Whew! How did I manage to go so long without blogging? Here is what has been going on in LeahLand:
-Leah had a dilation last week and made a little friend in the hospital. A little girl (maybe 6 or 7?) had been staring at LeahBug in the waiting room, and she was called in a while before we were. When we went in, we could hear her crying that she wanted to leave and go home. I wanted to bring Leah down to her little “cubicle” to say hello, but I didn’t want to bother them. Gran, being more gregarious than Mama Lisa, brought LeahBug down and introduced her. The little girl perked right up, and asked about the baby, and we didn’t her her cry again after that. We waved at her and she waved back as they rolled her off for surgery, and we saw her being wheeled out afterward to go home and her mom said she had asked how the little baby was doing. 🙂 Very glad our sweet Bug was able to bring a little sunshine to another little girl’s otherwise yucky day.
-We celebrated our first World Down Syndrome Day as mommies with our friends Jess, Toni and Wesley. Wesley is 20 years old and has Down Syndrome, and he just graduated from a cool program at UCLA for students with developmental disabilities. What a great model for our little BabyBruin! Mama Jess made a beautiful Shabbat dinner and Wesley held Leah for the first time! Pics below.
-Leah will not be having a Nissen fundoplication next week after all. They will be repairing her diaphragmatic hernia and putting her little colon back where it belongs. I do think that is causing her some discomfort, and it seems to be affecting her little poops too – usually she has one every day but lately it’s been every few days. Regarding the fundoplication, there is some speculation that the reflux may not be the primary cause of the stubborn stricture, and a Nissen is a huge step to take if there’s a pretty good chance it won’t work. Instead, they will continue with the dilations for a few more months, and if they don’t work then we may be looking at a surgical fix; it’s possible that the scar tissue is just too severe to be repaired. That is the main reason they aren’t doing the Nissen – if Leah needs another surgery to deal with the stricture, they need to preserve as much of the esophagus as possible, and a Nissen would create more scar tissue and damage to the area and would give them less native esophagus to work with. So they will hold off on that procedure for now.
-Leah had an echocardiogram and the cardiologist still feels confident that Leah does not need heart surgery right now. Again, the jury is still out on whether she will need it later down the line (like, in a couple of years) – she does have the increased blood flow to the lungs, and the VSD has not improved. But he doesn’t feel that immediate intervention is indicated.
-LeahBug had her very first play date with a couple of other babies who live within our general area and also have Down Syndrome! They have to be the region’s three cutest babies. I’m pretty sure of it. Pics below.
So, that’s what’s what! Let’s break out the pictures!
Ladybug Toes! It’s so much easier to polish toenails when the baby is asleep!
Going on a trip!
We took Leah to the pier to see her first sunset for her 10-month birthday. This is her looking very excited to see the ocean for the first time.
The beach is so pretty!
Mama and Mommy love a nice ocean sunset!
Mommy and Buggy and sunset (oh my)
Leah woke up in time to see all the pretty colors
Mama and Bug
The Monkey Queen
Working hard in PT
Play date with BFF once-removed, Ry Ry (see how big he’s gotten????). He’s giving Leah some sort of turtle sticker.
Staring at the Team LeahBug ladybug on Ry Ry’s t-shirt. She loves that ladybug.
Ry Ry’s sweet face!
Ry Ry teaches LeahBug how to play after bath time.
Just because. Can’t handle the cute.
Baby staring wistfully at Gran’s soup. She’s started making wishful noms when she sees us eating. See below, for example:
The eagle has landed! We have a thumb in the mouth!
Poor cheekies! Heal, cheekies, heal! We tried the hat, but we wound up having to use tape anyway, so we’re back to the Tender Grips. We’re trying to keep them a little higher up on her cheeks.
Dilation day! Sweet Buggy having a nap with Mr. Glow Worm.
I told her to smile for Aunti Staci.
Ladybug toes under the bright hospital lights.
Our little acrobat – she was half-drugged and still trying to grab that red foot.
Well, here we are again! They kept Leah overnight for observation because of her breathing, and wound up discovering by accident that she has a diaphragmatic hernia. Good times.
Mr. Monkey knows this hospital well!
We got out of the hospital on March 14. It was Pi Day. After a long and difficult day of waiting with a hungry baby, we felt we deserved to celebrate Pi Day with pie. Well. Really, it was Leah who deserved pie. Someday we’ll be able to give her pie!
Home sweet home for this silly bug!
We were so cheerful the next morning!
Can you handle the cute?
Mama Baby Selfies!
Raspberry in progress! Grab the umbrella!
Fingers for breakfast!
