New Year’s Eve!

I know we are long overdue for an update! I’ll be sure to post some new pictures soon. In the mean time I just wanted to say thank you so much to all of you for helping us to get through 2013. It would have been a lot harder without all of your support and encouragement, so thank you for everything. See ya next year!

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Wrapping up 2013 with lots of family!

What a wonderful week full of family! Friday night we had our annual gift-giving and nom-eating celebration with cousins BB&E – usually this occurs on Christmas eve, but they were going to be out of town this year so we did it early. Over the weekend, we had a couple of visits from cousin Jenna and her moms, and Aunti Staci brought BabyBug’s 94-year-old great-grandpa to visit. During the week, Grandma Bill & Grandma Barbie came to visit, and then Aunti Staci came back with friends. Gran came over to visit a few times, and BabyBug hung out with Uncle Ralph too.

As we do every year, we spent Christmas day with Mandy’s brother and his family, since they celebrate Christmas. BabyBug was chipper this morning (until her bath), but she fell asleep in the car and then slept through most of the day. We kept checking on her to see if she’d wake up and visit, but she was determined to get her beauty sleep! She finally woke up a little after 4PM and had some nice snuggle time with her Uncle Bry & Auntie Co. It was a lovely day!

And now, what you’ve been waiting for… pictures!

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Oh, we are dainty!

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“CHEEEEEEEEESE!”

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“Heehee, Grandpa Bill, you got a toy on your chin!”

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“ZZZZZZZ.”

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Out cold.

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Does it make me a terrible person if I am thoroughly amused by this? Sleeve ears!!!

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Somebody was super cheerful this morning!

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“Did you say bath?”

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“Oh gosh. There’s a dress coming, isn’t there?”

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“I KNEW IT!”

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“Oh, hey, this isn’t so bad!”

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“Actually, it’s kind of tasty!”

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“But that doesn’t stop me from giving you a CrankyBug face just for the heck of it! AYE!”

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Snowman!

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Asleep with our dollies.

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Awake with our dollies.

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“MAMARAZZI!”

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Posing in cousin Sasha’s sparkle-chair – ahem, the Empress’s throne.

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Tap-dancing arms!

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Disco arms

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“CHEEEEEESE!”

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“Hi, this is my SRSLY? face!”

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“Vogue!”

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“Mmmmm, it tastes like red!”

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Family picture!

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Somebody did not get the “say cheeeeese” memo.

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“Hmm. Dress. Interesting.”

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“I’m just gonna chill here and play with my dress, k guys?”

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“Oh, were you trying to take a picture?”

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Mommy and cousin Sasha

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Mommy and cousin Sasha and cheerful Buggy

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Mama and Bug

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“SHINY.”

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Family picture!

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Bigger family picture!

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Gran!

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Auntie Co

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Uncle Ralph

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“GUYYYYYSSSSSS, ENOUGH PICTURES!”

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Taking the hint, I began to photograph the cat.

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Kushka!

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It’s not Christmas at Bry & Co’s if I don’t get a photo of Kushka under the tree!

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And this, this one is for me.

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.

BusyBug

Whew! We are nearly halfway through BabyBug’s Big Week O’ Docs. Including her two in-home assessments by Regional Center, she has 9 appointments this week – plus one emergency appointment yesterday.

Hm. What has been going on these past few days? Well, Sunday morning, we woke up to the sound of Uncle Ralph on the phone with the electric company. Something about a power outage. What?? Noooooo! It turns out our whole neighborhood was out of power. Sigh. We had no choice but to wait it out, so we went about our day. Cool Auntie Erin came over and we went to the craft store for her 16th birthday present, supplies to make jewelry to wear on stage at her band performances. After the store we came back to the house, and Erin made some earrings, a necklace that says, “ROCK ON, SISTER,” and a bracelet. ‘Cause she’s cool like that. Later, we went to a party hosted by Mandy’s choir director. Every year, he hosts a holiday party just for the women in the choir – they jokingly call it the lesbian party and he gives out party favors like little tool kits and battery-powered screwdrivers. This year he had some little drawings and I won a step-ladder. Yay! No, seriously, YAY. Ours is too short. Or really, we’re too short and therefore it doesn’t raise us up high enough to change lightbulbs.

