As promised, the long-awaited PhotoBlast

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Don’t know whether to call this one “The Thinker” or “The Stinker.”

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Fingers are delicious. FYI.

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“You’re not going to make me work, are you?”

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“Oh hey – this isn’t so bad!” (despite that little sour face, she did actually enjoy the sweet potatoes)

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“Look Mama! I have a foot!”

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“Why are we dressing up? Are we going somewhere pretty?”

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“Can I eat my dress for dinner?”

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Have you ever seen such a cute ladybug?

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It’s been too long since the last toesies post.

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Sweet face

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Another dress-up day? I think I’d like to sleep in a bit.

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“Oh hi, Mr. Great-Grandpa Man!”

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“I have a dress! I bet it tastes delicious!”

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“Grandpa Mannie, how old are you?” He is 94 years old.

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“Whoa. 94! That’s a lot of birthday cakes.”

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It’s a Grandpa Bill! Giving kisses!

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“Oh hey! There’s a Grandpa Bill attached to that face-toy!”

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Quadruplets.

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FaceTime with Ry Ry!

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“I need more toys, please.”

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Back at Disneyland to use up the last day on the park hoppers from cousins BB&E!

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First, Leah met Daisy Duck.

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Then, we met Winnie the Pooh!

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Leah introduced Gran to her new friend.

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Gran and BabyBug were up to no good.

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We met Eeyore, too. He was a grump.

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Leah loves Tigger. LOVES HIM. He is orange and black in high contrast – what’s not to love? I wish the cast member had taken a picture of her staring at him.

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The sweetest mouse in town.

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Oh hey! The mouse is eating the cat! I told you she loves Tigger!

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No caption needed.

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We rode in a teacup. Or like… we sat in a stationary teacup. Close enough.

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Later on, Leah reunited with her old friend, Minnie Mouse.

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Gran wanted to meet Minnie too!

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Leah was supposed to introduce us all to Mickey, but she was too busy staring at him. “I feel we have something in common right now, but I can’t quite put my finger on it.”

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In case you were wondering…

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A few days later, Leah went to her very first rock concert. Her Cool Auntie Erin is in a band!

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“Yeah. That’s right. I’m with the band.”

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She’s a real partier, this one.

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Cool Auntie Erin and her bandmates

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Leah’s new CuddleBug lovie, made especially for her by Cymmie’s Cuddle Bugs. One of Leah’s Facebook friends was sweet enough to cover the costs for Leah to get a matching CuddleBug blanket, pillow and lovie, who we have named Mr. LionBug. Leah already loves this little guy. They had a Deep Conversation as soon as they met. She babbled at him and he jingled back at her.

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Deep in conversation.

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A kiss for Mr. LionBug. Possibly a nibble.

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“He just said something really witty!”

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Yup. She loves him.

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Aunti Staci is helping us practice sitting up!

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“Fingers are yummy. You like my stickers?”

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Stole Mommy’s spot. Feels no remorse.

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Morning selfies!

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Somebody got to ride the swing for the first time in occupational therapy!

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Leah had so much fun! She kept closing her eyes, and at first we thought maybe she was getting sleepy (because they were just a little droopy), but then she really started squinting and we realized it was because she isn’t used to having wind in her face! “WHO IS BLOWING ON ME?????”

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Time for our morning endoscopy and dilation! Nomming on Mommy’s chin in the waiting room.

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“We’re up awfully early, aren’t we?”

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Baby Burrito waiting for the doctor to come get her.

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She was hungry. Very, very hungry.

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Helpful Baby is helpful.

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Angry and hungry. There’s just one solution.

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“GIVE ME MY LUNCH! THIS INSTANT!”

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“Mmmmm. Noms in my tummy. That’s better.”

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On the ride home: “Man, I had the craziest dream just now.”

Later that day, we practiced our sitting!

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BABY CHEEEEEKS!

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BABY SMILES!

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“Just gimme your damned finger!”

A little shuffle

I guess when it comes to scheduling, nothing is set in stone.

Leah’s sleep study, which was scheduled for April 6, is happening right this moment. They called this afternoon to let us know they had a last-minute cancellation. Leah is one disgruntled little baby right about now. Unfortunately they only had room for one parent, so Mandy took Leah up to the hospital and I am at home missing my favorite ladies. But it’s okay – I had a friend over earlier this evening and we watched highlights from the Kitten Bowl (which I have already seen in its entirety, but that is SO not the point). So all is good.

