“Just ask Cinderella; the right pair of shoes can change your life!”
I once gave my fashionista sister a card that said that, but I think my Etta baby would agree. Girl is shoe OBSESSED.
While many parents battle toddlers to get shoes on and kept on, mine is constantly bringing me shoes, holding up her tiny foot, and demanding I put it on. Sometimes her shoes, sometimes mine. Today, she took the silver patent leather Birkenstocks right off my feet. And she’s not too concerned with matching shoes, either– one shoe, two different shoes, these are valid options.
I’m not kidding about the tiny feet, either. She’s 17 months old, and she wears size 2 shoes, or a 6-12 month size. We’ve hung out with other kids her age, and their feet are no joke, twice the size of hers. This means occasionally, shoes fall right off her feet. Just the other day, I had to go back out to some steps, where little Cinderetta had lost a silver slipper.
Wearing one red sparkle shoe, wielding a toothbrush, fleeing a very giggly speed-crawling Claire. Just a typical afternoon in the Bufflo home.
While I have images of my tiny person with a tiny backpack sitting at a tiny desk, the real story is that she’s starting at a developmental preschool at the same place she currently has all her therapies. For the past 6 months, I’ve been getting her to 6 therapy appointments per week, which presents a bit of a problem for someone with twins– something must be done with Etta while Claire’s working on her skillz. So, for all this time, Etta has been attending the fabulous daycare at the hospital where my husband works.
Meanwhile, the therapy place has this “preschool,” which would be fully covered by Claire’s insurance and TEFRA, but we were waiting on a spot. This is a better situation because Claire will be able to get all her therapies in house, and not have to have them back to back, ever, which I know she will like, because when she has to have two therapies back to back, she mostly falls apart through the second session. And, on top of that, she can finally start the feeding therapy we’ve been waiting on because adding another appointment each week to the mix seemed a little nuts. It’s also better because she’ll get to be in a class with other kids with similar stuff going on, including another kid about her age who also has spina bifida! I really like the idea of her having a picture in her head that kids like her are “normal,” and I like that this preschool is a mix of kids with physical/intellectual/social disabilities, but also typical kids.
So, with Claire starting at the preschool, Friday is Etta’s last day in daycare. After 6 months of lots of one-on-one time with Claire, I have to confess, I’m really looking forward to some time with my Etta girl. And I’m REALLY looking forward to seeing Claire’s progress once she’s finally getting all the therapies she needs.
She’ll be in “school” from 8ish (let’s be real, I’m just striving to have her there by 9) to 4:00 each day, Monday-Friday, which is a big schedule change for us. Just getting the three of us out the door, Etta dropped off at daycare, and Claire to therapy by 9 three days a week has been a struggle for me. I think I’m going to have to start (sob) getting myself up early enough to shower and get myself ready before the girls wake up. I have been enjoying getting to sleep in to 7:30! (Can someone please go back and tell 22 year old me that one day I’d think 7:30 was sleeping in? She’ll laugh in your face.) And I’m really going to have to get better about having bottles and bags ready for the night before.
Who knew we’d be arriving at “first day of school” so soon?!
The title of this post is something I’ve been asked by twin parents a little behind us in the journey. It’s something I asked other twin moms when I was lost in the sleepless fog of new twin babyville.
And oh how I want to hug all new parents, but especially twin parents, and just say, yes, it gets easier. Because sometimes you just desperately need to believe it will.
But really, the thing I keep thinking, about life, about parenthood, is not that it gets easier, but that it gets different. And each time it gets different, you get different too: you learn, and adapt, and find strategies, and just as you master whatever it is, it gets different again. But the thing is, through all the changes, you get stronger, tougher, better, and you’re able to more confidently deal with all the change.
