Walk for Kids!

We are FINALLY getting a chance to participate in the LA Ronald McDonald House’s Walk For Kids. We really wanted to participate last year, but Leah was scheduled for her first diaphragmatic hernia repair, and we wound up AT the Ronald McDonald House instead of walking FOR it. This year, we’re doing it!

How can you help, you ask?

1) Donate! Each of us is hoping to raise $1,800. Lofty goals, I know, but it’s a worthy cause! You can donate toward Mama Lisa’s goal, toward Mommy Mandy’s goal, or toward Leah’s goal! Donations should be tax-deductible.

2) Join Team LeahBug! You can join in person by participating in the walk on April 12, or become a virtual team member if you’re not local. There is no registration fee, so come join Team LeahBug and set your own fundraising goal! Join here!

3) Share, share, share! The link to Team LeahBug’s fundraising page is http://rmhcsc.convio.net/site/TR/WalkforKids/LosAngelesRonaldMcDonaldHouse?team_id=3259&pg=team&fr_id=1095#.VPzIvPnF9yW, but we’ve registered and redirected teamleahbug.com to make it easier for everyone to remember and share.

We are excited for the chance to give back to the Ronald McDonald House, which was our home away from home for 7 months. Thank you for joining us in reaching our goals!

p.s. For those of you on the edge of your seats: We have no lab results yet for Leah’s allergy tests. The doc said a scratch test would be useless because her sensitive skin reacts just to the irritation of a scratch, regardless of the allergen.

Tomorrow, the moment of truth!

Tomorrow is the day for Leah’s allergy testing! We come face to face with her edible Kryptonite! My prediction is that while allergy to eggies will almost certainly turn out positive, pineapple may well come out negative. I suspect more and more that her big breakout last year was actually a response to the MMR shot, which she had ten days prior. I hope that means her body has built up the antibodies she needs to fight off the measles, as apparently IT’S A THING AGAIN. But yes – hopefully they will test for all of the usual suspects, and we will see what we need to avoid as Leah’s meal “repertoire” expands.

While we await more news, please enjoy this video. It makes me so happy.

Once Upon a December

It’s been a warm, weird winter so far. January was pretty uneventful, but we did have to take a late-night trip to the emergency room after we discovered that Leah’s g-tube was out and her stoma completely closed. It was a pretty miserable trip, but somehow we managed to land there on a night when Leah’s surgeon was in the OR at 1AM, so he came to check on us after his procedure and was able to get the stoma open again using some small torture devices called dilators. We are very grateful; the ER doctor was unable to get the stoma open himself, so had her surgeon not been there, Leah could have been looking at a new g-tube placement surgery.

January also saw the loss of one of our Ronald McDonald House family members. I don’t know if I have talked about this family on the blog, but I know I have shared their story on Facebook. When we arrived at RMH in 2013, there was a family there from Guam who had a son in the hospital for a pre-leukemia blood disorder. His older sister was a perfect match for him and was going to be his bone-marrow donor, but about mid-way through the summer, I was in the laundry room talking with his dad when the younger sister came in and said the older sister was being taken to the hospital by ambulance for an incessant nosebleed. She was diagnosed with the same condition, and her brother passed away shortly thereafter. Unfortunately, big sister passed away on New Year’s Day. She fought long and hard and had a successful bone marrow transplant, but she had an allergic reaction to shellfish, and that triggered graft-vs-host disease, which ultimately took her life. We are so sad for this family’s tremendous loss.

February has also brought terrible loss. When Leah was about five months old, I posted a blog entry about the odds of being Leah. We received a comment on that post from the mama of another little girl born just a few months after Leah with Down Syndrome, long-gap esophageal atresia and holes in her heart. Through Facebook, we got to know Audrey, the little sweetheart who shared so much with Leah. We became friends with Audrey’s mom, who soon started calling the girls soul sisters. I wish I could tell you that these girls will grow up together as pen pals and FaceTime buddies. Unfortunately, Audrey was hospitalized with a cold this winter and her condition took a downward spiral as she experienced multiple respiratory complications as a result of her EA/TEF. She was placed on ECMO for several weeks, but her struggle ended last Wednesday, February 18. Her memorial service was live-streamed this morning, and although it was absolutely heartbreaking, we were glad for the opportunity to support her parents and brothers in celebrating her life.