Later that day… we went to meet with Sue of Binkeez For Comfort, who sent Leah the sweet polka-dotted blanket you always see with Leah when she goes to the hospital. Recently they made a special lovebug Binkeez in honor of Leah (pictured above), and we will be delivering some to the children in the PICU just as soon as the blankets arrive. Sue delivered Leah’s special Binkeez by hand as she was already in Los Angeles to visit Children’s Hospital LA for another special delivery. Leah loves to stare at the cute bugs on this special blanket! Thank you, Binkeez! Sue took this sweet picture when we met her at the hospital. Then we had a nice visit – we went to get frozen yogurt, and then we drove Sue back to her hotel via the “scenic route” (i.e. Hollyweird Blvd!). Such a fun day!
Posing with Sue – but mostly trying to grab her hair. And maybe her glasses too. <3
We went to an event for Mandy’s work and there were lots of people there. You do what you gotta do, right?
I know there are millions of pictures of this kid asleep in her car seat, but isn’t she just so sweet? I can’t help it.
The next day, Leah celebrated her very first Purim! It is customary for children to dress up as the characters in the story, so Leah dressed up as Queen Esther. Cabbage Patch Queen Esther.
She was in a much better mood than she was the last time she wore this dress… it fits her a heck of a lot better, too!
Serious Queen Esther
Grandpa Bill came over to visit and to bring us hamentashn from the best Jewish bakery in the Valley, because he is SO COOL like that. We decided to surprise him with little Queen Esther.
“HOP! MAYNE HAMENTASHN!”
Grandpa Bill saved BabyBug from the sillyprecious hat, but Mama insisted on one last picture with the sillypretty flower. I can just see the “SIGH. MOM.” on her face.
“Mama says I can’t put my hands in Grandpa Bill’s beard anymore? Fine then! I’ll just pull it with my toes!”
Gran and BabyBug stirring up trouble in the cafeteria!
“Gran, I have a foot!”
Silly time at speech therapy
“What is it?” Leah’s speech therapist suggested that we try a sippy cup for tiny tastes since she doesn’t seem to do that well with the bottle.
“Huh. Okay. I can try that.”
“Uh…” It was a little bit too much for her, but it was fun while it lasted!
Big appointment day!
“Oh, don’t stick out my tongue? Don’t stick it out like this?”
Leah was pretty tired when she got home from the hospital after a long day of appointments. She just wanted to relax on the couch…
Mommy has been giving LeahBug tiny non-nutritive tastes. She even let her lick an orange slice.
“OH, I LIKE THAT! MORE PLEASE!”
Little Purple Riding Hood
“Look, Mama, I’m a baby! I need some therapy!” (At which point Mama immediately broke out the disinfectant.)
“Well, this is new! Thanks for the cool chair, Gran!”
FaceTime with 94-year-old Great-Grandpa and Aunti Staci! Ain’t technology grand?
We play hard and then we sleep hard.
And here we are again! Another dilation day.
Eating our Binkeez for breakfast.
Our first World Down Syndrome Day! Break out the funky socks! Not quite sure how that started, but we’ll play along!
Mama feet and Babyfeets
We celebrated our first World Down Syndrome Day with Jess, Toni and Wesley! Leah and Wesley had lots to talk about.
Jess and LeahBug!
Jess and LeahBug and Mommy!
Nakie Baby getting ready for bed!
“Five more minutes!”
Leah had enough dresses for one week – time for some overalls!
Fingers are the best breakfast.
“Well hello there, strange and interesting creature!”
Our first play date with a baby around our own age (well, a couple of months younger)! And she also happens to have Down Syndrome! Neato, huh?
“Listen, kid, I’m old and experienced, so let me tell you how the world works…”
“But before I tell you how the world works… could you please tell me how you sit up so well?”
Tiny feet x 2!
“Fingers, fingers are delicious. You understand?”
Baby A showed LeahBug how the whole head-holding-up thing is done.
Along came Baby D! It’s a baby party!
“There’s another baby? There are three babies in the world? I’m learning all sorts of new things today!”
Baby party: Birdseye view
Leah was the first to fall asleep, but the kids were nice at this party and nobody played any tricks on her.
Later, we went for a play date with Great-Grandpa!
We love Aunti Staci, even though she has a funky scorpion painted on her arm. What’s up with that, Aunti Staci?
LeahBug finally got to meet our dear family friend Andi. Happy birthday, Andi!
Aunti Staci’s brilliant idea! Dress-up!
Somehow this makes me think of vaudeville.
Sweet face with antennae.
The world’s tiniest cat burglar?
We LOVE dress-up! Sometimes.
Baby Bug and Baby Sister (Mama’s)
Sleepin’ on Grandpa Bill.
Snuggling with Great-Great-Auntie Joan for the first time!
“I love Great-Great-Auntie Joan!”
“GGAJ, tell me a story!”
I couldn’t resist. This is our roommate’s doing. We asked her if she’d mind putting away a ball of yarn that Mandy left out so we wouldn’t find him knitted into it. She told us we were too late.