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!

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

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!

BabyBug visiting with her friend Jess!

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

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

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.

One determined baby!

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

Spinning BabyBug???

Sitting on our new exercise ball.

“LOOK AT ME! I’M SO PROUD OF ME!”

“This is HARD WORK.”

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.

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

He loves this tiny tot!

Dr. BabyBug makes a house call.

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

Then we did big-girl things like sitting up…

…and sticking our tongue out.

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

Good morning, Mr. Cheshire Cat!

“Mommy, it’s looking at me!”

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

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

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

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

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

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

“Make it spin, Mama! Make it spin!”

“Make it spin because I’m CUTE.”

“Mama. Make it spin. And pony.”

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.

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

Buggy chillin on her pal.

Cousin Jenna gets Bug Therapy.

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

“Silly Mommy, silly Mommy!”

“I love my Binkeez!”

Sweet face

Pony face

Melt-yer-freakin’-heart face

If babies could take selfies…

Hanging out with honorary grandma Cathy

Somebody isn’t waiting up ’til midnight!

Out cold like a polar bear!

“Mama, what’s a New Year?”

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

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

“This is my serious face.”

“Good morning, feets!”

“Look Mama! Two feets!”

Smooooooshy face

Meeting our buddy Ry Ry for the first time!

“What is it?”

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

“Peekaboo, Mommy!”

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

“Mamaaaa…. put the camera away.”

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

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

“WHEW! Neck support is hard work!”

Showing off our dinosaurs.

Cousin time!

Out cold on Maddy’s lap!

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

Reunited at last!

Somebody intercepted the baby between kid cousins! BabyThief!

See? Trouble.

Precious in purple

Besties

Seriously, I could stare at this face for hours.

(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!

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!

“HI GRAN!”

Asleep with our buddies

“Did somebody say SHOTS???”

Baby’s first rainbow

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

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

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!

Snuggle snuggle snuggle!

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

Asleep with Mr. Seahorse

“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…

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

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.”

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

More snugglies

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

But this is definitely a POUT.

Distracted Buggy is distracted. Her hand is so dainty.

“Whaddya want now?”

“That’s more like it.”

Selfies!

BuggyBug asleep on my arm.