A friend reminded me on Facebook recently of a phase I did not love. It’s that point where your baby figures out how to pull up to stand, but still can’t get down. And baby is SO EXCITED about this new standing skill that she wakes up in the middle of the night just thinking about standing. So she stands in her crib. And then she realizes she is stuck and freaks the freak out. Which means lots of midnight wakeups for dear old mom and dad. And so, for a few weeks, we had to keep lying her back down, patting her back, singing her songs, while she struggled to get up and stand again, over and over, until she finally crashed. It was really frustrating.
But here’s the thing: that never happens anymore. Now we’re just getting middle of the night wakeups because Etta’s too busy cutting teeth and thinking about walking to sleep, and Claire’s been sick, and, well, see what I mean? It got different. It’s still hard.
I think the key, the thing that I can tell new parents, singleton and multiples, though, is that the rewards get greater through all the change and all the hard. In the very beginning, you’re just living for the point when they finally finally just smile at you. And that smile is amazing. It’s like the payout for 2 months of sleeplessness and spit up and practicing all those 5 S’s.
And it only gets more rewarding from there. They, your favorite little humans, just keep becoming more fascinating, more capable, and more interesting, more like actual people. The biggest thing for me as a twin mom is, my kids are becoming actual siblings who talk to each other and play together, and that bond forming is just a joy to behold. Sure, there’s lots of hair pulling and fighting over toys, but that stuff is far outweighed by the heart-melting awesome that is watching my two kids pass food back and forth in their high chairs, babbling to each other. Or when Claire actually asks for Etta by name, and Etta turns to her, and they laugh and laugh.
So maybe it does get better. Still not sold on the easier, though ;)
Teamwork: working together to open the drawer and remove all the diapers inside. Sibling love!
A friend asked on Instagram if I’d consider doing a post about the bufflogals’ toys, and her wish is my command.
She noticed that the gals’ toys are generally wooden and rather atypical from what is generally on the market for babies and toddlers. This is by design. I want our home to be peaceful and happy, stimulating but not overstimulating, full but not cluttered. And if it’s not too much to ask, I want the stuff we bring into it to look good! This extends to the choices we make for our girls’ toys. While I have only begun to educate myself on things like Montessori and Waldorf, my general inclination and instinct is that their toys should be about them using objects to educate and enjoy themselves, not just being entertained by lights and music and bells and whistles. For us, this means nothing that lights up or makes sounds, pretty much nothing battery operated, and very little plastic. Again, this isn’t because of any particular ideology, but just the result of me following what feels right for me and my kids. I’m not in any way saying other sorts of toys are bad, but this is just where we’re at and what we want for our home.
Etta and Claire have two main play spaces, their room and our den. In each space, it was important to me that the toys be arranged where they could get them out themselves (and eventually, put them up themselves), and to have things displayed and accessible rather than buried in a bin under a million other things. Things they can see actually get used, whereas things in a giant pile get forgotten.
Here you see the girls’ play space in our den. The shelf and tent are both from Ikea, and my mom found the chairs at a flea market. They have a little white table that goes with them, but it’s being used as a side table until we find an actual side table to go next to the couch. Also pictured is the Little Wheely Bug, which I found for a steal at a local consignment sale. Etta’s just now able to really start to use it at 15 months, and it’s the smaller size. The green-sided walker was a Christmas gift, but I have to say, I’m not as crazy about it as I thought I’d be, as it seems more prone to tipping, though they still sit in front of it and play with it. I REALLY love the walker wagon Claire’s kneeling with, which is a brand called Janod from Oompa.com, which along with Amazon is one of our main toy sources.
This is the contents of the musical instrument box. Most are Hape, purchased via Amazon. The shaker eggs aren’t actually toys but legit musical instruments, but the girls love them.
I really love these alphabet blocks from Janod.The Janod walker wagon in action. As you can see, it can support Claire’s weight, and even without anything in it, is super stable for kids just starting to walk, not prone to tipping.We’re big fans of this collapsible tunnel, a gift, which folds nicely when we’re not playing with it.Here the girls are playing with our one and only noisy toy, the flowers, which are Lamaze brand. You can see the Hape shape sorter and some Melissa and Doug food. Our Ikea baby gym, now useful as an object to pull up on, is in the background.Little Wheely Bug in action, with a push from sister.A rare exception to my no-plastic rule: this Little Tykes rocking horse. It’s perfect for little toddlers because it’s low enough that they can get on and off themselves, and the seat has a back, which keeps them on it. And I think it’s not bad looking.
