Well, as you might have figured out by now, we spent our very first family vacation at Disneyland. We were able to take this trip thanks to our awesometastic cousins, one set who gifted us with park hoppers, and the other who arranged hotel reservations for us. We are so grateful that we got to take some time to step away and just be a little family on a little vacation. I love that in LA you don’t have to stray far from home to have a great weekend getaway.
And we did! We had a blast. On Friday morning we had breakfast with my grandparents, who live closer to Disneyland than to our home. I am so psyched that we got to see them – they had not been able to visit with Leah since she was discharged from the hospital and have been aching to see her. They were delighted to get some quality time with the little Bug. My grandma didn’t want to give her back when lunch was over!
On Friday night, we headed to the park to meet cousins for dinner, but first we stopped at City Hall to deal with some administrivia involving disability accommodations for Leah and for myself. Rant at the end of this post – feel free to skim or skip.
Anyway. Thankfully the issue was resolved. In general, we found that the cast members were really hit and miss about being sensitive to disability issues. We got trapped in the line at the train station because the wheelchair entrance wasn’t clearly marked and there was an access door at the entrance to the platform – but by the time we realized there was a separate entrance for the accessible car, we were trapped in line by 100 other people and there was no way to get out of the line without mowing them down with Leah’s stroller. The cast members were not apologetic at all and said, “Next time, use the wheelchair entrance.” Hello – we tried! On the other hand, I was impressed at Minnie’s house; I asked Minnie to not *touch* the baby during our family picture because of her special needs and immune issues. Before taking pictures, the photographer double-checked to make sure that using the flash was okay. Most people wouldn’t think to ask about that. It was fine to use the flash, but I’m glad she was conscientious enough to ask.
Here are a few of my favorite moments of the trip:
1) Leah’s face during her first time on “Small World.” She spent half the time looking around at all the bright colors, and the other half staring up at Mandy in adoration: “DOLLIES AND BRIGHT LIGHTS! YOU ARE THE BEST MOMMY EVER!” She was so sad when it was over.
2) Leah’s second time on Small World: She fell asleep in my arms during the wait, slept soundly through the ride, and then cracked open her eyes with a bleary greeting to the world just as we were pulling back into the daylight.
3) Flying baby! Leah LOVES to be held up in the air like a little flying baby! She grins like a little goofball. She flew all over Disneyland!
4) Leah got charmed by a magic wand. She started crying in one of the stores and suddenly a cast member appeared out of nowhere with a magical light-up wand, which silenced her instantly. Our first question: “Where can we get one of those?” Ha. I wonder if that cast member’s job is to make sure there are no screaming babies in the stores. Mission accomplished!
We also took Leah on the Haunted Mansion, the Mark Twain riverboat, Peter Pan, Snow White and Alice in Wonderland (plus the train, as I mentioned). Leah’s favorite part of the dark rides? The magical glowy polka dots that appeared on her mommies’ shirts when the black lights came on (we were wearing red shirts with white spots). Ooooooh!
For us, it was interesting to experience Disneyland not only as mommies, but as mommies of a child with special needs. I think there develops some sort of new radar – like “gaydar” but for special kids – and somehow you just sort of notice people more frequently. Maybe it was the little “Please wash your hands before touching mine” signs on Leah’s stroller (from the RSV shot clinic) – we probably had almost as many people making exclamations over those as we did over the baby! One mom asked us if our insurance had covered the RSV shots – her little girl has cystic fibrosis. Mandy met two moms in the baby care center whose little ones also have g-tubes. It turned out one of them was born with TEF/EA! Not Type A, but still pretty uncommon! So random and cool. We also spotted seven different people with Down syndrome over the course of the weekend. Curiously, only one of them was a child. Not quite sure where to go with that detail but I suppose there could be many reasons.
So anyway, yeah – we had a blast at Disneyland. It turned out to be a pretty popular weekend – the Tinkerbell 5K, 10K and half-marathon took place each morning before the park opened, and apparently Sunday was an unofficial “Dr. Who” day, so there were geeks EVERYWHERE. I spotted a guy wearing the “And then Buffy staked Edward. The End.” shirt. LOVE.
It was also a pretty dirty weekend. There were kids sneezing all over the place, and nobody seemed to wash their hands. While we were at lunch I saw one little girl at the next table sneeze, and then her dad helped her blow her nose into a napkin and then threw the germ-ridden napkin onto the table. OMG. We carried disinfectant wipes everywhere.
