A quick update

March 12, 2014

By Lisa

Sorry it’s been so long – busy week! Quick update – Leah had another dilation tomorrow (Thursday), and they will inject a steroid into her esophagus to help ease the inflammation and keep the stricture from tightening after dilations. They will keep her on the weekly schedule for the time being.

We also had an interesting discovery in speech therapy today – Leah has not been turning when she hears sounds and voices, but there seems to be a difference depending on what side the noise is on. She turned to investigate a rattle shaken on her right side even while she completely ignored it when it was on the left. In PICU all the bells and alarms were on the left – and the left side is also the side the ENT could not see. So we still don’t know what is going on, but it is something.

Trying a little something new with the cannula… We will see how it goes!

BabyBug Updates and a Photoblast

March 6, 2014

By Lisa

So! Some medical updates for you:

-I mentioned in an earlier post that Leah has mild obstructive sleep apnea. The ENT reminded me that she also has some central apnea, which occurs when the brain simply doesn’t send adequate signals to breathe. Treatment remains the same, but I want to make sure I’m being accurate since I’m sure I’ll use this blog for reference later on.

-Speaking of the ENT, Leah had a miserable appointment the other day. She had to get her little ears scraped out because she had a lot of wax, and she had her little nose scoped. NO FUN. I know it was much worse for her, but I’m not gonna lie – it was pretty freaking awful having to hold her still while she screamed and sobbed uncontrollably on my lap. They don’t have an exam table in there, so I had to hold her still (with the help of one of the nurses). Her little tears were rolling all the way down to her neck. Poor Bunny. She is due for an audiology test later this month; we’ve had some concerns about her hearing since she is still not responding to noises from sources outside her direct light of sight. I still think it’s more an issue of attentiveness since she was in the ICU for so long and it’s possible she has learned to tune things out, but at the same time it’s important to rule out hearing issues since many kids with Down Syndrome do have ear problems. And you could probably hit a gong behind this kid and she wouldn’t turn around to see what’s up. The doc was only able to see into one ear canal (although this is the first time ANYBODY has been able to see anything at all), and she said Leah’s eardrum activity looks good and she didn’t see fluid. No word on the other ear. Too itty-bitty!

-Our little chunky monkey hit 13.5 lbs today!

-The big update: Leah had a dilation today, and while the last dilation took her esophagus from 9mm to 10mm, this procedure had the doctor re-dilating her from below 5mm back up to 8mm. He doesn’t know exactly how narrow it was, but he knows it was less than 5mm because he couldn’t get the scope through. So we’re essentially back to square one. Her next procedure is scheduled for next Thursday, but the surgeons and the GI will need to confer and decide what they want to do next, because there is not much sense in continuing to do regular dilations if the stricture is just going to tighten again. The GI discussed perhaps injecting steroids into the stricture, but apparently this requires special equipment that may or may not be available at this hospital, particularly before next week. He also discussed the possibility of the surgeons needing to operate on the esophagus again, as well as the potential for a fundoplication, a surgical procedure that curbs reflux. The fundoplication has always been on the table as a possible necessity in the future – it just seems like maybe the future has arrived a little sooner than we thought. But I don’t want to jump the gun – the surgeons and the GI haven’t yet conferred, so all I can do is speculate.

And on that note… smile! It’s picture time!

Partners in crime.

“Aunti Staci, you are the master of selfies!”

Quality Aunti/Buggy time.

We love toys that make funny sounds.

Combining new skills (holding) with old ones (nomming).

Evolution of a raspberry.

Mommyfingers are the best.

Glow Seahorse has lost his batteries (due to a refusal by Fisher Price to issue a recall for spontaneously-combusting seahorses), but Buggy doesn’t seem to mind.

They are still best buds. As long as she can still eat his nose, she’s happy.

Goofy!

Grandpa Bill brought his face-toy!

“Grandpa Bill, I have a tongue! Nyah.”

“I wonder if I can touch my tongue to my nose! First I have to find my nose!”

Little troublemaker!

She gets it for a few seconds at a time, but it’s something!

Same with tummy time and neck support!

Oh. Okay. Caption, please.

“Are you for real with this outfit?”

Precious innocent babyface.

Practicing the “whatever” face for her teenage years.

Cabbage Patch Baby nose.

Oh, this face!

