These are days you’ll remember

There isn’t a TON to update, although I do have some new pictures to share once I finish up some writing projects. But I had to share this. Somebody posted on one of the EA/TEF awareness boards about the song “Wonder” by Natalie Merchant, and how it really resonated with her. I never paid much attention to the lyrics as a teenager, or maybe just really didn’t get the song. But I get it now, and it inspired me to make this little montage for Esophageal Atresia / Tracheoesophageal Fistula Awareness Month. I hope you enjoy it.

Winter blues

The winter seems to be flying by before we get a chance to stop and catch our breaths.

November was basically the month of “more.” About halfway through the month, Leah had her first little breakthrough in drawing a connection between a word and a sign. She was constantly wanting to stand, and we got her to the point where she would sign “more” . Then we transitioned that sign into eating time, so that she would sign “more” when she wanted more food as well. So far she is doing it pretty consistently, although she has not picked up any additional signs – unless you count the reverse of the “more” sign, which is her way of telling us to “get that out of my face.” :-)

Both November and December have also been months fraught with rashes and winter illness. I am so grateful that Leah’s heart was repaired in October and that she is still getting the RSV shot this winter – I just know that she would be in the hospital right now without these two supports. She has been sick for the past three weeks or so, and just can’t seem to kick the stuffy nose and cough. She gets better, and then she gets worse, and then better, and then worse. She generally doesn’t have a fever, but at times her temperature has reached 102 degrees. At night we have to get up more frequently to vent her stomach – I think by breathing through her mouth she is taking in more air, and also whatever postnasal drip she has is clogging her esophagus. Either way, it’s not pretty. We have taken her to the pediatrician twice, and tomorrow we are taking her to the ENT to see if she has a sinus infection. Mama and Mommy are both sick right now too – Mama had laryngitis for almost a week! Leah’s rash is a whole other story. We think it might be either from teething or from something she is eating by mouth. It comes and goes, and shows up on her chin, near her eyes, on her nose and on her forehead. It’s the weirdest thing!

December has already mostly passed, and it hasn’t exactly been kind to us, even beyond all the germs raging through the house. My 95-year-old grandpa passed away on the first night of Chanukah, which cast a cloud over the entire holiday. My sister and I flew back east; he lived in California, but was buried on the east coast. I had laryngitis for most of the time I was there, and just as I started getting better over the past few days, I had a little accident at home. A thing flew off a shelf and my face broke its fall. I had a nice visit with the emergency room docs, and I think my nose is broken but won’t know for sure until I follow up with ENT on Friday.

Other newsworthy Leah events lately: Ms. Bug has cut a tooth! It’s either a molar or a bicuspid on the upper right side. She also managed to pull herself up successfully, one time, from sitting to standing in her crib. AND she scooted herself in a circle while sitting! She is also waving to people! And to cats! Lots of fun milestones.

So that’s all for now! Have some pictures, and even some video!

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“This? Again?”

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Those piggietails are still my very favorite.

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“You were supposed to vote, people!”

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A special moment at our friends’ baby shower.

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Too Cool For School, But Just Cool Enough For OT, PT, Speech Therapy and Infant Stim.

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DollyBug

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Mama’s BFF

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Swallow study

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Somehow this picture makes me want to call her a little ragamuffin.

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Making a new friend!

Our first sign:
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MORE!

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Play date!

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She put something in her mouth and nommed on it! Something EDIBLE!

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Conducting a spoon orchestra

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Deep thoughts by Bug.

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Great-grandma!

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Mama and Bug. That chair was mine when I was a baby!

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Leah in Mama’s chair!

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Trouble, with a capital T.

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A one-baby band.

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She looks so grown-up here.

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She wasn’t really this scared, but I love the way the photo came out.

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That’s more like it.

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Family portrait!

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Can’t handle the cute.

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Seriously. Babytoes.

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Someone was not impressed.

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Very not impressed.

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“More pictures? Okay. Take a picture of this face!”

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Love.

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Love and sillies.

October was a little more exciting.

So here’s how October went…

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We have taken to bringing Leah to our bed when she wakes up in the morning so we can play and be silly before we all have to get up. We take lots of silly, silly selfies and sing lots of silly songs.

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We also stand on our mommies.

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She has some shmutz on her bib and some sass on her face.

