of my best friends flew down and met me in UT for Thanksgiving? We had a great time and the only downside was I missed her more than ever when she left to go back home. :-(

 JD trying to pull me in the sled with a little help from Grandpa. :-) He is so dang strong, give him a few years and he'll really be pulling me all by himself.

Gorgeous. My family has been coming up here since the 1950s. No cell reception, no land line, no internet, no city lights...there are not many places in the world like this anymore.  

 A boy and his sled. "I do myself, Mama." And he did.....

Having fun with Grandpa