This kid won't let me feed him with a spoon anymore. And he scrapes it off his own chin when it drips! Crazy guy! I happen to think he's the smartest kid in the world.
The thing is... he's not talking. No words. He babbles all day long and he understands a crazy amount of what I say, but won't form a single word. Tomorrow I'm going to request speech therapy through Early On. I really feel like his speech will just take off one day, but I'm getting impatient. Hopefully we can get started soon and it helps!
I have a couple videos here that I took to show some of Lewis's progress. The first is from a couple months ago and the second is from yesterday. You can see that in the first, Lewis keeps his left arm under him and the right arm out. We think this is because Lewis can lean into his left hip better. When you lay on your stomach and lift one arm, you shift your weight to the opposite hip. It's harder for him to shift his weight to his right hip, even though it's his stronger hip. We've been working on that a lot in therapy and it's helped him to adopt a new crawling style. In the second video, you can see his arms are much more symmetrical. It's definitely still a work in progress... if he's tired or on surfaces that are harder to crawl over, he'll fall back on his old style, but I still think the improvement is huge.
Lewis's favorite things can really be narrowed down to a list of two: the ball popper and Gauge. Here's a video that sums it up.
As you can see, he has that toy (which may be the loudest toy in the universe... I covered the speaker with tape which cut the volume in half and it's STILL loud) figured out. When it's low on battery (which happens every other week) it doesn't always pop the balls very well so he knows you either have to shove them down the hole or pop them off yourself. His favorite one is purple, which he carries around all over the place. And if it's lost... well the ball popper just isn't worth playing with. The balls are not limited to being balls either. As seen in the video, they can also be food. They're also commonly used as a phone.
As for Gauge, well Lewis is just in love with him. Gauge is in love with anyone who will give him food. And since Lewis is either spilling or covered in food about 95% of the time, Gauge is never far away.
And in case you had no idea what he was doing, Lewis is debuting a new and improved kiss-face in this video. I think it's hilarious and I can't get enough of it!
We're done seeing our specialists for the month. Urology went well with nothing new to report. He peed on the urologist but seriously, I wonder how many times a day that guy gets peed on...
Anyway, next was orthopedics. Orthopedics always makes me nervous. I've never really had a reason to be nervous before. Now I do. But let me start from the beginning. We had been seeing Dr. H but at our last appointment he told us he's moving out of state so he set up our next appointment with Dr. R. I met her for the first time at this appointment. She's very nice and so far I like her. Except for this conversation...
Dr. R: Based on Dr. H's notes, it looks like Lewis's defect is at the L4/L5 area.
(I've read the notes that she's talking about and in the notes it says that I told him that. I NEVER told him that. I don't even KNOW Lewis's level but if I had to guess, that's not even what I'd guess.)
Me: I don't know his level.
Dr. R: Well, it's good that it's L4/L5. Kids with that lesion level typically will have a desire to walk. Any higher than that and we don't see that as much.
Conversations like this REALLY REALLY bother me. They make me very angry. I wish I could come up with the words to say in the moment but I never can. She said all this before ever even looking at or touching Lewis. Not only that but I DIDN'T ASK HER TO TELL ME WHETHER LEWIS WILL WALK. I don't think anyone can tell me that. My world does not revolve around whether or not Lewis will walk. It is not always on my mind. When I meet someone and that's the first thing on their mind, it throws me off a bit. Wait, do you not see my beautiful child? Is that all you see?????
The whole lesion level thing really bothers me, too. All it does is cause heartache and worry and give us wrinkles and grey hair. It tells you nothing.... NOTHING. Every day I hear, "he's an L3 but he's functions like an L5." Really? What is an L3 supposed to function like? Because it seems like NO ONE FUNCTIONS AT THEIR LEVEL. So maybe the level really actually doesn't mean a gosh darn thing!
Ok my first rant is over, on to the next.