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Look. We don’t get out much. So when Auntie Jo brought home a puzzle she found on clearance at Target, we were like, “Hey, cool, something to do all together after the baby goes to bed!” So we did it. And then we did another one. And another one. They were only taking us a couple of days, and I was just thinking we needed more of a challenge when I found a coupon code for a custom puzzle. I may or may not have put together a collage of baby pictures, and there is a distinct possibility that I thought it would be a good idea to order a 2000-piece puzzle. I don’t remember exactly what day we started, but the picture above was taken October 7, by which point we had made some significant progress. We did not finish in a couple of days. Auntie Jo and Mommy Mandy were relentless in their mockery of Mama Lisa’s brilliant 2000-piece idea. I’m just glad we finished in October.

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Of course, we missed a couple of days on account of Leah getting her heart all fixed up. Here she is, waiting patiently for the OR to be ready.

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Babyfingers

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X marks the pulse. Also, toes.

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Naptime is over! Prepping for her procedure with a few push-ups.

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Post-procedure Mommyfingers.

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“Um, Mama? Help a baby out?”

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Morning! Time to go home!

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Delighted to be home, but way too distracted by the kitty to bother with a smile.

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“Mama. I NEED him.”

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Silly billy baby.

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I’d say we were doing pretty well by October 10.

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Can you find a baby?

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Petting her kitty-tails book, which she got from the Butterfly Fund. Hopefully it will keep her little paws off of the real kitty tails.

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Yep! This happened! Our friends Brian and Lisa came down to LA for a wedding, so they visited us and met Ms. Bug while they were in the area!

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LeahBug was a wonderful hostess, and even made sure they were happy with the photography arrangements. “How’s it going back there, guys?”

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This is our “I will do push-ups for an hour while I’m supposed to be going to sleep, but don’t tell my PT ’cause I’ll just tell her you’re making it up” face.

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“I NEED TO SQUEEZE HIM.” Why do I have the feeling this cat is going to be a major motivating factor in my child’s mobility development?

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Foot.

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October 15. Coming along!

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Mommy chin.

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Mommy chin.

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Mommy chin. “Mama, you’re getting this, right?”

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What do you say, folks? Is she teething, or is she teething?

A couple of months ago, a woman (AlisaMarie) posted on one of the special needs Facebook groups to share a project that she and her husband would be working on. They are planning to do a road trip across the United States and photograph families along the way who have kids with special needs. They will provide the families with (gorgeous) digital photos, and also use the photos to create a coffee table photo book telling the stories of the many children they meet along the way. They wanted to start with a few families before launching their KickStarter, and since they are based in Southern California for now, they were kind enough to include Leah in their pre-launch photo group. We love the pictures they took, and are keeping fingers crossed that they are able to fund their project. It sounds amazing. If you would like to help (or if you would like to participate as a family being photographed), please check out their web page, Project: A Road Less Traveled, as well as their Kickstarter campaign. The different levels of pledges include various benefits, including t-shirts and copies of the finished book.

Here are some of the photos that AlisaMarie took.

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A little Etsy-type shop on Instagram offered to send LeahBug this adorable shirt in exchange for a photo they could share of her wearing it. AlisaMarie was kind enough to snap this on my camera so I could send it to them. This picture is exactly what I envisioned in my head, and she got it in one shot. I’m impressed. :-)

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October also marked Leah’s mommies’ 12-year anniversary together. We decided to squish her in celebration. Squiiiiiiiiiish. What did Mama and Mommy do on their anniversary? We went out for tamales at our traditional anniversary/celebration restaurant, and then went down to the 3rd St. Promenade to walk around and get dessert. Somehow we magically found ourselves in front of the Old Navy baby clothing clearance rack. I can’t imagine how that happened.

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This face.

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October 19. “But look how much progress we’re making!” “You said that last time!”

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Grandpa Billy Goat chillin’ with the bug

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“NEED. TO. SQUEEZE. KITTY.”

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Leah has been making slow but definite progress in her oral feeding. She is still only getting small amounts therapeutically, but last month we started feeding her Gerber Puff crumbs by mouth, and now she is able to eat several whole puffs in a row!

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“Well this is new.”

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October 22. Getting a little less creepy now that some of the Bugs have faces.

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SILLY SELFIEEEEES!

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What is October without a visit to a pumpkin patch? Initially we couldn’t find one nearby that was open and unlikely to be packed with people, so we went to an elementary school “harvest festival” instead. Still had some cute photo ops. :-)

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“What is it?”

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“Okay. I accept it.”

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Family photo!

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October 25. “We’re so close!” “You’ve been saying that for weeks!”

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We decided to do our own little photo shoot with the pumpkins we bought from the harvest festival. We felt a little guilty having sat by the pumpkins for so long taking pictures, so we kinda had to buy a few. Of course I had to put LeahBug in the dress we bought for her on our anniversary.