While dressing for the party, I put on a flannel shirt that I’ve been wearing as a sweater lately as a sort of throwback to my junior high years (and also because it’s super-comfy). Mandy saw it and joked that she should wear one too since it would be totally fitting for the occasion. Cut to 20 minutes later and we’re all ready to go – me in my flannel, Mandy in hers, and Leah in a striped button-down shirt and khaki overalls. It was the cutest, most ridiculous thing ever and I only wish we’d had power so we could have taken a better picture to show you. As it is, we barely found our way to the door (THANK YOU, iPHONE FLASHLIGHT!), and the lighting at the party was fairly dim. So we have what we have. Just know that it was ridiculous. Everybody was so excited to meet BabyBug, and she did pretty well and didn’t really get overwhelmed like she did at Thanksgiving, although eventually I took her into another room so she could sleep.

When we got back to the house, there was still no power. We had fun (or not) stumbling around the house using battery-powered tea-lights to light our way. It was a challenging experience – Leah has more than one electricity-powered medical device as well as refrigerated meds and breast milk, and we had to take a ride to Gran’s house to do her breathing treatment. We did learn earlier in the day that we need to be on file with the power company as a family with a child requiring electricity for medical devices. Not only do they provide a small discount, but more importantly, if there is a planned power outage they are required to notify us ahead of time so that we can make sure we have a backup plan for Leah’s treatment. This is critical since both her feeds and her breathing treatment require power. It is sort of troubling to learn that being on record with them doesn’t prevent them from turning off the power – it just requires notice for planned outages. What do families do when a household member is on a home ventilator and the power goes out??

In case you were wondering, our power returned after about 32 hours. A few hours into it, Uncle Ralph took our breast milk supply to Mandy’s aunt’s house for safekeeping. He also bought two large bags of ice to put in the refrigerator (like an ice box!) and that allowed us to save the cold foods as well. Yay. We pulled through the power outage without any major catastrophes, but it was a good reminder that we need to be better prepared for a real disaster. Anyone know anything about affordable backup generators? If there was a real emergency we wouldn’t be able to just drive somewhere to plug in the pump and breathing treatment – and ice would be a hot commodity (a cold commodity, really). What would we do? Leah needs to eat, and she needs to breathe, and she needs her medication.

Yesterday Leah had her first outpatient speech therapy visit. She tried a bit to drink water through a slow-flow nipple, but she continues to lack coordination and needs to work on that tongue thrust! We got about maybe 1/3 of the way through the appointment when we started hearing this little gurgling creaking sound, and upon investigation we realized her g-tube was out of place. That makes five times since her release from the hospital. This time, however, was different – all of the other times, the balloon came out intact, suggesting either that the balloon was inadequately filled or that the tubing caught on something and pulled it out. This time, the balloon failed and caused the tube to come out. We’re not sure what happened – probably a faulty balloon. I tried to put it back in, but it gave me more resistance than I was willing to fight against so I called the nurse practitioner on the surgical team and she said to bring her over and she’d re-place it. It turns out Leah’s tract is at a bit of an angle, which I didn’t realize since I’ve not been the one to deal with her escaped tube the past few times. Now I know! The speech therapist was very sweet and walked over to the other building with me so I could carry the baby since I didn’t want to strap her into the stroller with a dislodged g-tube.

So. Two appointments yesterday. Today Leah met with her surgeon and her new gastroenterologist, and it looks like we will be returning to consolidated feeds (over an hour), at least during the day. Her feed was raised as well – she has lost a little bit of weight since her last weigh-in. She’s 11 lbs, 4 oz. Gain gain gain, little one!

Tomorrow we have baby’s RSV shot and flu booster. On Thursday Leah has a whopping THREE specialist appointments. Friday are her Regional Center assessments. This kid is POPULAR!

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We don’t always dress like lumberjacks, but when we do, we make sure the kid matches.

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“Yeah, I’m cool.”

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Selfies!!!

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Mama and BabyBug! We just need baseball caps!

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Beautiful eyelashes.

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“Mommy, please just let me eat your hand. That’s all I want. You have another one. Just let this one be mine.”

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BabyBug with her Tubie Friend.

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Leah with her best friends at the moment. (Don’t worry – Jingle Bug is just outside the frame.)

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Who’s a cool cat?

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Please never let her make this face when she’s asking for a cookie or a pony. I’m not sure I can stand up to this face.

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“WHEW! It’s hot in this monkey suit!”

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Sleeping in the car.

Party!