Here you can see the girls’ very messy room, and the toy shelf their daddy built for them. In the bin on the bottom left are wooden blocks that belonged to me as a child, and in the bottom right are little things we’ve collected along the way, like Ikea stacking cups, a Melissa and Doug pull toy, their Kathe Kruse dolls, and their Taggies toys. You can also see some soft books, a Melissa and Doug bead maze, a Skip Hop stacker pull toy, and an Ikea stacker toy. (Also, please note that Claire has pulled herself into a kneel, a big deal, which is why this picture was snapped in the first place.)
Basically, what I look for in a toy is this:
Is it kid powered? If it requires batteries, I don’t want it. (I took the batteries out of these toy keys before I ever gave them to the girls. They still love them.)
Is it used BY the kid, or does the kid just watch it go?
Does it help hone skills or encourage creativity or imaginative play?
Does it make noise? I’m fine with instruments the girls use to generate noise, but I don’t want to hear bad midi files of classical music. I’d rather put on my old iPod, which I’ve loaded up with tunes for the kiddos.
Is it possible to find this made of wood or other natural materials?
And, generally, is it fairly gender neutral? I’m fine with the girls playing with dolls, etc, as they get older and ask for such things, but in the meantime, I see no reason to push them toward gendered objects.
A few people who have visited our house have asked how we got all the grandparents and other relatives on board with this plan. The truth is, I grew up with these sorts of toys, so my parents were all about it from the start, and everyone else has been pretty happy to shop from the Amazon wish list I keep constantly updated for Christmas and their first birthday.
You know, Etta’s never had an update of her own, though Claire’s had many. So here’s the scoop on our littlest lady.
She’s the littlest big kid I’ve ever seen.
She’s like one of those super concentrated detergent packages, a big punch of personality in a tiny body. She’s in the 10th percentile for both height and weight, and I often find myself calling her things like “Peanut,” “Little Britches,” “Itty Bitty Etta Baby,” and “the Tiny One.” And yet, despite her small stature, there’s no denying that there’s very little “baby” left in this toddler. She’s on the go go go, climbing furniture yet lacking the confidence to let go and walk without holding onto something. In fact, this is a pattern with her, fierce independence paired with strong attachment, which is really how attachment is supposed to work, as I understand it, with a strong attachment giving her the trust to strike out on her own. She likes to play near but not with us, but returns frequently for a hug or to lay her head down on me and have me stroke her hair. She loves trying new things as long as we’re nearby, and she loved a recent trip to the splash park, laughing with almost maniacal glee as her daddy walked with her through sprays of water that kind of freaked her sister out.
Splashing happily at the splash pad.I left the room for a split second and she ended up here.
She’s also a total ham. She’s mastered the wave and the blown kiss, and she pairs both with an adorably squeaked “heyyyyyy” or “haiiiiiii” or “byyyyyye,” for maximum effect. Recently we were at a party standing with a group of people. I asked Etta if she wanted to go outside, and she waved to the group and said “byyyyyye!” They all “awwwwed.”
This big personality means very big feelings too. When she is happy, she is very very happy, and when she is sad, she is very very sad. Often, her sadness is related to my thwarting of her plans for mischief and mayhem: why won’t I let her sit on the end tables? Why won’t I let her fling herself off the couch? Why won’t I let her chew on iPhones and remotes? Why won’t I let her turn the Xbox on and of and on and off and on and off? Because I’m the worst.
My tiny tot often has disheveled hair, dirty knees, grubby hands, and a mischievous gleam in her eye. I’m so glad she’s mine.
Coming back for snuggles, with a bottle stolen from sister.