In addition, Leah’s next dilation (which was supposed to happen in two weeks) is now set for this coming Thursday due to scheduling conflicts with the doctors. I spoke with the NP this morning and it sounds like Leah’s stricture was very tight – like, about 2mm. That’s tiny. So it’s a good thing they are dilating now. If it had closed entirely, it would be a much more difficult fix.

BabyBug’s Very Long Day

I hate to do this to you, but it’s gonna be another photo-less post. I am working on another photoblast, but in the mean time, I thought you might like to know how Leah’s day went.

To refresh your memory… Leah’s swallow study indicated that she had a stricture, or a narrowing of the esophagus at the surgical site, which was preventing food from passing safely from the esophagus into the stomach. They resolve this issue by inserting a balloon via endoscopy to stretch out the surgical site and allow food to pass through.

For a couple of hours earlier this week, it looked like Leah’s procedure this morning might be postponed for a bit, but her doctors sorted out the confusion and she arrived at the hospital at 6:15AM this morning. YES. 6:15. AM. The plan was that she would be admitted following her procedure so that they could monitor her overnight, since she’s had difficulty with extubation the past few times she’s been on the ventilator.

The procedure started a little over an hour late, so we spent a good portion of the morning trying to distract Leah from the fact that she’d had food withheld since 2AM. When we spoke with the doctor he told us that he would keep her overnight for observation if they had to dilate, but that if there was no need for dilation then she would likely go home after the procedure unless there were any problems.

The procedure took maybe 45 minutes total, give or take a few. By the time Leah came back to the recovery room, there was a whole new set of plans. Leah was not kept overnight, but she does have a stricture, and a dilation was necessary. But that’s not all. Leah is now scheduled for a dilation every two weeks for the time being, until they are able to get the constricted portion of the esophagus to the desired size. They were able to dilate to 6-7mm today. They want to get to 12mm. We are still in the learning process for this new complication, so I’m not sure what that means relative to a “normal” esophagus or how long they anticipate it will take to get her to a comfortable place. I’ll let you know when I know!

After the procedure, LeahBug was Pretty Freaking Cranky until she had her lunch. She has this special way of crying and babbling angrily at the same time that makes you feel like you can actually hear profanities as she yells. That’s the yell we got when she woke up and realized her tummy was on Empty. Whew. All things considered, though, she was actually pretty pleasant. Once she had some food in her, she calmed down and even took a few catnaps. Our big strong girl barely cried when they took out the IV (although I’ll admit that feat took a lot of Glowworm songs and Mama-dancing), and by the time we actually left the discharge area she was smiling and giggling. Sweet girl.

SO. That was our very long day. We are all exhausted, and I’m not quite sure how we’re still awake at 10PM (so I apologize for any incoherence – I’m operating on very, very little sleep!!!). I will post photos soon!

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Okay, I lied. One picture. Because it makes me laugh.

BabyBug visits the Mousiest Place on Earth!

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.

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“Oh look, a foot!”

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Silly girl has her leg!

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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!

January 16

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“Rumor has it we’re going to Disneyland. Allow me to share my feelings.”

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Let’s look at that up close

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And a little closer…

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BabyPie checking out our bed

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“I’m comfy, Mama. You take the crib tonight!”

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I like the other picture better, but I’m sharing this one too, largely because she looks like such a little StinkerBell here. “Teehee.”

January 17

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Dressed for the occasion!

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It’s a small baby after all!

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Only in SoCal would this be the front-and-center display in the middle of January.

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Grandpa Bob

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BabyBug and Grandma Marilyn having a Very Serious Conversation.

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Do I have the cutest grandparents, or what?

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That was an exhausting lunch! It’s hard being so loved.

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Cartwheel? High kick?

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Trying to roll onto our side

January 18! Mama’s birthday!

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“If I can just… get… this… into… my… mouth…!”

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We hadn’t even started our day and she was already knocked out!

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“You’re going to make me wear this in public?”

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“OH GOD. NOT IN PUBLIC.”

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If BabyBug has to wear Tender Grips, we shall make them cute!

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“Mamas. There’s cute, and then there’s cuuuuuuuuuuuute. I think this might be too much cute.”

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On the Mark Twain Riverboat

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SMOOCH

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Cheeeeese!

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Waiting for Small World

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“ARE YOU SERIOUS?”

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“IS THIS FOR REAL?”

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“BEST MOMMY EVER!”

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An enthusiastic disco thumbs up.

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Later that day… WeepyBug was tired!

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PoutyPie. Bordering on Ponyface.

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Glowy dots! Magical glowy dots!

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Dinner at Flo’s!

January 19

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“Mama, can I please have your face?”