Next, Dr. R checked Lewis's spine for scoliosis. She said his spine looks great. YAY!!! This got me thinking back to the whole syrinx thing that is still up in the air. To refresh your memory: Lewis had an MRI in May and they found a rather large syrinx, which is excess fluid on the spine. He's not showing any symptoms, but according to his neurosurgeon, Lewis may not be able to tell us even if he is experiencing some of the symptoms (pain, tingling, etc.). He'll have another MRI in November and based on that, Dr. F may decide to operate. He'll either do a decompression or a tethered cord release. He'll probably start with a decompression, but there's no guarantee it will fix anything. So... my point in all this is that scoliosis could be a symptom of a syrinx. And, guess what?! No scoliosis! Now, what about the other symptoms that Lewis can't tell us about? Pain? I'm like 99.9% sure Lewis is not in pain. Have you seen this kid? He's so happy! And if he's not, you know it! That kid is not in pain! So, what are we left with? Tingling? Really? You'd do brain surgery for some tingling? That just seems completely and totally ridiculous. Just CRAZY! I realize we're trying to prevent damage, but I know the signs to look for and I'll take him in the second I see any of them. But we're not going to be doing some preventative brain surgery that might not prevent anything.
You have got to be kidding me...
Back to the appointment. Lewis had X-rays of his hips 6 months ago since he's at risk for hip problems. He had them again at this appointment and they showed his left him has moved out quite a bit. Bummer. They won't do surgery for these hip issues in kids with SB since they don't have the muscle mass to keep anything in place once it's surgically placed there. I'm thankful for no surgery. They're ordering him an abduction brace that he'll wear at nighttime to hopefully carve out a spot for his hip to sit. Having one hip out can lead to one leg being longer than the other (among other issues, including scoliosis), requiring him to wear a lift in one shoe. We're a long way off from that and we're praying this brace does the trick. It's frustrating, and I feel like I did something to cause this to happen, but I'm not as worried about it as I thought I'd be. This stuff is not the end of the world like I always think it will be. If only I had known that while I was pregnant!
Crossing my fingers! Hoping this brace does the trick!
Lewis fed himself with a spoon for the first time the other day. I'm using the term "fed himself" loosely... but he really did catch on quickly, I think. Of course I have the whole thing on video for your viewing pleasure. I realize it's a ridiculously long video of a one-year-old eating applesauce, but I've already watched it approximately 40 times (I can't get enough of it!!) so I think you can suffer through it once. ;)
If this post is a little choppy or sounds like I have my mind on other things, I do. There is a huge spider lurking around my computer. I tried twice to kill it but this thing is the Jason Bourne of spiders. I just know that the next time it turns up, it's going to be crawling up my sleeve or somewhere equally mortifying. So I have one eye on the screen and one eye looking for the spider. Anyway, I decided it's about time for a formal update. Lewis just had his 15 month appointment yesterday and here are his stats:
Weight: 22 lbs
Height: 29 1/4 inches
Head Circumference: 49 cm
He's gaining weight like a champ... keeps moving up those percentiles. He's become very picky with food lately and doctor told me he's gaining well enough that it's safe for him to go hungry for a meal if he won't eat what's given to him. He's refusing things that I know taste good and I know he has enjoyed in the past... it's getting ridiculous. So I'm going to try to nip it in the bud. We'll see how it goes...
His height is on the small side, but he's on the charts, so I'm happy!
His head circumference has always been in the 70th percentile and has recently jumped to the 90th. I had noticed it was steadily growing from the few times I measured it at home. A jump in head circumference in Lewis could mean that his shunt is not working properly. Lewis's soft spot is open and when you feel it, it's clear that the shunt is functioning. There are times when it's soft, and times when it's sunken, but it's NEVER full. The doctor asked if we had a family history of big heads. Um... YES. So it looks like Lewis is growing his Miller-sized head. Overall, the doctor is very happy with his development!
Lewis has a bunch of appointments coming up this month. He sees Urology, Orthopedics, and has a full clinic scheduled (although since we're seeing everyone anyway, I think I may cancel the clinic appointment). In November he's supposed to have his follow up MRI to check the syrinx they found on his spine. Please keep Lewis in your prayers on this. We'd like to avoid surgery if we can and are praying that the syrinx will go away on it's own.
