I wrote this last week, intending to finish up the photoblast by the end of the week, but as you know, some stuff happened and I didn’t have time. So I’m posting the belated update on Leah’s ABR as well as pictures to begin catching up to the present.

Here we go:

Leah had her auditory brainstem response test last Tuesday morning, so we had a little visit with LeahBug’s pals in PICU. We got to see a lot of Leah’s nurses, as well as the very sweet guy who delivered the hospital breakfasts and lunches to the PICU and Peds rooms. Even the folks who maintain the rooms remember LeahBug – she makes friends everywhere she goes! There were some nursing students there as well, and their professor thought Leah was just precious.

By coincidence, PICU put us in the room that was vacated last Monday by one of Leah’s little friends. Both babies (Leah and her buddy) were in NICU and PICU together, and the other little girl transferred to a different type of facility on Monday so she can try to transition back home after her recent return to PICU.

The test Leah had Tuesday was meant to determine whether she has genuine hearing loss or whether her failure to respond to some auditory stimuli is a matter of learning to tune stuff out after nearly 7 months in the ICU with alarms constantly going off. The test is done while the baby is unconscious, which can either be via sleep or sedation. Since Leah was wide awake, they proceeded to place an IV, and it took them three attempts and four nurses and a student, including the charge nurse and a NICU nurse. That’s our tiny-veined Bug! She screamed so hard from the whole ordeal that she wore herself out – and they wound up beginning the test without sedation because she was fast asleep. How’s that for irony? In any event, she started to stir, so they did have to go ahead and give her the drugs so they could finish the test.

The results haven’t yet been read and interpreted by Leah’s ENT, so we don’t know for sure what this will mean for Leah, but the tests showed that Leah’s hearing was largely normal, except that 1) her right ear is more firmly in the normal range than her left ear; 2) she does have some left-side “mild high-frequency loss at 4kHz only.” Additionally, the DPOAE test was successful in her right ear but not her left, which can sometimes indicate a hearing problem, but in Leah’s case it probably just reiterates what we already know: Leah’s left ear canal is particularly small and possibly oddly-shaped and that can interfere with physical examinations.

Here are some pictures from last month – I have more to share but this will have to do for now.

This goes in my “Babymoticons” folder under, “Really? Really?”

Um… I think this one does, too.

We are liking our high chair lately!

We’re trying to stay neutral in the great baseball team debate (because Grandma likes the Red Sox and Grandpa likes the Dodgers) but Leah seems to be expressing her own opinion. I guess we’ll need to get her a Red Sox jumper so we can determine whether she prefers the Red Sox or just dislikes baseball entirely. Personally, I prefer figure skating. I’m just saying.

Just a little flashback to the first time Leah wore this jumper…

She’s calmed down a little bit, at least.

Goofy baby

Baby toes are the best toes, but Mama knuckles are the best knuckles.

Mama fingers aren’t so bad either.

But babytoes are still the best.

Somebody loves her Mommy very, very much.

Hint: It’s a SILLY somebody.

Forehead kisses!

“ACK. MOMMY!”

“ERM, Mermy, yer squershing mer ferce.”

SuperBug contemplates her next move.

Aaaand it’s her unbeatable SMILE-leg-kick combo!!

“Cellophane, Baby Cellophane…”

That’s a lot of effort for one tiny baby face.

But it paid off!!

We are just like our Aunti Staci – NO SOCKS FOR FEETS!

Bendy Baby does leg lifts.

NOM.

We might have the sweetest baby on the planet.

No socks for feets. Socks for mouths.

As I said… sweetest baby on the planet.

We love our veggies, even if we only get to nom on them.

Watermelon is pretty awesome too.

Dainty baby

Goofy baby – again.

Pleased-as-punch Baby

Couldn’t think of anything to put on her face for Passover so she got frogs. ‘Cause they were in Pharaoh’s bed… and on his head…

Bendy baby doesn’t need no steenkin’ diaper.

Our first Pesach! Seder at Auntie Kimmy’s.

Definitely BFFs right here.

“Mama, what’s Dayenu?”

Let’s get this meal started already!

Our little family!

Sweet froggy cheeks

Valley girl selfies.

Whew, what a week!

Leah had her surgery one week ago, and came home Saturday morning. The procedure went well, and everything is tucked back into place. The hernia was definitely a congenital defect, and we were told it was quite large – but they were still able to repair it laparoscopically, thankfully. There was another small defect they found that did not need to be repaired – I can’t remember what the surgeon called it.