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“Mommy. Please. This is MY photo.”

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“Mama, if you don’t get out of my photo I will eat your hand! Actually, I’ll eat your hand anyway!”

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“Mama, am I doing the duck-face right?”

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“Gran, I don’t even want to hear it. Why does everyone want to be in my picture?”

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“KITTTTYYYYYY”

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“Kitty, YOU can be in my picture!” Yeah. Someone crashed our photo shoot.

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Cheeeeeeeeeese!

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October 27. DONE! YES! FINALLY! We have now painted over it with puzzle glue and are trying to find a cheap way to frame it and put it on the wall without destroying it.

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Toes.

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A few days before Halloween, Aunti Staci and Mama and Baby went to the real pumpkin patch! They had a petting zoo, and pumpkins, and PONIES.

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Leah tries to pet the goat with one finger. That’s her big thing right now – she likes to do “ET, phone home.”

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Bunnies! Bunnies, it must be bunnies!

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“Oh hi, Mr. Goat. I like my toes too.”

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Hey, remember that time when we went to the pumpkin patch and a herd of goats tried to eat the baby?

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Aunti Staci decided Mama wasn’t doing a good enough job of fending them off, so we traded places. We think they smelled the food from her g-tube.

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Chickies!

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“Mama! It’s a pony!”

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“I waaaaant… that one!”

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Cutest punkin’ in the patch.

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Sillie selfie to send to Mommy!

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Ms. Bug was a “Teeny Tiny Honorary Nurse Practitioner” for Halloween. When I get to November I will share a photo of her with her Grown-Up Actual Nurse Practitioner.

So that’s October!

September, in photos

I posted my updates in September – you might remember that Leah was in the hospital for five days with an unidentified virus and that is why the doctors decided she needed her heart repair ASAP. You can refresh your memory here if you like.

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Usually Leah looks like a little Cabbage Patch Kid, but for some reason this picture makes me think of Rainbow Brite.

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Theeere’s the Cabbage Patch Kid.

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Friends!

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I couldn’t pick just one.

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Um. I couldn’t pick just two.

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This is a sleepy toddler.

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We get that “windblown” look when we sit in front of the air conditioner. Or, you know, that “I just walked head first into the Santa Anas” look.

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Auntie Kimmie!

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Chillin’ with friends!

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How are we this happy to be back in baby jail???

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This is how Mama would look.

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But somehow we are just delighted.

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I know I already posted this but I love it so much I had to post it again.

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This too.

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Pleased to be going home!

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“Hmmm. Let me think.”

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Her two mommies are lucky to be loved by her!

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Cutie pie on two feet. In skinny jeans.

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Our first Rosh Hashanah services! She had so much fun at the family service!

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Pondering deep thoughts, I’m sure. Or deciding whether or not to eat the shofar.

August, in pictures.

I already blogged our August updates (here’s a little refresher but here are my favorite pictures. I’m trying so hard to catch up to the end of the year before, well, the end of the year. So I’m going to save current updates for after the photoblasts!

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A bunch of dollies.

These next two pictures just bust me up.

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Leah’s Cool Aunti Erin was holding her but not looking at her.

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This was unacceptable.

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Badass BabyBug.

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Not-so-badass BabyBug.

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Like silly mama, like silly bubba. We spend way too much time taking ridiculous selfies.

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“Mama. I need your hand.”

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“No, you don’t understand. I NEEEEEED it.”

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“I had your hand, but I eated it.”

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I know it’s a little blurry, but I just can’t deal with those cheekies and I need help coping with them.

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Okay, that was our cat Lobo helping me cope with the cheekies.

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These are a few of my favorite toes!

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More cheekies with which I can’t deal.

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Leah went to her buddy Ari’s first birthday party!

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LeahBug and Dani

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The South Bay Triplets

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South Bay Triplet toesies.

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We went to our dear friends’ wedding in August, and Ms. LeahBug was a flower baby. Unfortunately, she was a bit wilted during the ceremony. It was pretty hot out, and also it was only a couple of days later that she had a cold and a stoma infection. So I don’t think she was feeling very well. :-( It was a gorgeous ceremony, though! How awesome is that dress?

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We did manage to get one little half-smile out of her.

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At the doctor’s office, on the other hand, she was allllll smiles. Even though she was sick.

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Bubba didn’t feel very well.

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…aaaand guess where we wound up later that week? I posted already about her GJ coming out. They also thought she might have a c-diff infection but thankfully her symptoms turned out to be side effects from her antibiotics. Why does she look so happy? This child.