Last night was Leah’s first Shabbat at home! We celebrated at home with a nice dinner with Aunti Staci, and then we had a nice dinner with Aunti Staci, and then we cooked a nice side-dish for dinner with Aunti Staci. Really though – Staci didn’t arrive until almost 7:30PM with the supplies for latkes and her magical butternut squash dish, so we had the chicken and veggies first, then had latkes an hour later, and then Staci and I made the magical squash. (Seriously, people. Brown sugar, butter, pecans… have I mentioned how grateful I am to be eating again?) Thanks for second dinner, Aunti Staci!

Today was the annual holiday party at Ronald McDonald House (sponsored by Harvey Levin and others), and we joined in on the fun! It was a really cute event. They had activities over at the Lyman house in the morning, and then a wonderful lunch at the Fountain house with events hosted by Nadji Jeter, performances by Ryan Ochoa and his brothers and others, and a raffle (some lucky kid won a Sony Playstation and a couple of others won bikes!). After all the performances, Santa showed up to take pictures and hand out toys. These guys don’t mess around – he rode in on a fire engine. I’m not a big Santa person and the place was starting to get a little hectic what with the big jolly celebrity, so we hightailed it out of there before the noise got to a deafening roar. We had a great time – got to catch up with some families and also met a few new families and exchanged stories about our experiences. One family who was sitting at our table turned out to have been in the same NICU pod as Leah this past July! Small world. Right before we left, the RMH folks gave Leah a Glow Seahorse (like a GloWorm except it’s a seahorse!). Thanks, RMH! That little guy kept her company for a good while this evening. She loves it.

We wound up not staying at Ronald McDonald House this weekend/next week after all. Leah has 7 appointments in 4 days, but now that we’re home, Mandy really felt we should just suck it up and do the drive every day so that we wouldn’t have to uproot ourselves again. We’d also lose almost a week of unpacking time. We have so much to get done. So we shall drive. And drive. And drive.

Funny moment of the evening: We were at the dinner table eating our turkey and veggies, and our cat Lobo was trying to get onto the table to make sure we knew he was there. Mandy yelled, “Lobo, DOWN!” and Leah piped up with an emphatic “AYE!” from across the room. As always, Buggy has perfect timing.

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“Look at my cute dress!”

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Staring at Uncle Ralph

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“Uncle Ralph, you silly!”

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“CRYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYY!”

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“Just kidding. I’m happy!”

 

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“Moo?”

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Bundled up in layers to stay warm

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We love our new glowing seahorse! Thank you, Ronald McDonald House!

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This is what Leah looked like when we pulled her out of the car this afternoon. What is wrong with this picture?

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Knocked out in the car.

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This is how we fell asleep. OMNOMNOM.

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“Mama, I had a dream I was eating my seatbelt!”

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“I’m silly, like woooooo, silly!”

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BabyBug needs to learn to keep her tongue in its house!

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“Don’t stick my tongue out, Mama? Oh, you mean like THIS? Don’t do THIS?”

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Our little ham.

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.

HOME SWEET HOME!

Well, it’s Leah’s 215th day as well as her 7-month birthday, and we are home. Like, HOME, home. Not much to report at present. The move was exhausting, and BabyPie is trying to figure out what the heck is going on. The cats are making every effort to ignore the baby situation and pretend that we arrived home without a strange-looking bald kitten. They paid attention to her for about 30 seconds (yes, caught on video), but overall really seem to have no interest. We’ll see how long that lasts. Probably until they figure out that she comes attached to milk.

I’ll post a longer update tomorrow, with pictures. I have to go now because I see furry ears and yellow eyeballs behind my screen demanding my attention.

What do we want? Bolus feeds! When do we want them? Now!

WHEW. This little bug has kept us BUSY this past week! Wow. The total g-tube pullout tally is at 4 right now. Last night and this afternoon were the 3rd and 4th. Poor bunny. Her stoma site is so red. Bolus feeds cannot come soon enough. The faster we get her back to regular feeding (where we give the feed over a short period of time and then remove the extension for several hours), the better it will be for her little tummy. And the methadone dosage is dwindling, as is her patience for pretty much everything as a result. Such a crankpot! Mommy Mandy took her out in the stroller to roam the halls of RMH after midnight tonight because that was the only way to get her to sleep. We are bracing ourselves for tomorrow; both the dose AND the frequency are being reduced. I think that’s a pretty big leap in one day. Waiting for baby’s doc to let me know whether we can add one more day in to soften the blow.