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“Mama, for your belated birthday present I shall look like you. You’re welcome!”

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“Fingers are nummylicious.”

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Just ’cause she’s cute.

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Shnuggling

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Tummy time!

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Minnie!

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Small World, take II

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I think Leah’s favorite part of Disneyland might just be her feet.

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She slept through the whole ride, and then woke up just as we re-entered daylight: “Mama, I just had the weirdest dream!

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LeahBug! There’s no crying allowed at Disneyland! It’s like, in the rules or something! Looks like someone didn’t get the memo.

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Mommy and Bug at the castle

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The whole family at the castle

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“Look. At. This. Hat. MAMAS.”

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SILLY baby!

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Silly baby got her foot!

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Goofy!

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“I swear I can fit this in my mouth!

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“Mommy, please don’t throw me in the well! I’ll wear the hat, I promise!”

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Baby loves to fly.

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Loves. It.

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“Mommy, can I please have your face?”

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“Tada! You like my shirt?”

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Hi, Auntie Beth!

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Auntie Beth and Uncle Brian

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We love our Cool Auntie Erin

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Disney: 1. Baby: 0.

January 20

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Sweetheart

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Serious Bug

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Just kidding!

Rant ahead:

Continue reading

A long-overdue update.

Well! I’ve had at least 5 people tell me pointedly that I haven’t updated the blog in a while, so I guess it’s time.

What’s new in the BabyBug household?

Well, Leah is officially 8 months old as of yesterday, January 8. (Here’s the video we posted on Facebook for her birthmonthday.) She is spending more and more time looking at her feet when she’s in her chair, and we’re sure she’s going to try to catch them any day now. We are working with her every day on tummy time and sitting up / neck support, and she is getting better and better at it, although she is still a bit bobble-headed and I think she’s a long way off from being able to sit up on her own. Her big accomplishment in recent weeks is that she can support her neck when we pull her from being on her back to sitting up. She couldn’t do that in the hospital! Good girl!

Leah’s Regional Center intake worker let us know that Leah will be getting three appointments per week for the time being – one OT feeding, one PT, and one infant stim. I’m a bit concerned because they sent us a copy of the OT assessment after that decision was made, and it’s not made entirely clear in the assessment that Leah doesn’t know how to eat at all – in fact, the reason given for the g-tube placement is difficulty in coordinating sucking, swallowing and breathing. Yes, that’s her problem now, because of the Down Syndrome and lack of experience in eating – but the g-tube was placed because she was born without a functional digestive tract!

In my previous job I was just starting to learn about special ed, having previously focused on another topic area. I have the feeling that I’m going to learn a lot more by being on the parental side of things. Lesson # 1 learned: Get a copy of the assessment before the eligibility meeting takes place.

Other things going on since the last blog… BabyPie has finally graduated to a high-chair, so she can sit AT the dinner table with us instead of sitting next to the table in a bouncy chair and looking up at us going, “HELLO! LOOK AWAY FROM THE PLATE!” The pictures make her look really big, but she is so very tiny in this thing that she can’t even reach the toys we put on it. She is itty bitty.

We had lots of visitors this past week (all pre-screened for coughing and sneezing and sniffles, of course!). Our friends Jess and Toni and their 19-year-old son Wesley (also chromosomally enhanced) came over for dinner last week. My family came over this past weekend so that we could celebrate my mom’s birthday. My sister brought my 94-year-old grandpa, who loves this little bug so much. She makes him smile. Later in the week, cousin Jenna went in for surgery, and Dr. BabyBug made a couple of virtual house calls. Cousin Jenna finally got out of the hospital today and of course she came over for some Bug Therapy. Our friends also came over this morning, and one of them played with Leah and gave us some ideas for exercises we can do with her. Always appreciated! The other friend served as nap-time comfort. On Saturday, Aunti Staci is coming over!

Leah has started her speech therapy. She’s still having a ton of trouble with the whole notion of pulling water/milk into her mouth and then swallowing it. She’s like, “OH MY GOSH, I WANT TO EAT, I JUST WANT TO EAT, NOM NOM NOM – wait, what is this STUFF in my mouth????” She wants to nurse, she wants to suck, she knows it’s something she’s supposed to be doing – but then she gets totally confused when it happens.

In case you’re wondering, the cloth diapering is still going well. It’s not quite as terrifying as I initially thought it might be, although it can be pretty messy when there are messes. But that is true of disposables as well. And I did the math – it’s definitely a money saver, despite the initial investment. This is especially true because kids with Down Syndrome often have potty training delays, which means Leah may be in diapers longer than a typical child would – and that delay shouldn’t result in extra diapering expenses as it would if we were using disposables. Plus… the landfills are filling up quickly enough already! We’ve had so little control over things and it’s nice to be able to make this decision and stick with it.