The docs had initially told us to anticipate a 3-5 day hospital stay, but after the surgery her surgeons felt it had gone smoothly enough that if she did well with overnight observation she could go home the following day. Leah spent nearly the entire day sleeping, and was super-fussy when she was awake. We got a few weak smiles out of her, but she was mostly just wanting to sleep. She got pretty puffy by Thursday evening, and they had to give her an extra dose of Lasix (she hadn’t gotten her meds before the surgery Thursday morning). Leah spent most of Friday sleeping as well, but when she was awake she went back and forth between moderately cheerful when still and red-faced and screaming when moved.

On the bright side, by late Friday morning, Leah’s numbers were good enough that the surgeons felt comfortable discharging her as soon as her pain was under control. Since she is tube-fed and has oxygen at home, there wasn’t a whole lot they could do for her in the hospital environment that we couldn’t do at home, aside from administering IV pain meds. So once she was able to transition from IV morphine to “oral” (g-tube) hydrocodone and acetaminophen, she was good to go. We wound up leaving the PICU around 6:30PM or so, but not before delivering a pie to the nice food service lady who brings the evening meals. It was pretty funny. A few days before Thanksgiving, Mandy’s brother had told her he would bring her a pie from his work, and then we were discharged before he could do it. She forgot ages ago, but he remembered that unsliced promise. When he came to the hospital Thursday night, he came bearing cookies for the nurses (because he’s cool like that), and yes, a PIE.

That wasn’t the only special delivery we made in PICU on Friday! We also brought up the blankets that Binkeez for Comfort sent for the kids of PICU. They each have a tag that says something to the effect of, “We are officially Binkeez Buddies! Love, Leah Valerie.” Pretty cute. We delivered those to the child life specialist, who will distribute them as needed. It was cool to be able to do something nice for the PICU kids. I hear the NICU babies get all the attention.

After our special deliveries, we went back to the Ronald McDonald House for the night so we could be near the hospital in case there were any issues. Thankfully there were no big issues overnight. Leah was still in a whole lot of pain, which is understandable, because abdominal surgery is pretty miserable even with just laparoscopic incisions. She managed to get through the night with only one set of heart-wrenching screams at about 4AM when Mandy had to change her diaper.

The hernia repair wasn’t Leah’s only procedure on Thursday. They also did another esophageal dilation with steroid injeciton. Leah’s stricture continues its refusal to cooperate. The docs were able to dilate up to 12mm on Thursday, but unfortunately, at the outset the stricture had already tightened to about 2-3mm, so the odds are pretty high that Thursday’s 12mm will be 2mm again by the next procedure. They have said they will keep dilating biweekly for three months along with the steroid injection, and if that doesn’t work then we are likely looking at another major surgical repair. We’ve been told there is about a 50% chance that the dilations will work – which means there’s also a 50% chance that they won’t. (Hey look, I did math!) To me these are not good numbers. I do not like them, Sam I am. (Seriously. Smile and nod. Very little sleep over the past few days.) It’s particularly disconcerting because we’re told the procedure they would recommend if they have to repair the esophagus only has about a 50% chance of success itself. More unpleasant numbers!

So yes – we came home Saturday after a shorter-than-anticipated stay at the Ronald McDonald House and PICU. We don’t love being at the hospital, but since we had to be there, it was really nice to see friendly and familiar faces. Leah had lots of visits from her PICU nursie buddies and other PICU folks, and in the cafeteria on Friday morning I ran into a family we knew from NICU last summer. Their little girl had surgery on Friday and it sounds like it went well, so yay. We saw some familiar faces at Ronald McDonald House, too, although we didn’t get to see everybody.

We left Ronald McDonald House around 9:30AM on Saturday, aided by our dear friend J, who came to our rescue and helped us shlep 7 days’ worth of packed suitcases back to our house. Had we known we would only be there for three nights we could have packed a heck of a lot less!!! But it’s okay – I’m just glad we got home early. Leah was in surprisingly good spirits for the rest of the day. You could tell that she was uncomfortable, but we were able to hold her, and she took a nice long nap in her Gran’s arms. We gave her a little sponge bath, washed her hair, and even let her sit in her special high chair at the dinner table. She had her moments of owie-ness, but overall she had a pretty good day, and continued to improve a little bit each day. She was a tiny, tiny bit wheezy as well, and although it has improved, it’s still a little worse than usual.