A little logistical update: We head home on Sunday, but will be back at RMH for a few days the week after next because BabyBug has six appointments over a four-day period. It will make everybody a lot happier if we don’t have to deal with that from home. Anyway, it will be nice to see everybody again after having been gone for… six days. After that, hopefully we won’t have to come back for a long time. I will be sure to post lots of pictures when we get home. The lighting in the room at RMH is kinda lousy so I haven’t gotten very many good pictures, but you can bet the Mamarazzi will be going wild once that little girl gets home. Watch out, kitties! Here comes BabyBug!

And finally, a philosophical musing.

I posted on one of the TEF/EA boards asking whether other folks had any tips for us about helping Leah get through this horrible withdrawal period. One of the moms there contacted me because she also lives in LA and her child has been a regular across the street at CHLA since birth. I had a ton of questions and she sent me to her Facebook page, where I spent a good chunk of time revisiting everything they have been through over her child’s several years dealing with these issues. I read something in one of her comments that really resonated with me. After her son came home from the hospital as a baby, a lot of people started asking, “So he’s okay now, right?” It was, of course, an expression of relief and shared joy at his homecoming after a long and difficult journey. I totally get it. But it’s a tough question with no good answer. When I read it, I felt a little stab in my gut. The simple truth is that no, many kids with EA are never quite “okay,” if by “okay” you mean “healthy,” “all better,” “out of the woods,” etc. That makes it a little bittersweet to get out of the hospital. We are THRILLLLLLLED to take Leah home and get to the business of living our new life as a family in our family home and not in a hospital room. But “okay” is going to have to be a relative term in our house. In a way it already is; I have multiple chronic illnesses and the simple question, “How are you?” always leaves me at a loss for an honest answer that doesn’t make people regret they asked. Like… I had my surgery, so I’m okay, now, right? Well, no – it’s more complicated than that. I usually just stick with, “I’ve been better, but I’ve been worse.”

We’ll have to navigate that question in the same terms for Leah – still more so, because even if she takes off running and never looks back when it comes to feeding, she still has Down Syndrome. She is still going to have to deal with medical and developmental problems for the rest of her life. She’ll still be at risk of hospitalization every time she catches a cold or flu. We’ll still have the possibility of a future heart surgery looming over our heads. And then there’s the whole question of her future once she’s an adult. So is she okay now?

But of course Mandy (always more optimistic than I am) pointed out that we want her to have as normal a life as possible and not have people always focus on her health problems and disabilities or just see her as a sick child. And of course that’s totally true – we want her to live life to the fullest, as independently and mainstreamed as possible, and not have her health problems always be front and center. It is easy enough for me to be pessimistic and say that her life is going to be a series of doctor appointments, but that would be a pretty negative way of looking at things. She’s going to have a great life and have lots of fun with the tons of people who love her and care about her and want to see her thrive. And if some of those people happen to be doctors and nurses and therapists, so be it. The more the merrier. In that sense, I guess she’s okay.

Is it naptime yet?

Let’s see… where did we leave off? Ah, yes. BabyBug had just gone to the ER and had emergency oxygen delivered because there was no order. And then poop. Ha.

So. On Saturday we had a few more visitors, including Faith and Matt as well as our friend Jennie, who has been living in Boston for almost four years and re-relocated to Los Angeles over the weekend. There were two outside groups at RMH on Saturday – one preparing a meal for the families (they call these “meals of love,” formerly known as “happy meals”), and one setting up a little village as part of the house’s Christmas decorations. I’m not a big fan of Christmas decorations as a rule, but the little village is pretty cool – and little cartoon characters make cameos throughout the display. I’ve posted pictures below.

On Sunday, my dad visited too, as well as our cousins. Sunday was another day of excitement. In the morning, my dad came to visit and we all went over to the other house for a “meal of love” breakfast, and just as we were getting ready to go back to the house where we’re staying… Madame Butterball’s g-tube fell out. AGAIN. I raced back to our room and got supplies ready and we reinserted the tube. Instead of taking her to the ER, we called the peds unit and asked how we could get ahold of the surgical residents so that we could avoid a trip to the ER. At the same time I mentioned the whole oxygen mixup. The charge nurse said she would follow up, and shortly thereafter we got a call from a doctor who just went over what happened and told us what to watch for and said we didn’t need to bring her to the ER. YAY. A few hours later… the medical supply company attempted to deliver Leah’s oxygen. All of it. To Ronald McDonald House. Whoops. We got enough to last us until we head home, and we’ll have to call and request the proper tank sizes once we get there. We have the medium-sized tank here as a stationary tank and there’s no way we could move it – never mind the large one.