In other news, we’ve decided that Leah isn’t going to ask for a pony. She’s going to say, “Mommies, I need a pony as a reasonable accommodation under the Americans with Disabilities Act” – because she’s my daughter. And then she’s going to make the Pony Face.

So. I offer you this video to make up for the delay in updating.

And now, pictures!

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BabyBug visiting with her friend Jess!

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“Um, I’m not so sure about this high-chair thing, Mamas…”

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“But this means I’m a big girl now, right?”

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I love this face. It’s her “looking up” face. She looks like she’s thinking hard – perhaps contemplating the meaning of things above her head.

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One determined baby!

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“Um, ‘scuse me, Mr. Grandpa Bill? You still have that toy on your chin. Share?”

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Spinning BabyBug???

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Sitting on our new exercise ball.

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“LOOK AT ME! I’M SO PROUD OF ME!”

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“This is HARD WORK.”

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Three generations (one’s skipped because my mom’s not in the picture!). My grandpa, me, and oh yes, my little Buggy showing off her belly.

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There are 94 years separating these two. But they both look like they could cause some trouble, don’t they?

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He loves this tiny tot!

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Dr. BabyBug makes a house call.

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We celebrated our 8-month birthday with smoochies from Mommy!

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Then we did big-girl things like sitting up…

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…and sticking our tongue out.

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It was a very exhausting day. But we’re a big girl now, so we’re all proper with our pinky sticking out.

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Good morning, Mr. Cheshire Cat!

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“Mommy, it’s looking at me!”

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“Oh well. I think I’ll – zzzzzzzzzzzzzz.”

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Waking up for the second time today. Good morning again! Monkeys are delicious.

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“Like, omigawsh. I’m in a high chair.”

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Waiting for our friends to arrive and trying to decide which toy to yell at first.

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“First I shall yell at the wheel. AYE!”

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“Mama! I yelled at it! Why didn’t it spin?”

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“Make it spin, Mama! Make it spin!”

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“Make it spin because I’m CUTE.”

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“Mama. Make it spin. And pony.”

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See how freaking tiny she is in this high chair. We had to add the little infant head pillow from her bouncy chair just to make sure she doesn’t flop around.

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“Spinning! Good Mama. See, was that so hard?”

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Buggy chillin on her pal.

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Cousin Jenna gets Bug Therapy.

Periwinkle time!

Apparently January is Esophageal Atresia Awareness Month, and periwinkle is the color for EA awareness, so welcome to our new background color for the month of January!

In other news, Leah and I spent a good 15 minutes last night marching around the living room singing classic TV theme songs. BabyBug would start to giggle a little bit every time I changed to a new song – I’m impressed! Note for future reference: Leah LOVES the theme songs to “The Munsters” and “Mr. Ed” but is not as impressed with “The Mary Tyler Moore Show.” Probably because MTM doesn’t come with exciting sound effects and voice changes.

LeahBug in the new year!

I guess it’s high time for another slew of photographs. But first, a tiny update on the tiny Bug. Leah had her first outpatient visit with her cardiologist last Friday, and really, not much has changed. We’re still in a long-term “wait and see” holding pattern. The ASD is pretty small at this point, and even if it needed to be corrected, apparently there are less-invasive ways of repairing it. The VSD, however, needs to shrink for Leah to not need surgery; the doc said the size of the hole is right on the borderline of whether it would or would not need surgery, but the bottom line is it needs to shrink. If she does need heart surgery we are likely still looking several years down the line. So let’s wait and let’s see and let’s hope this thing shrinks!!!

In other news, Leah is coughing an awful lot lately and is pretty sneezy too. We are keeping fingers crossed that it’s just allergies and not a cold, but it’s been pretty bad today. Not really quite sure what to do if it keeps up – but we’ll call her doctor in the morning and find out.

We hope everybody had an awesome and safe New Year’s Eve celebration, and we wish you a happy and healthy 2014! Here’s looking forward to a year of growth and progress for our bitty Bug, who has come so far already but has such a long journey ahead. Thank you for being Leah’s cheerleaders. <3

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“Silly Mommy, silly Mommy!”

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“I love my Binkeez!”

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Sweet face

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Pony face

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Melt-yer-freakin’-heart face

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If babies could take selfies…

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Hanging out with honorary grandma Cathy

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Somebody isn’t waiting up ’til midnight!

