By now, you have probably seen me shouting this from various social media rooftops, but my Claire Bear took her first independent steps with her PT today:
This is HUGE. She has been so motivated and has worked so hard to get to this point. All day at home, she grabs us by the hands and says, “Wanna WAH!” I think she knew she was super close, and now she’s finally done it. And she couldn’t have picked a better day– this morning I logged into Facebook and saw the Spina Bifida Association going on about birth defect prevention awareness and how it’s folic acid week. Stuff like that always makes me a little ragey, because I wasn’t folic acid deficient. My kid just got spina bifida anyway. It happens. It’s not my fault, and it’s not anybody’s fault. By all means, if you are a woman of childbearing age, take your folic acid, to prevent all sorts of possible problems in the event that you should become pregnant. But please don’t labor under the misapprehension that all neural tube defects are preventable– I’ve even heard of misinformed DOCTORS saying things like, spina bifida is 100% preventable, and blaming mothers for their kids’ disabilities. (Best estimates I’ve read say that folic acid could prevent about 60% of cases of spina bifida. It would still exist even if everyone had plenty of FA.)
But today, today there is no raging about folic acid. Today there is just rejoicing and celebrating that my beautiful girl has finally achieved something she has been working SO HARD to achieve. She’s stubborn and tenacious and hopeful, and I truly believe nothing can hold her back.
On Monday, I dropped Claire off at preschool for the first time in over a week after our vacation (more about that later). As I carried her in, she smiled at her teachers, saw that breakfast was being served, and rubbed her chest. “Please? You want some breakfast, huh Claire?” her teacher said. And that’s when it hit me…
It only took us three months, but we finally figured out that they’ve been teaching her baby sign language at preschool. And suddenly, what I thought were just funny things she likes to do with her hands, maybe pieces of songs from circle time (she loves the motions to Happy And You Know It and Itsy Bitsy Spider), became words with meaning– meaning we’ve been missing all this time.
Meanwhile, my mind flashed to what the last few months must have been like for Claire: More, please. Eat, please. Up? What is wrong with my parents? Do I live with idiots? My teachers understand me just fine! How many times do I have to say “more” to these morons before they refill my milk? She must have thought we were incredibly dense.
Now, though, it’s like a whole new world has opened up. This morning she pointed to a book and signed “please.” So I read it to her. Crazy!
Now I’ve got some catching up to do in the baby sign language department, because Claire is way ahead of me.
I must say, I’m super impressed with her preschool teachers– it absolutely makes sense to teach baby sign language at a special needs preschool where a lot of the kids are either nonverbal or speech-delayed. This puts all the kids on a level playing field for at least the bare minimum of communication.
Meanwhile, there’s at least one other area where I have to catch up with preschool: somehow, after a year of struggle, her teachers and her feeding therapist have gotten her off of bottles, the bottles she has preferred exclusively over any other type of bottle or cup since the NICU, and she now drinks from a sippy cup for them. Well, the jig is up now, Claire, and you’re about to switch to sippies at home, too. No more washing and reusing the same 12 disposable nipples that we nabbed from the NICU and have been reusing all this time, over 18 months now. How do I sign “sippy time”?
October is Spina Bifida Awareness Month, not that you’d know it, as apparently October is the most crowded of all awareness months, most famously shared with Breast Cancer Awareness, but also Down Syndrome, Autism, Domestic Violence, and Bullying Prevention. To make matters worse, the Spina Bifida Awareness symbol is apparently a yellow ribbon, which everyone else knows is the symbol for supporting the troops, spotted on many a bumper sticker. Basically, I think we need a new month and a new symbol, but they didn’t ask me.
Though “they didn’t ask me” could be the whole theme of my all-too-keen awareness of Spina Bifida in general. They didn’t ask me, and they didn’t ask Claire, if we wanted SB in our lives. They didn’t ask the other 1 in 800 babies born with myelomeningocele SB (the most severe form, what Claire has) either.
I feel like this week has been an effort on our doctors’ part to make sure we’re REALLY REALLY AWARE of this whole spina bifida thing. Last week we made 3 separate trips to the children’s hospital for various tests, and this week we made two trips to talk to the doctors about the results of those tests. And the news, while not surprising, is bumming me out a little bit. In addition to mobility limitations, bladder and bowel issues are very common for people with SB, and though we had been hoping to continue avoiding it, in order to prevent recurrent UTIs and prevent damage to Claire’s kidneys, our urologist says it’s time to start catheterizing to get her bladder fully emptied. This means cathing her every 4 hours. She’ll also now have to take a daily medicine to prevent bladder contractions. A side effect of this medicine will likely be constipation. I know (really, I do) that ultimately this is the best course of action and is what will help her maintain continence as she grows, but for some reason in my head, having to take this step, having to cath, seems like it makes her more disabled, more different, and I just don’t like it.