Bugs Bunny with Cool Auntie Erin.

Deep in conversation with Mr. LionBug.

This faaaaaaace.

“Cheeeeeese!”

Look at those little arm rolls!!

“It’s the funniest thing, Mama – somebody is pulling my hair!”

“Is it possible for me to be any cuter? What do you think?”

Yes. Yes, LeahBug. It is.

A serious moment with Uncle Ralph.

A less-serious moment with Uncle Ralph.

More tummy time.

Our hardworking little LadyBug.

“Work or noms? Work or noms? I’ll take noms, please.”

The physical therapist didn’t give her a choice. Work. No noms. So she raspberried instead. THE WHOLE TIME.

There were, of course, a few moments when she just made silly faces.

Silly baby, silly grandpa.

Like Grandpa, like Mama, like BabyBug. All silly.

That’s a troublemaker face. Oh yes. That’s an “I pulled off my cannula” face right there.

“FEED ME KRELBOURNE, FEED ME NOW!”

“Hmm. Mamafingers. Those could be breakfast.”

Lion feet might be easier to chew.

This is a disgruntled post-procedure baby. “Mama. Why must you make me wait to eat?” Sorry, Buggy! The nursie made me!

Sleeping with a handful of cables. Some things just don’t change.

“Well hello, Uncle Ralph!”

“Uncle Ralph… what happened to your face toy?”

Fun with the camera!

No caption necessary.

I believe I said Nakie Baby can’t be trusted?

February 28, 2014

By Lisa

Apparently, neither can Clothed Baby.

Our little ladybug had an adventure today! Gran was with BabyBug because Mama had an appointment. Not half an hour after Mama left, Mama (that’s me, in case you weren’t sure) received a phone call from Gran. “Lisa! Emergency! Leah pulled out her g-tube! What do I do?” Oh, BabyBug. This makes the first time she has actually physically pulled it out herself as opposed to it getting stuck on something – and it has been a very long time since that happened. Definitely the first occurrence of 2014. Leah’s surgical nurse practitioner was kind enough to see her on short notice, so Gran and BabyBug took a little field trip. Good times.

In other news, Leah had speech therapy the other day, and the cutest little 4-year-old girl became totally enamored with her in the waiting room. So they came over to sit by us, and the other mommy and I chatted while the kiddo giggled nonstop at how funny and cute our little bug is. And for Leah’s part, she did not take her eyes off of this little girl the whole time we were chatting. She was fascinated. I’m pretty sure she was trying to figure out whether this was a very large baby or a very tiny grown-up. She hasn’t spent a lot of time around other kiddos. It was pretty adorable.

During our visit, Leah’s speech pathologist assessed her for non-swallowing speech services and found that she does qualify for speech therapy, so she is going to set some goals. Leah is so expressive that I think sometimes people don’t see her receptive language issues until we really point them out (which is funny, because from what I’ve been reading, in older kids with T21, it’s usually the other way around!). She doesn’t respond to sounds by looking for them or even responding to them, at least not until the source gets into her line of sight. I don’t think it is her hearing, though of course I could be wrong. She will be assessed again in the near future, I’m sure. I think that she learned to tune things out during her nearly 7 months in ICU, and now needs to be taught how to attend to sounds that are important. When Mandy came home the other day, she talked to Leah from the other room before she came into the living room, and Leah had no reaction – until she saw her Mommy, and then she was pleased as punch. Hopefully this is something we can work on.

I can’t remember if I already posted this, but at Leah’s GI appointment, the doc said he could feel her liver. He is going to run some tests next week when they do the next dilation, but didn’t seem too concerned.

Oh, one more thing: we are TRYING to have Leah sleep in her own room tonight. This will be a first. Wish us luck. I think it’s harder on us than it is on her.

Raspberry Baby, for real!

February 26, 2014

By Lisa

Sorry for the error in the previous post. NOW… I promised baby raspberries and baby raspberries you shall have!

Somebody weighs 13 lbs…

February 25, 2014

By Lisa

Yep. A certain little lady now weighs 13 lbs, 2.2 oz. Go BabyBug!