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Out cold like a polar bear!

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“Mama, what’s a New Year?”

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“Auntie Kim and family did what to celebrate this New Year’s Eve thing???”

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“No Times Square for me, thanks! I’m happy with my tasty monkey!”

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“This is my serious face.”

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“Good morning, feets!”

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“Look Mama! Two feets!”

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Smooooooshy face

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Meeting our buddy Ry Ry for the first time!

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“What is it?”

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A visit from cousin Jenna. These two are gonna be trouble! Right here in River City!

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“Peekaboo, Mommy!”

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“Teehee! I’m cute. Shhh, don’t tell anyone.”

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“Mamaaaa…. put the camera away.”

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“Like, omigawwwwd, gag me with a spewn.”

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I love this little shirt from one of Mommy’s colleagues!

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“WHEW! Neck support is hard work!”

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Showing off our dinosaurs.

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Cousin time!

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Out cold on Maddy’s lap!

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Chillin’ with Abby. In the background, Ms. Jenna says, “Are you done yet? Is it my turn yet?”

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Reunited at last!

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Somebody intercepted the baby between kid cousins! BabyThief!

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See? Trouble.

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Precious in purple

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Besties

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Seriously, I could stare at this face for hours.

Big Week O’ Docs Debriefing

(Random note: Today is Leah’s 227th day. This has no real significance except that today she is a TV sitcom.)

WHEW! This week is finally over! BabyBug had a total of 9 appointments. Here is the rundown on how they went, partially for you and partially for my own reference:

Monday: Speech: Turned into an emergency visit to the nurse practitioner when BabyBug’s g-tube balloon failed. “Glug glug glug.” Leah is not quite ready for a swallow study yet. She needs more OT to work on sucking coordination.

Tuesday: Surgery: Baby is cleared for feeding as far as surgery is concerned. Their main focus is on feeding from a structural viewpoint – maintaining the g-tube, watching for strictures. GI: Leah’s feeds are now bolus (over an hour) during the day and continuous at night. Her g-tube site already looks a little better.

Wednesday: RSV shot. DID SOMEBODY SAY SHOT? Leah was pissed, but she was strong and brave, although she had a few choice syllables for the nurse. The lady in charge of the RSV shots gave me some awesome signs to hang on the stroller so that people don’t randomly reach out and try to touch the baby without asking. Seriously – this is not only people we know. Total strangers will sometimes reach out to touch the baby or the stroller. Why do they do that? Why?

Thursday: The big day turned into a day with a big gap. The morning appointment with the ENT was simply lovely. Buggy got some yuckies sucked out of her nose, and then a big scope (not that big really, but to her it probably looked like a hose) stuck up her nose and into her throat so the doc could see her vocal cords and other nifty throat parts. Leah’s vocal cords are still a bit red, but they are moving more appropriately than they were last time, and her larynx no longer appears to be very floppy. The ENT says for the time being we can come back and see her as needed but no follow-up is necessary. YAY! The OT appointment got cancelled at the last minute (not sure why) so we wound up with a 3.5-hour gap between appointments. So Gran and Mama and BabyBug went to Starbucks. Oh yeah. Baby had her first Starbucks trip and it was grand. Or maybe grande. Leah was very well-behaved, and even got in a little bit of a nap. We did have one, um, “incident” in which Mama Lisa adjusted the nasal cannula so that the tips pointed in the right direction (into her nose), and BabyBug responded by casually putting her hand up to her nose – and ripping the cannula right off her face. She thought this was absolutely hilarious. I got big smiles. She was very, very proud of herself. After Starbucks Leah had her pulmonology appointment. BTW, Leah weighs about 11 lbs, 4.5 oz. Could be better, could be worse. She pulled off her cannula AGAIN at the office, so we just left it off while we waited to see the doc. He approved our request to have her only be on oxygen while she is sleeping, although we really need to get a pulse oximeter so we can keep an eye on her saturation levels. She is due to have a sleep study within the next few months, but he said that based on what he has observed, he thinks it will likely come out abnormal. So we’ll likely be dealing with that in the coming months.

Friday: Regional Center assessments! The OT came in the AM and did her assessment, and it sounds like she plans to recommend PT, OT, and an OT feeding assessment. Leah’s chronological age is about 7.5 months, but her adjusted age is 5.5 months since she was born 2 months early. However, with the Down Syndrome and also such a long hospitalization, the expectation is that Leah would be behind in development. The OT went over some of her findings with us and it sounds like Leah’s age developmentally is about 3 months right now in most areas. She was at 20 days for reactions to sounds – she hears them but doesn’t turn to investigate. I think this was referred to as receptive language. And guess which area was right on target for her adjusted age of 5 months? Expression! I believe (could be wrong) that the specific term was expressive language. Basically, in terms of expressing herself, she’s doing pretty well. But I think we all knew that, right?