Whew. So that was Sunday.

Monday was my very first day alone with BabyBug; until now it’s been the three of us, since Leah got out just before Thanksgiving, but it was time for Mandy to go back to work. Leah and Mama managed to get through the day just fine, aside from a little bit of tardiness to Leah’s doctor appointment (the shuttle company was short a driver yesterday). The general consensus regarding Leah’s g-tube is that it is probably coming out more frequently because she’s on continuous feeds. The RNP also increased the amount of water in the balloon. We have to keep her on continuous feeds until the methadone wean is completed to avoid more projectile vomiting episodes, but that’s just another couple of weeks and then we can work on getting her to consolidated feeds. And then hopefully the g-tube will stay put.

Other than the appointment, the day was pretty uneventful – no g-tube outages, just a bunch of crankpot antics. I was still exhausted from yesterday when we hit last night. I think I was up until about 2AM with Leah last night because she has been suuuuuuper fussy these past few days. I think it’s a combination of teething (normal baby thing) and withdrawal from methadone (not normal baby thing). Poor bunny.

Today Gran drove Leah and me to an appointment (mine, not hers) and then Leah got to have her first grocery shopping experience so that Gran and Mama could grab a bite to eat. Leah LOVES the stroller so it was perfect – the store is huge so we just walked around and around with her so she could drift off to sleep. Yay for naps! Leah remains cranky today – her dose just went down again and she is PISSED.

And that’s our story for the past few days: Wee fussbudget. We’ll take advice – for teething or for withdrawal. Thanks in advance!

For those of you who have been asking… we will go home on Sunday. We’ll be back plenty – the kid has 10 appointments in the next 30 days and that will go up – but it will be nice to be at HOME home. I’m sure Leah will love her kitty brothers. I’m not sure they will feel the same.

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A collage from Aunti Staci.

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A gift from the nice people who brought lunch for the families on Saturday.

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Buggy the Vampire Slayer. Are we precious or are we precious?

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“Grrrrr! Argh!”

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Buggy and Jennie

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More Buggy and Jennie

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Buggy and Mommy

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A mystery-animal lovey that Leah received as a gift. I call him Ponysaurus. She adores him!

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Yup. Adores him.

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“Look, everyone! I haz a pretty blankie from Binkeez For Comfort.”

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Pretty in her pink Binkeez.

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“OMG SNOWMAN!”

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“OM NOM NOM SNOWMAN!”

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“I win the snowman!” Mommy Mandy made him. He jingles! I call him the Sno-Worm because he looks kind of like a Glo-Worm.

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Chanukah display

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The village

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Looney Toons

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The Mickey Mouse House with caroling Looney Toons

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More village

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Sesame Street

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The Mickey Mouse House

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The whole village

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Nomming on the paci.

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This will be so much less cute in a couple of years.

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Tummy time!

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Comfy with our Binkeez.

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Cute with our Binkeez.

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Pissy with our Binkeez.

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“Grrrrr, Mama! I’m a tough baby!”

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Hi Mommy!

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“I think I’d like to nom on a finger.”

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“I want your thumb, please.”

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“WANT MOMMYTHUMB NOW! RAWR!”

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Believe it or not, this outfit (cute terry dress and black leg warmers) is totally practical. We put this on her after the g-tube incident so that nothing would be pressing on her belly. She was thoroughly exhausted after the whole ordeal.

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They’re so cute when they sleep.

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Mama caught someone smiling!

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“Four score and seven years ago…”

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“Mama, why you callin’ me Abe?”

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Cousins! a.k.a. our diaper heroes!

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BabyBug draped over Mommy’s shoulder

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“RAWR! I GET YOU!”

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BabyPie’s new friend Haley sponsored her for a cape from Tiny Superheroes. She had lots of fun being SuperBug. Flying Baby!

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SuperBaby collage!

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Leah’s furry sidekick, Morgan, who stole Leah’s Chanukah bib (which Great-Grandma Marilyn brought to Thanksgiving) because she needs it to save the world. If you trust what Aunti Staci says, at least.

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Sweet little gift Leah received from Joyful Givings – a classic Eeyore and a cute headband!

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HI GRAN!!!

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We love car rides!

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We love sticking our tongue out at Mama.

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Wheeeeeee! Diapee change!