That being said, there was a 2-month-old in the waiting room who weighed 14 lbs. Ah well. Our girl grows at her own special pace. 🙂

A week later…

February 22, 2014

By Lisa

So! I’m terrible – haven’t blogged in a week! What has been going on? Hm. Leah had another dilation on Thursday. She definitely handled this one better. The previous procedure was performed under fluoroscopy, and I think maybe because that takes longer her recovery was a little bit more difficult. The aftermath of this third dilation was more similar to the first one. They were able to stretch the esophagus to 10mm circumference, up from 9mm the week before. They didn’t go any further as it was already a tight stretch. We are taking this next Thursday off, and Leah will have another dilation on March 6. They also replaced her g-tube with a slightly bigger size (still the AMT Mini-One). I got to meet a couple of the AMT reps since they were at the hospital at the same time and the surgical NP introduced us. Could I resist poking fun at the Mini vs. Mic-Key thing? Of course not. But I told them that Leah met both of them and likes Minnie better – so hopefully that made it okay. 🙂 She has definitely handled the Mini One better than she did the Mic-Key button – she had terrible granulation with the Mic-Key. With the newer, larger Mini we’re seeing a little bit of leakage, but hopefully that will subside once she’s adjusted to it.

We also received the results of Leah’s sleep study this past week. Leah does have mild obstructive sleep apnea, as we thought she might. Because she was already on oxygen to address the suspected sleep apnea, the “plan of action” will remain the same: She will stay on 1/4 liter of oxygen at night. Alas, this means we have to keep putting stickers on her sweet little cheekies. We leave them on for a few days at a time so we don’t have to rip them off every morning, but it’s still so sad to see the red circles on her cheeks when we finally do take them off. She does have such darling little cheekies.

We have been trying desperately to keep LeahBug healthy this week, as Mommy, Uncle Ralph and Auntie Jo all have the plague. Or, you know, a cold. So far I have managed to escape, but I’m not taking anything for granted – Emergen-C and Yin Chiao every day for Mama! I’m convinced that our cat Lobo is responsible for the spread of the plague through our house, since he goes into everybody’s room and demands attention. I’m thoroughly neurotic, so I refuse to touch him while people in the house are sick. At least my 18-lb black cat (Jeepers) is a LITTLE more loyal.

The other new development this week: Leah has discovered “blowing raspberries.” Grab the umbrellas!

I’ll catch a raspberry for you soon – but in the mean time, enjoy these videos:

And now, photos!

This kid is ridiculous. For real.

OM NOM NOM

RIDICULOUS, I SAY! LOVE THIS FACE.

LOVE THIS FACE SO MUCH.

Smooooooshy face

My kid is beautiful. That’s just all there is to it.

“Um, Gran? Hello Kitty? I don’t know about this…”

A little collage I made for all the new people who liked Leah’s page this past week – nearly 400 in total! A sweet Mama of ADORABLE TWINS with Down Syndrome (like, SO CUTE – you don’t even know. You have to click.) was kind enough to share LeahBug’s link on her boys’ Facebook page, and a whole bunch of people decided to start following the Bug! Yay! More cheerleaders!

Om nom nom, delicious speech therapy tool. (Looks like a toothbrush!)

Aunti Staci tried very hard to get BabyBug to put the paci in her mouth by herself. Grandpa Bill says it looks like she’s smoking it.

More cute face.

The decline from sadness to sleep in roughly five minutes. She didn’t even cry – just made a ton of those sad pouty faces.

Close-up on sad pouty face

“This is my SLEEPY CRANKY BABY face.”

I’m not sure what this face is. Caption, please?

Dilation Thursday! She always looks so teeny tiny in the crib when they bring us back to the recovery unit.

Back to sleep on the way home.

“Oh? Don’t stick out my tongue? You mean… like this? How about like this? What about like this?”

This outfit is so freaking cute.

Is there such a thing as happy pouty face?

Sweet bug

BFFs.

Laundry day! This one goes on delicate.

Nakey Baby can’t be trusted not to pull on her g-tube.

What is that face? Silly girl.

“Here, let me pre-rinse this for you.”

What a ham. Kosher ham. Kosher honey-baked ham.

Roly Poly Bug

February 15, 2014

By Lisa

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!

A fun weekend!

February 10, 2014

By Lisa

I am posting tonight in honor of Aunti Staci, who needs some BabyBug photo-therapy after being rear-ended this morning. She also felt it was very creepy to keep seeing the BabyBorg photograph as the LeahValerie.com iPhone icon (since I guess it shows the most recent photo?). So here you go, Aunti Staci – another photoblast just for you!