Picture time!

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The hamsa is up! Once Leah is in her own room it will go in there for her, but for now it is in the living room for everyone to enjoy! Thanks again, Angel Love Boxes!

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“HI GRAN!”

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Asleep with our buddies

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“Did somebody say SHOTS???”

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Baby’s first rainbow

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“Look Mamas, no cannula! Mr. Doctor Man says I only have to wear it when I sleep!”

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Adorable precious jacket from JK Jackets for Kids. Thank you!

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So pretty with her glowing olive-oiled cheekies. Her Facebook pals suggested that olive oil was a good way to get tape residue to come off. It worked!

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Snuggle snuggle snuggle!

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The RSV clinic supervisor gave me a couple of these to hang on Leah’s stroller and carseat. Genius!

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Asleep with Mr. Seahorse

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“Really, Mama?” Tonight we had our annual holiday get-together with cousins Beth, Brian and Erin and some additional family/friends, in place of the Christmas Eve we usually spend with them. BabyBug got all dolled up in a dress that was a gift from Beth and Cool Auntie Erin. Leah had lots of fun, but I think she’d have been happier wearing a onesie. It’s not so much that she doesn’t enjoy dresses in particular – it’s that she doesn’t like anything that is bulky or particularly complicated to put on, e.g. jeans, ruffly dresses, overalls, t-shirts – really anything aside from front-snapping onesies that don’t require anything to go over the head. On the other hand, she does seem to reserve some of her very best angry faces for the frilliest outfits…

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I think they were thinking the same thing: “Toy?”

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Cousin Mocha (I call her Moo-cat because she is fat) investigates the new visitor. “Hmm. Friend? Enemy? Snack? Toy? Never mind. It’s boring.”

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‘Cause it isn’t a dress photoshoot without an angry babyface.

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More snugglies

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This could almost pass as a smile, but I’m fairly certain it was not.

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But this is definitely a POUT.

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Distracted Buggy is distracted. Her hand is so dainty.

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“Whaddya want now?”

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“That’s more like it.”

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Selfies!

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BuggyBug asleep on my arm.

Metha-don’t

Today was Leah’s last dose of methadone. She is NOT PLEASED. To be continued…

We have been experimenting with cloth diapers, which I think is also slightly displeasing to the little one since she’s used to Pampers. It’s been an adventure but Leah is being pretty tolerant as babies go. So far we’ve tried Thirsties Duo All-In-Ones (both with and without extra inserts), Thirsties Duo Snap and Thirsties Duo Wrap, as well as Blueberry Coveralls. We’ve had some leaks and some successes – but overall we feel it’s a good step to take, and will save us money (and landfill space) in the long run, especially if we can transition to cloth wipes too. I used to joke about this when Leah was in the NICU and PICU – “Hey, but think of all the money we’re saving on diapers.” Ha. I think if we can hold out over the next couple of weeks, we might actually start to streamline the process and have it not be such an ordeal. We’re open to suggestions. Leah takes Lasix twice a day, which means her wet diapers are pretty heavy. So far, I prefer the all-in-ones (if we can just get them not to leak) whereas Mandy likes to go old-school and do the plain cloth diaper (with Snappies instead of safety pins) with the waterproof cover. It was a pretty funny scene in our room this morning, what with Mandy’s mom trying to teach her how to fold and pin the cloth diaper. What did people do before all these newfangled diapering doodads?

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Houston, we have a problem and his name is Jeepers “All ur furniturez iz mine” Creepers.

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I think we might be close to the discovery of babyfeetses.

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“I love these Tender Grips way more than cellophane tape!!! No more owies!”

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Yesterday was a day of sleeping on loved ones. Here’s BabyBug knocked out on Uncle Ralph.

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A little nap together.

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Just kidding! He was only pretending! Silly Uncle Ralph!

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Knocked out on Gran a little earlier in the day.

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Knocked out on cousin Kim.

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From cousin Kim’s viewpoint

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We woke up for cousin Natalie’s lap!

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Reading a book from Auntie Joan. Thanks Auntie Joan!

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Greeting the lamby from Uncle Ricky and Auntie Heather. Thanks guys!

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Our new Tubie Friend, who has his very own g-tube and nasal cannula! Thank you, Tubie Friends!