I wrote the first draft of this blog a few days ago. Since then, we’ve had a bit of an adventure. Leah has been hiccuping and gagging more than usual all week. I have been communicating with her surgical NP to keep her apprised of Leah’s status, but it seems those symptoms are not too abnormal considering that she just had surgery on her diaphragm. However, on Monday and Tuesday Leah started spitting up a little bit, and on Tuesday morning she had spit-up on her face and outfit when we woke up. Later in the day she spiked a little bit of a fever – it was up to about 100.6 when we gave her Tylenol around 2:15PM, and went up to 100.9 before starting to come back down. Not too terrible, I know, but considering the recent surgery and the even more recent spit-ups, we decided we might as well have her checked out. I had mentioned the fever to her NP and asked when we should bring her in to see her primary care doc, and once she knew Leah had a fever she said now would be a good time to check in with primary care. We made an appointment for Wednesday afternoon, but when Leah would not calm down and her fever started going up instead of down, we decided we wouldn’t wait and would just bring her in to urgent care. We left the house around 3:30 or so, and got to urgent care a little over an hour later. They made an appointment for her at 5PM, the first appointment available for after-hours urgent care.

During her appointment we got to have the fun new experience of introducing Leah to a doctor who was not at all familiar with her history. The conversation started with, “What are the little stickers on her cheeks?” and ended 11 months later with a referral to radiology for a chest x-ray to check for potential aspiration. We trekked down to the next block for her x-ray and then trekked back to await results. The doc came in a while later and told us the radiologist had seen something small and subtle on the x-ray and they wanted to run it by surgery – they took her off of feeding at that point in case she was aspirating due to reflux. Her last feed had ended around 4:30 or 5 and by now it was 6:30 and she was starting to get hungry, but he advised that we wait until we heard from surgery. He observed that everyone he talked to seemed to be very familiar with Leah. Yep. She goes way back with these folks. Maybe half an hour later he said surgery wanted to examine her, which meant we had to walk across the street and bring Leah to the emergency room, since that’s the means by which a person can see surgery after their clinic hours. Thus began the second half of our BabyBug 11-Month-Birthday Adventure. I think we all know that 90% of the time in the ER is spent waiting, waiting, waiting. So here’s how the evening went:

Wait.

Speak with surgical resident, who IS, thankfully, quite familiar with Leah’s case. (Not that there was anything wrong with the doctor we saw at the peds clinic – he was very nice. It’s just a lot easier working with docs who know Leah’s history since it requires so much explanation.) He had not had a chance to review the x-ray results but wanted to examine her. She sounded fine. Yay.

Wait. Wait. Wait.

Surgical resident comes back with the ER doc on duty and tells us that radiology’s interpretation of the x-ray was possible aspiration, possible atelectasis (in which the lungs don’t open all the way). It is a pretty common complication after intubation, although they see it mostly in adults. They don’t want to resume feeds until they have a chance to speak with the attending.

Wait.

Get frustrated over neighbor’s IV, which beeps for 10 minutes. The staff do not seem to notice. Someone finally turns it off. I thank him. Several minutes later it starts beeping again. *facepalm*

Wait.

Meet our cool nurse with shiny butterfly earrings. Surgery wants her to draw blood for a CBC but she thinks maybe an IV might be better just in case they decide to admit her. I tell her Leah’s veins pose a challenge. She goes to find the charge nurse, who is reportedly excellent at placing IVs.

Wait.

A guy comes in and says he’s going to get the same charge nurse.

Wait.

At some point, yet another guy comes in, sees that the baby is sleeping, and leaves.

Wait.

The nurse returns. Apparently guy #2, who didn’t identify himself, was the charge nurse but didn’t want to place the IV because the baby is sleeping. HELLO. PLACE THE IV. We have been waiting an hour for this lab. The sooner she gets blood drawn, the sooner we can leave.

Wait.

Attempt to shield my sleeping baby’s ears from the barrage of profanities that streams from a room down the hall, where a patient has decided he prefers the previous nurse and would like the current nurse to leave. It’s not the ER if there isn’t a screaming patient in another room and what appears to be a homeless guy sleeping it off on a gurney down the hall. Said homeless guy is the one with the beeping IV. The evening is complete.

Wait.

Nursie with shiny butterfly earrings (Leah is a big fan of these) gives up on the idea of an IV and draws blood herself. Baby has a history of poor bleeding from heel pricks so she draws from the fingers instead. It takes so long to get enough blood that the blood clots before it reaches the lab. Lab sends it back. They have to draw again. This time they get it from the heel. Now we know – her heel gives blood again. Woo.

Wait.

Wait.

Wait some more.