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SO delighted to be back in PT. Even now, all this kid wants to do is stand. Her desire to stand is so strong that it has actually motivated her to learn her first sign. I’ll try to capture this on video!

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“Mush, mamas! Mush!”

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Our first drive-through carwash. Concerned Baby is concerned.

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Whee! This is new!

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Tiny curls. Tiny tiny curls.

It’s November! What?

So hey – it turns out toddlers don’t sleep as often as babies do. You know – in case you’re wondering why I haven’t updated the blog as frequently in recent months. :-) I’ll get some new pics uploaded soon – but in the mean time, someone wants to make sure you voted today.

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A belated update

Whew! I seem to have updated every venue but the blog! Here’s the update we sent out to the GoFundMe site:

We are delighted to report that Leah had her heart repair on Wednesday, October 8 and came home the following day.

Once in the cath lab, Leah’s doctors discovered that the VSD was larger than initially anticipated. There was a great deal of blood flow through the hole in Leah’s heart, and she was in heart failure. They also found that they had a little Goldilocks on their hands – the device they had intended to use turned out to be too big, and the backup device they had ordered was too small! Thankfully, the third device they tried was juuuuust right. They ultimately used a “plug” intended for VSDs in a different part of the heart.

There is still some leakage around the plug, but already her enlarged heart appears to be a more normal size, and the doctor feels that the leakage has a good chance of closing up as the tissue in her heart grows around the plug.

One major complication that we are watching out for is the potential for blood clots, since they use major arteries for the catheterization. Leah’s right foot was quite cold in the hospital, indicating diminished circulation. We brought her back up to the doctor on Friday because we felt that while it had improved in the hospital, it was not improving at home, and had gotten a little colder than it was when we left the hospital. They did an ultrasound and thankfully it looks like there is no clotting right now, but they have put Leah on low-dose aspirin and will be watching her closely – we have another visit on Monday. We are very grateful that her doctors are attentive and responsive to our concerns.

Thank you all for your thoughts and prayers during this nerve-wracking week, and always!!

Here goes!

Today Leah’s doctors will try to fix her VSD using a method that is not typically used for this type of defect. They will use the blood vessels in her leg to send a catheter up to her heart and attempt to close the VSD with a device that is typically only used for different types of holes in the heart. There is a very real possibility this might not work, but the doctors want to try to see if they can help Leah avoid open-heart surgery. We are grateful for any and all positive thoughts and prayers today. Thank you!

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How To Put a Toddler to Bed in 100 Easy Steps: Special Needs Edition.

There’s an article circulating the Internets right now called “How To Put a Toddler to Bed in 100 Easy Steps.” I first read it during one of the nights when Leah was particularly difficult to put to bed, and remember thinking that there really ought to be a “Non-verbal toddler with special needs” edition because oh man, that list is JUST THE BEGINNING. After another fun evening putting the BabyBug to bed, I’m thinking Leah’s 100 easy steps would go a little something like this:

1. Move pumps and monitors into bedroom.
2. Note look of concern and suspicion on toddler’s face.
3. Get together nighttime meds and feed.
4. Scoop toddler up and place on changing table.
5. Straighten out pulse oximeter sensor. Obtain nasal cannula.
6. Ruin at least three Tegaderms attempting to place nasal cannula.
7. Achieve epic cannula victory only to watch tape slide off on account of toddler’s tears.
8. Dry toddler’s face, retape cannula, turn on oxygen, and connect pulse oximeter sensor to machine.
9. Vent toddler’s stomach.
10. Nearly spill stomach contents when toddler kicks syringe.
11. Administer nighttime meds, clean g-tube site and run feeding pump.
12. Extract toes from toddler’s mouth and retape pulse oximeter sensor. Put a sock over it.
13. Change diaper and wash hands with wipes.
14. Peel toddler’s fingers off of g-tube button.
15. Obtain pajamas and trip over pulse oximeter cord in the process.
16. Breathe sigh of relief that it wasn’t the feed bag tube.
17. Wonder how you didn’t trip over feed bag tube.
18. Extract feed bag tube from toddler’s mouth.
19. Peel toddler’s fingers off of g-tube button.
20. Put pajamas on toddler.
21. Spend five minutes snapping pajamas and pulling wires through various holes.
22. Retape nasal cannula.
23. Remind toddler that feed bag tube is not licorice lace.
24. Observe toddler get very angry, then very cranky, and then poop.
25. Change poopy diaper.
26. Resnap pajamas one-handed.
27. Set toddler in crib using only your elbows and go wash poop off of your hands.
28. Return and retape nasal cannula.
29. Fix pajamas and tubes. Replace sock over pulse oximeter sensor.
30. Begin nebulizer treatment.
31. Remind toddler that nebulizer mask is not a lollipop.
32. Remind toddler that nebulizer mask is not a chew toy.
33. Realize the only way this will work is to place toddler on your chest and hold nebulizer against her.
34. Try to avoid inhaling breathing treatment yourself.
35. Feel lightheaded and wonder if it’s the medicine or the lack of oxygen from holding your breath.
36. Remind toddler that nebulizer mask is not a jai alai basket.
37. Remind self that toddler is nonverbal.
38. Continue to think of things that a nebulizer mask is not.
39. Read a book to toddler.
40. Notice toddler becoming drowsy.
41. Notice drowsy toddler becoming cranky.
42. Change Lasix diaper.
43. Read another book to toddler.
44. Notice toddler becoming drowsy.
45. Place toddler in crib.
46. Observe instant wail.
47. Pick toddler up.
48. Appreciate immediate silence.
49. Begin to place toddler in crib.
50. Observe instant wail.
51. Pick toddler up.
52. Appreciate immediate silence.
53. Pretend to lay toddler down in crib several times to achieve siren effect.
54. Rock toddler to sleep on shoulder.
55. Place sleeping toddler in crib.
56. Observe instant wail.
57. Rock toddler to sleep on shoulder.
58. Place toddler in crib.
59. Realize that the cannula has flipped out of toddler’s nose, and adjust it.
60. Hold your breath as toddler whines.
61. Breathe sigh of relief as toddler falls back asleep.
62. Leave room and observe toddler on monitor.
63. Begin doing something entertaining.
64. Hear toddler gagging and retching on monitor.
65. Vent toddler.
66. Spill stomach contents as sleeping toddler kicks syringe.
67. Obtain new pajamas.
68. Trip over at least 2 cords in the process.
69. Change Lasix diaper.
70. Dress toddler in new pajamas.
71. Spend five minutes snapping pajamas and pulling wires through various holes.
72. Look up and observe toddler staring at you.
73. Brace yourself for the instant wail.
74. Pat wailing toddler until noise subsides.
75. Observe wide-awake toddler.
76. Offer rattling toy.
77. Watch rattling toy fly across crib.
78. Offer glowing musical toy.
79. Express relief that toddler is easily distracted by things that glow.
80. Tiptoe out of room and watch toddler on monitor.
81. Breathe sigh of relief that toddler appears to be entertaining self, at least.
82. Begin doing something entertaining.
83. Get lost in concentration.
84. Become startled by loud beeping.
85. Remember that toddler is easily distracted by things that glow.
86. Refasten pulse oximeter and replace sock.
87. Tiptoe out of room and watch toddler fall asleep on monitor.
88. Go to sleep.
89. Become awakened 15 minutes later by whining.
90. Extract toddler from tangle of wires and change Lasix diaper.
91. Rock toddler to sleep on shoulder, place in crib, return to sleep.
92. Wake up to fix beeping feed pump error. Go back to sleep.
93. Wake up to beeping feed pump error. Beg spouse to get this one.
94. Wake up to fix beeping feed pump error. Return and collapse onto bed.
95. Get up to fix beeping feed pump error that started midair as you fell back into bed.
96. Wonder why feed pump hates you and what you did to make it angry.
97. Go back to sleep.
98. Wake up to pulse oximeter alarm and retape nasal cannula.
99. Lovingly watch precious child sleep for several minutes before returning to bed. Sleep through the remainder of the night.
100. Pretend to be asleep for the first beep or whine of the morning so spouse will get up.

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[Edit: I realize I’ve left out a few steps, mostly involving Cat #1, who soars over the cat gate in Leah’s doorway and has to be let out at least three times during the course of this routine because he can’t get back out, and Cat #2, who uninstalls the cat gate entirely and has to be nudged out of the room like a soccer ball. So we’re basically playing Whack-a-Kitty through this whole routine.]

[Edit #2: And I’ve failed to include the multiple steps throughout the evening/morning that consist of these instructions: “Watch monitor. Make sure toddler is still breathing.”]

[Edit #3: I mean, basically you’d need another 100 easy steps for all the other stuff that didn’t make it into this list… and just wait ’til you see the “How To Prep For Your Toddler’s Day: Special Needs Edition” list. Just kidding. That would be a really long list, and not nearly as entertaining.]