Therapy is going very well! We're going twice a week until the end of the year (probably with a couple breaks here and there). This week Rene was working on Lewis's right hip. His right leg is his stronger leg, but because of that, his hip is tight so she worked to get his hip to relax and loosen up. When we got home yesterday, I put Lewis down for a nap and watched him on the video monitor as he squirmed around in his bed instead of napping. While squirming, I saw him lift his right leg up, grab it, and bring his foot all the way to his mouth. That hip has ALWAYS been too tight to reach up that far! I was pretty excited to see him do that! All this without doing any stretching... pretty amazing!
We've also been working on some things with his arms but I'm hoping to get a video of it soon, so I'll save that for another time. He's making great progress. More importantly, though, he's being a good sport about it and he's working hard. I want that to be the focus in years to come. Lewis may or may not do certain things and there will be a point where he can't progress any further. I want him to know that it's the hard work and good attitude that are important, not the milestones or achievements. I'm starting now because I think he understands a lot more than I give him credit for! :)
It seems like lately I've taken a lot less pictures and a lot more videos... this kid just won't stay still! Lewis has been learning some new skills that will pay off in the future when he joins a band...
He's been practicing the guitar.
And dancing. (Apparently this bouncing, dancing thing that kids do is really good for them. All those little movements that make things click in the brain. Lewis does it all day long... who knew therapy could be so much fun!)
Ok so this video requires a little bit of explanation. When Lewis was a little younger and would get sad and cry, I would sing songs to him like "Jesus Loves Me," "Rockabye Baby," "Jesus Loves the Little Children," and songs like that. Recently, I tried singing those songs to him when he wasn't sad and it actually MADE him sad. I think he just associates those songs with being sad (although, admittedly, it might be my singing!) Anyway, so of course I had to get it on video, even though it seems kind of mean!
It has been WAY too long since I blogged. We've had a pretty busy month filled with a lot of blog-worthy things. But this summer is so jam-packed with fun, I just don't have time to devote a blog to each event. Soooo.... I'll get you caught up with a quick recap!
So far this summer,
Lewis had a birthday,
and ate some cake!
He got spoiled by some pretty cool people
who taught him some new tricks... and took great care of him while...
Mommy and Daddy spent some time in San Francisco,
took a frustratingly long hike with a friend...
missed Lewis a lot, but had a REALLY great time!
Once home, Lewis got his first haircut
and is much happier sans shag!
Then we spent the 4th of July at the beach
where Lewis discovered sand and LOVED it.
To sum it all up, our little boy is getting SO BIG, this summer is going by SO FAST, and we are having
I can't stop putting up videos of this kid! Probably the only people who watch them are my mom and me... but whatever, I love them! Anyway, I don't think I've put one up of him crawling before. (His PT says it's technically creeping so she couldn't check the *crawling* box on his evaluation... who cares! He gets himself from point A to point B!) Anyway, he's getting pretty fast and is venturing farther around the house. On a side note, I would just like to point out that it is really hard to army crawl... I've tried. Lewis would, for sure, beat me in a race. And I think that's awesome!
Really it should be, I hate Spina Bifida #1, because I'm sure there will be plenty more...
Some days I forget about Spina Bifida. I mean I never really truly forget about it. I take Lewis to appointments and work on therapy with him at home. But I've gotten so used to it, it's just a normal part of our life. What would we do if we didn't have to do all that?? I was starting to live in peace with Spina Bifida. I still hated it, but we had come to sort of a mutual agreement. I ignored it and it sat in silence. I was ok with that. I'd read poems and stories and I would think, this isn't all that bad.
Then some days I remember. Lewis has Spina Bifida. And it doesn't just mean he might not be able to walk. I can handle that. It also means scary things.