Leah had a lovely weekend once she was all cleaned up from her sleep study. On Saturday we celebrated Jenna’s birthday with a table full of wacky, silly cousins. There was at least one hot-potato incident – as in, “Hey, can you please pass the baby?” and then she proceeds to be handed around like a game of hot potato until she gets to the appropriate cousin. Although usually in a game of hot potato people don’t try to sneak in a snuggle with the potato before they have to pass it along. Still.

On Saturday afternoon, Aunti Staci came over, and then Grandpa Bill and Grandma Barbie came to visit! Random silly moments in the BabyBug household: Aunti Staci had Leah on her lap and Leah was making all sorts of fun noises. Aunti Staci asked LeahBug, “Are you pooping?” and then sang it to her in a random melody. It reminded me a lot of “Do You Love Me” from “Fiddler on the Roof.” So I sang back, in Leah’s voice… “Am I poopiiiing…”

In less-amusing news… Leah has another dilation scheduled for this Thursday. It was supposed to be next Thursday, but there was a scheduling issue with the doctors. Sigh. Here we go again!

Okay – here you go, Aunti Staci!

Leah returned from her sleep study in dire need of a good shampooing – although in retrospect this would have been the PERFECT babyhawk opportunity.

The winner of the “pass the baby” game. Happy birthday, kiddo!

Naptime with Abby!

“OH HAI JENNA!”

“Your hair is so pretty! And by pretty, I mean nummy!”

Silly Cousin Crew

“Mama, is this shopping?”

“Auntie Jo, your hair is red!”

Jeepers Creepers is starting to take an ever-so-slight interest in LeahBug.

“Something is in my bed. It appears to be a tiny human. I must investigate.”

“It stares back at me. Hmm.”

“It looks like a hand, but it is very small.”

Then he learned that it was indeed a hand when she grabbed a fistful of fur. He said, “Oh HELL no” and stomped away.

But he came back at a later date to continue his investigation.

Cool Aunti Erin’s band!

LeahBug, violence is never the answer.

This picture just busts me up. She has a mustache and beard, just like Grandpa Bill!

“Look, Mama! Toes!”

Such a sweet face. She loves that Gloworm.

On the swing again at OT! We have a smile and a squint.

Sometimes it’s the tiny things that keep us entertained. The very tiny things. Don’t worry – this is polish made especially for bitty bitty people, and we didn’t polish her fingernail since they spend too much time in her mouth…

…much like this…

…and this.

I love this little expression. I’m still figuring out what it means, but I love it.

Rabbit ears for lunch!

“Wait, hang on – I have something to say, but let me just finish this ear first.”

Inspecting her newly-purple toenails. “Um, Gran? Something’s different here.”

BabyBorg

February 8, 2014

By Lisa

In case you’re wondering, this is what an Angry Baby looks like when she’s tattling to her Mama on FaceTime.

And this is what she looks like when she realizes that resistance is futile and she might as well get some beauty sleep.

Can’t wait to see my favorite ladies when they get home in the morning!

As promised, the long-awaited PhotoBlast

February 8, 2014

By Lisa

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

Fingers are delicious. FYI.

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

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

“Look Mama! I have a foot!”

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

“Can I eat my dress for dinner?”

Have you ever seen such a cute ladybug?

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

Sweet face

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

“Oh hi, Mr. Great-Grandpa Man!”

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

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

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

It’s a Grandpa Bill! Giving kisses!

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

Quadruplets.

FaceTime with Ry Ry!

“I need more toys, please.”

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

First, Leah met Daisy Duck.

Then, we met Winnie the Pooh!

Leah introduced Gran to her new friend.

Gran and BabyBug were up to no good.

We met Eeyore, too. He was a grump.

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.

The sweetest mouse in town.

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

No caption needed.

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

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

Gran wanted to meet Minnie too!

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.”

In case you were wondering…

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

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

She’s a real partier, this one.

Cool Auntie Erin and her bandmates

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.

Deep in conversation.

A kiss for Mr. LionBug. Possibly a nibble.

“He just said something really witty!”

Yup. She loves him.

Aunti Staci is helping us practice sitting up!

“Fingers are yummy. You like my stickers?”

Stole Mommy’s spot. Feels no remorse.

Morning selfies!

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

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?????”