As requested, we have given Leah extra hugs and kisses and squeezes from all of our friends and family members who have also grown to love Audrey and who are also grieving her loss.

Leah is beginning to make more progress in the area of oral feeds. At present she is getting roughly 20-40% of her daily caloric intake by mouth. Feeding is a long and arduous process; it takes a good hour, at least, to get 70-100 calories in her. We got adventurous on Saturday morning and gave Leah half a scrambled egg – resulting in Ms. Bug’s very first ambulance visit. It appears our bug is allergic to eggs. She really enjoyed the scrambled eggs, which makes it even more of a bummer that she can’t have them – it’s hard to find high-calorie foods that are reasonably healthy and soft enough for Leah to swallow. Aunti Staci came over just as Leah was finishing up with breakfast, and within a few minutes, Staci pointed out that Leah had a bunch of hives on the back of her neck. It almost looked like she had been attacked by a mob of angry mosquitoes. She had them all over her back and her abdomen. She didn’t appear to be in distress, so I tried calling the advice nurse, but they told me it would be a 2 hour wait for someone to call me back. I then tried calling the pharmacy to find out what the proper dosage would be for Benadryl, but they put me on hold and after 15 minutes I gave up and looked it up online. We gave the Benadryl and then I called the advice nurse back and insisted that someone talk to me RIGHT NOW – Leah’s O2 saturation was fine and she seemed to be breathing well enough, but she was looking pale and her lips were starting to get a blue tinge around them. That seemed to improve with the Benadryl, and the nurse was just about to tell me to keep Leah on observation when Leah started trying to throw up. The nurse told us to just bring her in to the ER. Unfortunately the ER is quite a drive from our house and we didn’t want to risk getting stuck on the freeway with a child having what could develop into a dangerous allergic reaction – apparently the reaction can evolve from hives to anaphylactic shock. So we dialed 911, and Leah experienced her first ambulance ride, siren and all. At the hospital they gave her more Benadryl as well as a steroid, and sent us home after a few hours of observation (and another, less severe breakout). Today, one of her doctors gave us a prescription for an Epi-Pen. Hopefully we don’t have to use it.

So that’s our update. Oh – and Leah now has 2.5 teeth. The third one is just coming in.

BTW, in case you were wondering? Yes – Mama’s nose was in fact broken.

Below are photos for the month of December. I’ll try to post more photos soon so I can get caught up.

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In December, this was safe. No more. Leah is VERY into cat tails right now.

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December was a very musical month.

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We formed a one-baby band.

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We went to the doctor to see if we had a sinus infection.

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We mocked Aunti Staci’s sadness.

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We discovered the ridiculous adorable-ness of tights with Mary Janes printed on them. And oh – we now love to stand up. Or at least, we did in December. Now we are in a “twist and plunk” phase. When you stand Leah up in front of you, she twists and then plunks into your lap.

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Silly selfies!

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Sometimes a baby has to pout to get her way.

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Caption, please!

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We still haven’t quite figured out what caused this intermittent rash on Leah’s face.

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It didn’t seem to bother her, though!

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Little goofball.

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It’s hard to feel bad for this cat when he chooses to sit so close to the toddler.

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Um, excuse me? Ms. Bug? You’ve got a little shmutz… right there…

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Mama and Aunti Staci went to the east coast for Great-Grandpa’s burial.

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We couldn’t light Chanukah candles in the hotel room, but thankfully Mommy and Bug helped us out.

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Holiday party at BB&E (our cousins’ house)

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Hanging out with our little cousin. Leah almost tipped this kid over trying to pull herself to standing. That was her Thing in December – grab the hands and pull to stand. Now it’s grab the hands, pull to stand, twist and plunk.

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LadyBug Baby from Uncle Bry and Auntie Co!

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Uncle Bryan

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Uncle Bryan and why is there so much sun in the middle of December?

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We already know this baby is a gift…

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“Be NICE to the kitty. GENTLE with kitty.”

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“GENTLE.”

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“But I NEEEEEED to pull his tail!”

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“Forget this! I’m going for it!”

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Aaaand suddenly kitty tails are no longer safe.

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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