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“Mama? I think this giraffe is on acid. I don’t think they’re supposed to be hot pink with flowers on their feet.”

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We’re still working on keeping that paci in our mouth. Leah has a major tongue thrust, so as soon as we let go of the paci, it pops out. She lacks the coordination to keep it in by holding it or by continued sucking. The stuffed animal seems to help a little bit – the paci is attached to the animal, so Leah has a little bit more to hold on to.

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“Wheee! Look at me, getting into trouble with my g-tube!”

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Magical Mommyshoulder

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“What is this monkeypants monkey business?”

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“Halp.”

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“Never mind. I’m good.”

Feels like home

Goodness! We’ve now been home almost 36 hours. It feels like days and it feels like 5 minutes. I think “settled in” would be a massive overstatement, but let’s just say that we’re in. It is not unlike actually moving into our home for the first time, since we’ve been gone for 7 months and we’re coming back with a new normal. Unpacking has been exhausting but we made a little list and broke down the tasks into manageable pieces that can be done one day at a time. We will be back at Ronald McDonald House for a few days next week, because Leah has 7 appointments over the course of 4 days, so I’ll continue to do a little bit of unpacking every day while Mandy’s at work so that when we come home from RMH next time we’re actually coming home to home and not to a mess of boxes and suitcases. It is pretty chaotic.

Leah seems to be adjusting well. She’s a tiny bit sneezy and snorty, especially at night. I’m guessing this is because the house was just cleaned and vacuumed not long ago and there’s probably still dust in the air – and of course there are the cats to consider. Then again, sneezing can also be a symptom of withdrawal, and her dose of methadone just took a huge dive. Keeping fingers crossed that she is not straight-up allergic to the cats. We haven’t seen any red or watery eyes or runny nose so far, and no skin reactions. She has been around cat-owners all summer and hasn’t seemed to have any reaction to their clothing when she was held, so hopefully that bodes well for the kitties. She doesn’t seem to be in any distress in terms of breathing, so we’ll keep an eye on her and if she continues to be sneezy and a little sniffly, we may have to invest in an air purifier to suck up some of the dust and pet dander.

What else has been going on… Today Leah had her first doctor’s appointment since she got home. It didn’t take very long, did it? We just couldn’t stay away, I guess. I’ve been in touch with her doctor and medical equipment company all weekend. Hopefully things will calm down once we get past this transition – the move home and the weaning from methadone. Then again, after that we move into the next transition of eating by mouth. Today’s appointment was for occupational therapy. The OT attempted to give Leah a tiny bit of breast milk by bottle. It was too much for her and she got confused and upset. She wants so badly to nurse and suck, but she lacks the coordination to do it properly. She does a lot of smacking lips together and “nomming” but doesn’t get in many proper sucks. They count them. I think she did maybe three or four in a row today. We want to make sure we start feeding her by mouth while she still wants things in her mouth; I’ve had multiple parents tell me their kids developed horrible oral aversions, making oral feeds far more difficult, if not impossible.

I’m happy to report that we have not yet had a g-tube outage since we got home. I don’t know if it’s because we haven’t been “strolling” her around as much or if it’s because we taped the extension to her belly with paper tape. It’s also only been 36 hours. But we’ll take it!!!

Not too much else going on right now – unpacking, playing with baby, calming baby, soothing baby, trying desperately to get baby to stop crying… I can’t wait until she’s off these meds!!!!!

Oh – one more transition coming up: we’re going to take a stab at cloth diapering. Wish us luck!!!

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We got Leah’s care package from Angel Love Boxes today. ALB is a non-profit organization that sends care packages to kids with chronic illnesses and disabilities. There are still some g-tube covers on the way as well as a tummy belt, which we are really looking forward to because we are hoping it will help keep Leah’s g-tube extension under control. The other thing that we are really looking forward to is that we will be receiving a donated Res-Q wedge some time this week. This is an orthopedic device meant to keep infants elevated at an angle to prevent reflux, and is especially critical in Leah’s case because if she spits up, she doesn’t really know what to do to swallow what remains in her mouth. The Res-Q wedge is better than the store-bought wedges because it’s at a higher angle, comes with a sling to keep the baby in place, and is designed to fit evenly in a standard crib to avoid smothering accidents. It is considered a medical device and we have a prescription for it from Leah’s doctors, but the insurance won’t cover it and it’s a few hundred dollars. Angel Love Boxes contacted the manufacturer and they agreed (under a few reasonable conditions, like collaborating with their OT to make sure we use it correctly for Leah’s diagnosis) to donate the wedge to us along with the current and next size sling (since she’s right on the threshold for the sizes but you have to use the proper size at any given time). We are grateful for the Res-Q Wedge makers’ generosity and kindness, and also *so* appreciative to Angel Love Boxes for working so hard to make sure Leah got the wedge she needs.