On Sunday night, our cousins took us out to dinner at the Jazz Kitchen for my birthday. SO YUMMY. Probably one of the best dinners I have had in a very, very long time. Leah slept through the whole thing, even after the band started playing. The perks of having a NICU baby, I guess. She really does sleep through almost anything.
Other things going on this week:
-Leah ate about 2 teaspoons of sweet potato at her speech therapy visit!
-We had Leah’s assessment interview with the county office of education, which provides some services to kids with special needs.
-Mama got the stomach flu. Yeah. We worked so hard to keep LeahBug away from the germs, so they got me instead. Better me than her, for sure – but it was definitely no fun. I spent all of Monday in bed with fever, aches and chills.
-Last week, we brought Leah to meet our IVF doctor! She slept through the whole thing, but it was still very sweet. In her sleep I just know she was thinking, “Hey, thanks for making me!”
Exciting things happening next week:
-SWALLOW STUDY on Monday!!! They will do a video swallow study to examine Leah’s swallowing function and see if she is ready to really start taking in some food orally.
-Regional Center meeting on Wednesday! We will meet with Leah’s service coordinator and hopefully get this show on the road! Leah’s Kaiser OT appointment was just cancelled for the second time in a row, so she basically hasn’t had any OT services in nearly two months. It is absolutely ridiculous and unacceptable. Once we have this meeting, the Regional Center can start setting up therapists for Leah and her services can begin.
-Disneyland. Yeah… we have one day left on our park hoppers, so we are going to go back for a little day trip when it’s less crowded and do some of the things we didn’t get to do the last time because it was a holiday weekend and very crowded.
So that’s it! Pictures, followed by rant. Enjoy. Ha.
“Oh look, a foot!”
Silly girl has her leg!
OMG. NOBODY TELL BABY. When we were in PICU, one of the nurses told baby that some imaginary nurse was making her do all the awful things she had to do, like replacing the repogle or helping with blood draws. I named the imaginary nurse “Fabio” because all the other names I suggested already belonged to real nurses.
Here’s our vacation!
“Rumor has it we’re going to Disneyland. Allow me to share my feelings.”
Let’s look at that up close
And a little closer…
BabyPie checking out our bed
“I’m comfy, Mama. You take the crib tonight!”
I like the other picture better, but I’m sharing this one too, largely because she looks like such a little StinkerBell here. “Teehee.”
Dressed for the occasion!
It’s a small baby after all!
Only in SoCal would this be the front-and-center display in the middle of January.
BabyBug and Grandma Marilyn having a Very Serious Conversation.
Do I have the cutest grandparents, or what?
That was an exhausting lunch! It’s hard being so loved.
Cartwheel? High kick?
Trying to roll onto our side
January 18! Mama’s birthday!
“If I can just… get… this… into… my… mouth…!”
We hadn’t even started our day and she was already knocked out!
“You’re going to make me wear this in public?”
“OH GOD. NOT IN PUBLIC.”
If BabyBug has to wear Tender Grips, we shall make them cute!
“Mamas. There’s cute, and then there’s cuuuuuuuuuuuute. I think this might be too much cute.”
On the Mark Twain Riverboat
Waiting for Small World
“ARE YOU SERIOUS?”
“IS THIS FOR REAL?”
“BEST MOMMY EVER!”
An enthusiastic disco thumbs up.
Later that day… WeepyBug was tired!
PoutyPie. Bordering on Ponyface.
Glowy dots! Magical glowy dots!
Dinner at Flo’s!
“Mama, can I please have your face?”
“Mama, for your belated birthday present I shall look like you. You’re welcome!”
“Fingers are nummylicious.”
Just ’cause she’s cute.
Small World, take II
I think Leah’s favorite part of Disneyland might just be her feet.
She slept through the whole ride, and then woke up just as we re-entered daylight: “Mama, I just had the weirdest dream!
LeahBug! There’s no crying allowed at Disneyland! It’s like, in the rules or something! Looks like someone didn’t get the memo.
Mommy and Bug at the castle
The whole family at the castle
“Look. At. This. Hat. MAMAS.”
Silly baby got her foot!
“I swear I can fit this in my mouth!
“Mommy, please don’t throw me in the well! I’ll wear the hat, I promise!”
Baby loves to fly.
“Mommy, can I please have your face?”
“Tada! You like my shirt?”
Hi, Auntie Beth!
Auntie Beth and Uncle Brian
We love our Cool Auntie Erin
Disney: 1. Baby: 0.