We also got x-rays and saw the orthopedist, and it looks like at some point, Claire is going to need a surgery on her left leg to fix the way her foot turns severely inward. For the short term, she’s getting a special brace to wear at night, but in 6 months to a year, we’re looking at another surgery. Again, I’m all for whatever we need to do to give her the most mobility and independence, but hearing that my baby needs another surgery is hard.
And yet, we have so much good news too. She got an MRI, and we saw our neurosurgeon, and her shunt is working beautifully. I really credit it with the way her mobility is exploding, and our surgeon agrees. We’ve officially been cleared by neurosurgery, and, barring any shunt malfunction or infection, won’t be seeing her for a YEAR! We’re definitely celebrating that milestone.
So, what would I like you to be aware of this month for Spina Bifida Awareness Month? Yes, I want you to know that sometimes it’s hard. Sometimes there’s more surgery and more hassle and more hard work than we’d like. Sometimes I get angry or sad. But mostly I don’t. Mostly, I focus on the fact that both of our girls are beautiful, funny, joyful, smart, silly, typical toddlers. Mostly, I think that’s what I want you to be aware of– Spina Bifida has challenges, but it’s just another way of being a human in the world.
Before I had kids, I admit I didn’t know much about toddlers. I’d heard a lot about the terrible twos and threes (and debate about exactly which is more terrible), but I hadn’t spent a lot of time around toddlers.
Can I just say that so far, I greatly prefer toddlers to infants? I know we’re only like 6 months into this toddler thing, and that my kids were a little late on the actual toddling, but this seems to be a really cool phase. They’re learning and growing and just exploding with personality. They’re curious and funny and yes, opinionated, quick to flop on the floor and wail, but also quick to giggle and squeal with delight.
Claire has really started walking. She uses a little push wagon as a walker, but when she’s all strapped into her braces, shoes, and de-rotation straps, she can book it. And she’s SO PROUD. She knows she has worked very hard in therapy to get to this point, and she is thrilled that she can finally do it. Watching her go just fills me with joy. When she was born with a more severe spinal defect than we had hoped, a myelomeningocele from L2 or 3 down into her sacrum, we were worried about what her mobility would be like. And here she goes, chugging away, totally besting our expectations. Now she’s decided she can do whatever her sister can do, and has taken to trying to climb the furniture. I’ve had to let her take a couple tumbles, because she refuses to believe me that gravity exists, and will literally take my hands off her body if I try to guide her. I guess gravity itself will be the best teacher when it comes to crawling off the edge of the couch.
This morning, we walked into the girls’ room to get them up, and they were BOTH standing up, holding onto the crib rails. The first time Claire has done that, and she wasn’t even wearing her braces. She was just grinning. Love that girl.
Etta’s bursting with new skills and interests too. The one that does my English major heart the proudest is her discovery of books. Everyone says to read to your babies, and we have, but up until recently, they haven’t seemed to really enjoy it or be interested in it. Not so now. Etta will go to the shelf, pick out a book (her current faves are “How to be a Grouch by Oscar the Grouch,” an Ikea book called “Heroes of the Vegetable Patch,” and “Brown Bear, Brown Bear”), bring it over to wherever I am, hand it to me, crawl into my lap, and wait for me to start reading. She turns the pages most of the time, too. I read those three books hundreds of times a day, it feels like, but I don’t mind a bit.
Another fun Etta trait is asking “What’s dat?” and pointing her little finger. She’s interested in everything, and wants to know what words they’re called. It’s become a bit of a game we play in their room, which has lots of animal pictures on the wall, and she points to different ones almost like she’s giving me a pop quiz. She really enjoys hearing me say the word “jellyfish.” She loves to whisper the word “shoes,” and both girls are obsessed with the word “cat,” or, as Etta says it, “TAT!”
Mealtime is also fun because they’ve started to figure out how to use a fork and spoon. They often eat what we eat, and I really enjoy all of us sitting down to dinner together. Claire has worked very hard in feeding therapy and is able to eat more and more foods and even occasionally drink from a sippy cup.
Overall, while there have certainly been some terrible toddler moments, I’m really soaking up the awesome ones.
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?!
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!