Surgery was in the OR but they finally come down and tell us the labs are good and we can go home, but we should space out her feeds to prevent aspiration, and watch for any more fever or vomiting. We can resume feeds. He goes out to prepare discharge papers.

Wait.

Someone comes into our room. Ready? Nope – he just wants something from the cabinet.

Someone else comes into our room. Now? Nope – she wants something from the cabinet too. Suddenly our room is very popular. Someone else starts to come into our room but changes her mind.

FINALLY, we get our discharge papers and leave. It’s close to midnight.

Soooooo. That’s how we spent Leah’s 11-month birthday – with an 8.5-hour trip to the hospital. I’m glad that they didn’t keep her overnight, but it was still a very exhausting day. It sounds like they do think she’s experiencing atelectasis, and they said it is something that should self-resolve over time. Leah did pretty well yesterday, but today she had a projectile vomiting episode in the morning. The previous episodes had been just regular baby spit-up, but this was full-on spewing of her feed. My only consolation is that maybe, possibly, perhaps this means the esophagus is still open. Please?

I know I already posted this on Facebook, but I just want to say that we are SO grateful to all of you for your sweet messages, comments, thoughts, prayers and encouragement this past week (this past year, really, but you know what I mean). It’s not easy to see that beautiful, sweet, tiny face all scrunched up in pain. It really does help us to know that people are thinking about her and sending positive energy in her direction.

In thanks, I shall shower you with photos. Behold, photos!

<3

“Yeah? You got a problem?”

This is the face of a sleepy Bug.

A few minutes later…

Our little rock star at therapy! I wish they still made this toy – the one they make now has different songs and they aren’t as fun.

“Just a baby eating her toes. Nothing to see here, people. Move it along.”

Selfie time! Duck face for Aunti Staci, sparrow face for cousin Anya.

The sweetest baby I ever did see. Also… eyelashes.

Watching Cool Auntie Erin’s band practice. Or, you know… sleeping through Cool Auntie Erin’s band practice.

And to think, mornings used to have no redeeming qualities.

Somehow the baby grew a cat nose and whiskers.

“Timber!”

A brief moment of interest…

…followed by a competition for Mommy’s attention.

Oh great – now everybody has to get involved.

Family selfies! “Mommy, you are SO WEIRD.”

“Mommy, where did your tongue go???”

“You see what I put up with? These two…”

Reading the book that somebody bought from LeahBug’s wishlist. There was no name on the packing slip, so if you’re reading this, THANK YOU!

It’s a no-dresses day! Time for our friend B’s birthday party.

BabyBug chilling with Auntie Faithie.

Tuning out the party.

A day at the park means we wear a hat! Leah says: “HAT. DO NOT WANT.”

“Are you kidding me with this thing?”

“MOMMY! WHAT DID YOU DO TO TIGGER? Don’t worry Tigger! I’ll save you!”

Raspberries

Happy Bug

She’s just too cute.

That smile!

BabyBug Beak. She has been making this silly face since her NICU days.

A screenshot of my very favorite moment from the swinging video. That is pure baby joy!

Wheeeee!

MamaBug and BabyBug

MamaBug’s nails provided entertainment for the whole ride to RMH. Good times.

“They’re doing WHAT to my diaphragm tomorrow?”

“Is there any chance I can talk them out of this?”

“Oh well. Let’s play!”

Silly baby

SuperBug all ready to fly off to surgery. This picture brought us incredible support during Leah’s surgery. The Special Miracles – Down Syndrome page shared her photo and roughly 18,500 people liked it on their page. A little over 800 people shared it on their own walls. Another 13,700 saw the picture through Leah’s Facebook page. The Butterfly Fund, the org that so generously shared Leah’s wishlist, also posted it and over 600 people liked it. This means that at minimum, almost 33,000 people saw the photo, not counting the friends of the folks who shared it. It received well over 1,000 comments wishing Leah good luck and sending her positive thoughts and prayers. These numbers just completely blew us away. We’re grateful for the continued support of our family, friends and community, and also amazed at how many people cared enough to take a moment out of their day to send good wishes to a baby they don’t even know. The constant flow of positive energy really kept me sane during Leah’s surgery and later when she was sleeping off the pain. I know she felt it too.

Mom’s Superhero!

This cape was made especially for LeahBug by Tiny Superheroes and was sponsored by one of Leah’s friends on Facebook who also has chronic health problems. Leah is definitely a tiny superhero!

Several friends and family members sent us sweet pictures of themselves in their Team LeahBug shirts on Thursday. Pretty sure little Josie’s was the cutest one. 🙂

Auntie Z’s little boy Ry Ry made this special gift for LeahBug in day care!