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Did you notice the hamsa in the previous picture? Good eye! Being a Christian charity, Angel Love Boxes usually includes a handcrafted wooden cross in each care package; these are made by the org founder’s dad. We are a Jewish family, and while the crosses are beautiful and you can tell that a lot of love goes into making them, it seemed like they should go to families where they would be appreciated fully! So I wrote to the founder and said just that, but noted that we would love to have a hamsa that was made by her dad if he was willing. She asked for an example that she could show him and I sent a Google Image search, and the next thing I knew, she’d emailed me a design from her dad and also posted on the ALB Facebook page about the meaning of hamsas! So cool. This is the result of that whole exchange. It’s lovely and so special, and we can’t wait to find a permanent place to hang it!

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We have angry baby, and we have a handmade weighted blankie from Angel Love Boxes! Let’s see if this thing works!

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“Whoa, what is this? I think I like it!”

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Another sparrow face for cousin Anya.

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“OM NOM NOM, DELICIOUS BLANKET.” And we have a winner.

For those of you who wanted to know how the cat-cat-baby meeting went… here you go. Pretty uneventful, but that’s what we want!

And now, on to the rest of the photos!


I could not resist. Mouse over it. Again. Again. Again.

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Aunti Staci reads a book to BabyBug while Mama packs

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BabyBug in front of her first fully-lit Chanukiah. You can see how interested she is.

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A church group sponsored a “Meal of Love” at Ronald McDonald House, and one of the ladies went around to the different tables and took a Polaroid (!!!!!!) photo of each family that wanted one. (The new ones, not the old-school kind). I love this because all of us are smiling. Well. Almost all of us.

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Asleep on Mommyshoulder.

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Sometimes we fall asleep still holding our toys.

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Nommylicious paci. Sweet eyelashes.

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We are laughing because our cannula tape came off. Baby Win!

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Aunti Staci babysat for BabyBug at RMH on Saturday night so we could attend Mandy’s choir’s holiday concert just up the street. We received a string of adorable photographs all night. If only Leah’s oxygen supply company hadn’t totally misunderstood us when we told them when to pick up her large tank, the whole night would have been flawless. Not sure how “not between 8PM-11PM” became “only between 8PM-11PM,” but what can you do?

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Sweet charming Bug

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Twinsies

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GiggleBug

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“Aunti Staci, I’m sorry I peed on you while you were changing my diaper. Well, kind of sorry. Actually, it was pretty funny.”

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We received this beautiful little baby quilt from a member of Mandy’s choir (from which she’s currently on hiatus because BABY). So gorgeous!

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“ILOVEYOUMOMMY!”

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“Here, let me pet your face.”

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Love.

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Our little family!

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“Cheeeeeese!”

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“Really, Mama? Seriously? *eyeroll*”Already a teenager at 7 months old.

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Goodbye, room!

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Falling asleep on the ride home.

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Asleep on the ride home.

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Groggy and looking a bit stoned on the ride home.

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Knocked out on – well, you get it.

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“So… this is new.”

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BabyBug meets Glo-Worm.

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BabyBug loves Glo-Worm.

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BabyBuggy after her first bath at home!

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Snuggling with Mama

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Silly Bug

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“How do I look?”

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“Do I have a hair sticking up?”

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“OH MY GOSH! THIS IS GOING ONLINE, ISN’T IT? I’M SO HUMILIATED!”

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OMNOMNOM. Mommyfinger.

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Mama’s new pajamas. ‘Cause I know you wanted to see them.

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“Mama, what’s sunlight?”

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BabyBug asleep on Gran’s lap

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“Hm. Uncle Ralph? How come you’re always here? Wait – you live here???”

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“Uncle Ralph, why you gotta be so silly?”

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Buggy concentrating very hard on her own personal ladybug cheerleader on Uncle Ralph’s shirt

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Snuggling with our Binkeez. I wish they made them in grown-up size! It’s so soft!

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Delicious bear lovey hiding under the Binkeez

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Baby taco! Baby pita! Baby ice cream cone!

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Tasty bear lovey!

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Leah still loves her Glo-Worm!

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I know my closest relatives will appreciate this. It’s in our DNA to appreciate this.

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Oh yes. I missed this face.