If you’re following me on Facebook or Twitter or Instagram, you’ve already seen the bragging, but I have to share this with my blog friends too: Claire crawls now.
She’s been trying for a long time, months, and working on her skills in PT, but all she was really doing was lunging forward, ending up on her belly, scooting backward when she meant to go forward, and barrel rolling. She managed to combine those skills to get pretty much everywhere she wanted to be, but she watches Etta, and she knew crawling was the way to go. (Etta’s not walking yet at 15 months, though she cruises like a champ and could let go and walk right this minute if the thought actually seemed to occur to her.)
Then we got the shunt exactly a week ago, which removed a lot of pressure from her head/spine, and her neurosurgeon told us to fully expect faster progress in the mobility department. Which, I’m not saying correlation equals causation, but it sure seems to have worked. Yesterday was the first day her PT noticed her using her hip flexors, and yesterday she finally got her legs into the crawling equation and took off. She’s got forward motion and is also pulling up to her knees using the furniture.
Yesterday with her braces on and her therapist holding her arms, she also took actual steps, demonstrating she has all the components necessary to walk someday. Which just makes me want to say “HA!” to a certain rehab doctor who, about a year ago, after a VERY short exam, and ignoring our statements that Claire moved her legs intentionally, declared she would never walk. (Meanwhile her orthopedists have long said that she would, so we chose to believe them.)
I’m confident that Claire has had these abilities all along. It just took her a while to make the connections and figure it out, and while she may need a little extra help, she gets there. And she’ll keep getting there.
Just woke up from as good of a sleep as one can hope for in a hospital, cuddling my Claire Bear all night. She came through surgery like a champ, waking up happy after anesthesia, and generally being the most chilled out kid who just had brain surgery anyone has ever seen. Her surgeons say everything went great, and judging by the pressure her cerebral spinal fluid was under, it really was time for us to do this VP shunt. She probably has been having a headache from the pressure lately and we didn’t even know it. Now, her head should stop growing so quickly and the rest of her should catch up.
We’re super grateful for the excellent care we’ve been getting, as well as all the love and support from folks like you. It looks like we will go home this evening.
I’m back from an amazing weekend in NYC helping my sweet sister Jessica shop for a wedding dress. Now it’s back to reality in a big way because Claire the Bear is having surgery tomorrow. She’s having a shunt placed to help treat her hydrocephalus (the fluid that builds up in her head because of her spina bifida), which has gotten to the point of causing fluid to build up in her spine. This is called a syrinx, and because it could compromise her mobility, we have to finally do the surgery this time, almost exactly a year after we first thought we’d be getting it done.
I’m glad we could wait this long. Since she’s older, the procedure is much less risky than it would have been on a tiny baby, and that’s always good news. We trust our surgeon completely and know she will be in the best hands. All you lovely folks: please be praying for or sending positive thoughts her way, whichever you do. Thank you for always cheering Claire on. She will be in the hospital overnight, but it should be a fairly quick recovery, so let’s hope that’s true!
We just got back from a visit with our (much loved) neurosurgeon, and based on new information in last week’s MRI, we have decided in consultation with her and another neurosurgeon she asked to give a second opinion, that it’s time for Claire to get a shunt placed to treat her hydrocephalus. The lay explanation is, due to her spinal defect and chiari malformation, Claire’s cerebral spinal fluid doesn’t drain from her head and spine properly, causing fluid to build up in her head (aka hydrocephalus). While she has had the hydrocephalus from the start, we and our surgeon chose to take a conservative approach instead of operating when she was a wee baby, because surgery is always risky, because the risk of infection and complications is greater in younger babies, and because clinically, she was having no symptoms or problems from the hydrocephalus other than a big head as a result of the fluid buildup.
However, the MRI we got last week showed that not only are the ventricles in her head very large, indicating a lot of fluid has built up there, but also she has developed a syrinx, or pocket of fluid within her spinal cord. This has the potential to cause her to have problems with her arms and legs, and given the great strides and progress she has made mobility wise, and the hope we have for continued progress, we do not want to risk this syrinx compromising her physical abilities in any way.