LeahBug does love her toes.

Just a girl and her GloWorm.

Puckering up. She’s been doing this a lot lately. I think it’s because I make this face at her so often.

We have everything we need – Binkeez, GloWorm and toes. Armed and ready for surgery!

Leah was VERY fussy and uncomfortable after the procedure, but after a while she finally fell asleep. Poor bunny. They told me to try holding her but I felt like that made things worse after a few minutes, so I put her back and let her rest in bed.

Gran and Bug

Always with the wires!

Saturday morning, after a night of morphine and sleep.

Leaving PICU at last! Bugs for dinner!

Toes. I love it when her tiny feet just randomly poke out of the stroller.

Do we look cool or what? They let us take her home in the gown so she wouldn’t have to have tight clothes against her sutures. We added some flair.

Uncomfy, but managing a smile for Mama nonetheless. Our little superhero.

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!

Out cold

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

Faithy’s birthday!

More monkeys!

Sweet monkey

Silly monkey

Goofy monkey

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.

Sleepy Bug

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.

“MOMMY!”

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!”

“Whatup, Gran?”

Sweet girl!

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

Baby Burrito!

“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.

“Cheeeeeeese!”

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!

Nummy fingers!

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!

Yay 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.

Pokey tongue!

Besties!

Sweet face with antennae.

Smiles!

“CHEEEEEESE!”

The world’s tiniest cat burglar?

More dress-up!

We LOVE dress-up! Sometimes.

Baby Bug and Baby Sister (Mama’s)

Sweet smile

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.

What an exciting week! Leah had her first physical therapy sessions this week – one regularly scheduled, and one that was a make-up due to a scheduling mix-up last week. Leah enjoys PT so far and I think she’s going to benefit a lot from it.

Leah had another dilation on Thursday morning. I’m happy to report that the site had not become further constricted; it was still at 7mm when they put in the scope. They were able to stretch it up to 9mm. The end goal is 12mm, but we’re not sure how long that will take. At this point they have her down for weekly dilations instead of the biweekly dilations they had initially recommended.

Leah’s procedure was a bit more rough on her this time around. I’m not sure why, but she seemed to be in more pain afterward. She was crying hysterically, and ultimately they had to give her some morphine to ease her discomfort. Her voice was hoarse for the rest of the day.

After Leah’s procedure, we took her across the street for her regular 9-month check-up. She saw her usual doctor and also one of the docs who treated her in the PICU. While we were waiting for them to come back into the room, Leah started trying to turn over. She has been rolling onto her side for a few weeks now, but she’s never been able to get all the way over. For some reason, on this occasion she seemed determined to get onto her tummy, and tried several times with no success. I think there was something shiny on the wall. When the doctor came in, I warned her to be extra cautious in watching Leah during the exam as she seemed determined to roll right off of the table. The doctor decided to give Leah a few minutes to play while she observed, and spotted the BabyBug so she wouldn’t fall. After a few tries, Leah actually rolled onto her tummy! With no help! Whaaaaat! Good girl!!!

Here is a video of Leah rolling over again this morning, on the floor, on a nice, safe foam play mat atop an area rug atop an extra-thick carpet pad, with lots of encouragement and prompting. But it figures that the first time she rolled over would be on the doctor’s exam table, several feet off the ground, with only her motivation for SHINY propelling her. ‘Cause that’s just how she rolls.

Okeedoke. Enjoy some pictures. 🙂

Just a random sweet smile.

We had lots of fun in our PT session.

We played with fun and exciting toys…

…we used fun and exciting toys as chin rests…

… and when things got too fun and exciting, we knocked out with 10 minutes to go.

Thursday morning. “Good morning, Mama! Where are we going today?”

“Dilation? Really? Are you sure we can’t just go back to Disneyland instead?”

By the time they were ready to take her in, Leah was REALLY hungry.

Afterward, she was very, very sad. I think this is post-morphine.

These little sleep smiles are just the sweetest.

Nicole of Nic’sNacks was kind enough to send Leah this ADORABLE hat a while back. I’ve been dying to dress Leah up in something totally ridiculous (read: adorable) so that she’d really look like a Cabbage Patch doll. Valentine’s Day proved to be the perfect occasion. With her teeny tiny nose, I think she really pulls it off quite nicely!

Cutest dollie ever!

“Hey, who turned off the sun?”

Proof that Leah was not entirely horrified by this experience…

…and proof that she was, at times, not amused. (The second pic was from a little bit later in the day)

VICTORY!