It is for these reasons that we’ve agreed to have the shunt placed on Monday morning. We are of course a little disappointed that she has to have neurosurgery, but we are ultimately confident that this is the right time, and hopeful that taking this step now will give her the greatest chance to achieve all she can developmentally. She’ll stay one night in the hospital, and then should be back to her normal activities within a week or two. Thanks for always cheering Claire on– her internet fan club means more to us than you can know.
It’s been a while since I updated all of Claire Bear’s fans on how she’s doing these days. Most readers know that she has spina bifida, that she had surgery just days after birth, and that we’ve been sort of waiting to see how much her spinal defect will affect her.
The short answer is: she’s doing great. She’s a chilled out, happy girl who is a bit of a ham. She can charm any stranger with her bright eyes, big smile, and penchant for waving, giggling, and clapping. She is also a very observant little person, and seems to constantly be watching and figuring the world out. Even though she’s not into eating solid food yet, she loves to swipe pieces of it off her sister’s high chair tray, and before she got moved into the older room at daycare, would sit on the mat and swipe toys from smaller babies as they crawled by. She even figured out, on her own, from observing Etta, how to get from sitting unsupported down to her belly so she can roll around to wherever she wants to go. Where I used to be able to count on finding her wherever I left her, now she’s known to roll out of her room and down the hall. They even call her “the mechanic” at daycare, because she likes to roll under all the cribs and appears to be inspecting and fixing them.
Medically, she is doing really well also. She had a looooong day at the spina bifida clinic yesterday, and we saw rehab, urology, and orthopedics. Ortho continues to be impressed with how much function and sensation she appears to have in her legs considering the location and severity of her spinal defect, and the good news from urology is that we don’t have to start using catheters or anything at this point (bladder issues are very very commonly associated with spina bifida). Rehab, formerly a sore spot for us since one doc declared “she will never walk” after a very poor examination even after we said that she supports her weight on her legs for short periods, went OK too. We actually got to show the doctor how she can stand with support, and we got our first prescription for some AFOs, essentially her first pair of leg braces, which we hope will support her ankles and knees and help her learn to crawl, stand, and walk.
She’s been going to physical therapy for a couple of weeks now, and we are so happy to finally have that started. The therapist turns out to be the older sister of a friend from high school, and I have to say I just love her. Despite a very teary first session in which Claire *wailed* the entire time (her stranger anxiety has really ramped up lately– she also recently wailed at ZaZa’s, a local pizza joint, when the most grandmotherly, sweet-looking woman in the world dared to approach her), Claire has realized her PT is pretty cool and has neat toys, and now only cries when tired or frustrated with an activity.
Because Claire needs 3 PT sessions per week, 3 OT sessions per week, and now we’re talking about adding in speech therapy to help with her oral issues, we are working on getting her into a developmental preschool where she could receive all these therapies on site. With another one year old to wrangle, coordinate care for, and generally deal with, taking her to and attending that many sessions per week myself would really just be a logistical nightmare, and we’re so thankful this is even an option, that I could drop her off and know she was getting care from folks who don’t have a single issue accommodating her needs. Much as we LOVE LOVE LOVE our current daycare, the fact that she’s the only kid in her room who can’t feed herself or take a sippy cup is a bit of an issue. Even better, the preschool takes siblings, too, so if I get a job in the fall, Etta could join her. And the best news of all? Claire’s Medicaid TEFRA, a benefit she qualifies for because of her disability, for which we pay an income based premium, which covers basically all of her care not covered by the insurance we get through my husband’s work, would completely cover the cost of the preschool for Claire. AMAZING!
So, now I’m on the hunt for cute shoes that fit over AFOs (I’m thinking a sweet pair of mint green Vans might be my choice), and just generally excited that our sweet girl is finally getting the help she needs to make some progress in the mobility department. She’s starting to realize that Etta can do things she can’t, and it has her raring to go!
erniebufflo's south & west kitchen 