Lewis had an MRI last week. It was his first MRI and will serve as a baseline for future MRIs. We went in Wednesday to discuss the results with Lewis's neurosurgeon and didn't exactly get the news we were hoping for. I was prepared for the worst but secretly I was hoping for him to say, "This is amazing! I've never seen such a perfect brain and spine! I can barely believe he has Spina Bifida!" Yeah... wishful thinking. Anyway, Lewis has Arnold Chiari II Malformation. We knew that. It goes along with the SB. Basically the back of his brain is being pulled down into his spinal column. His goes down to about the C3 vertebrae. That's far. Lewis also has something called a syrinx. A syrinx is an accumulation of fluid on the spine, kind of like hydrocephalus but on the spine. It can be caused by a tethered cord, Chiari, or a number of other things. We don't know what's causing Lewis's. It's in the thoracic area of his spine and represents a significant cross-section of his spinal cord.
So what does this mean? For now, they lowered the setting on his shunt. He was on the highest setting but they bumped it down one to see if that would shrink the syrinx. Since this is his first MRI, we don't know how long it's been there or how fast it's growing. Lewis will go back for another MRI in six months to see if it has changed at all. If it's gotten bigger, he'll probably need surgery- most likely either a decompression surgery (they'll remove the top few vertebrae and a portion of the back of the skull to relieve the pressure on the back of the brain) or a detethering (they'll go into his initial repair site on his back and remove scar tissue that is keeping his spinal cord from swinging freely... the problem is the surgery just creates MORE scar tissue so it's a vicious cycle). Lewis isn't currently having any symptoms that we know of from the syrinx or Chiari malformation. It's a tough call, though, because he can't tell us if he's getting numbness or tingling in his legs. He can't tell us if he has a headache. I find myself analyzing everything he's doing. Is he banging his head? No, he's being a goofball and trying to play the piano with his nose. I so wish I could enjoy all those little goofy things without wondering if it's a symptom I need to catch.
I want to ignore all of this and close my eyes and make it go away. But I've tried, it won't go away. I realize that there are a lot worse things than this and I don't want to come off as a whiner. I'm really not a whiner! But every time I sit in a doctor's office and I can just see in their face that they don't have good news it brings me right back to that day and I feel the EXACT same emotions.
Tomorrow I will get up and I will play with my baby. I will clean up his messes, I will try to get him to do the sign for "more" instead of whining and wildly waving his arms, I will read him books, I will tickle him, life will go on and I'll enjoy every minute of it. I won't feel sorry for Lewis or myself. But for just one night, I need a little time to be a little sad. And that's ok.
Last year Coleman got me a Nook for Mother's Day... Pre-mother's Day, actually, since I was still pregnant. It came in very handy for both of us (Coleman hijacked it for a while) while Lewis was in the NICU. This year, I had breakfast in bed and a day full of fun with my two favorite men. I love my Nook, but it just doesn't compare ;)
Some pictures from our fun day at the Dutch Village:
Someone get this kid some sunglasses!
Coleman got weighed to make sure he didn't have hollow bones which would mean he was a warlock. In case you were wondering, he's not. The scale said he weighed 135. The dutchman: "uhh... that's not official." Yeah no kidding.
Lewis finished up his first intensive Feldenkrais session this past week. He went four days in a row and I think it really paid off. I made a couple videos of some of the changes I've seen in Lewis, I'd love for you to watch them and see if you can see the changes too. I have to warn you that the changes are VERY subtle, but they are SO IMPORTANT. These are the small details that he will build on and use to crawl and walk.
So, the first video is basically clips of Lewis army crawling and trying to rock back and forth. Pay close attention to Lewis's back, how he arches and rounds it, how his pelvis tilts, and how much his legs are involved in his movements.
Before, his body (and specifically his back) moved as a log and his legs just drug behind him. Now, his spine can twist and his pelvis can tilt and his legs play a more active role in his movements. He still has a ways go to, but these changes are huge for Lewis.
The next movie is clips of Lewis reaching. Notice what parts of his body are involved when he reaches above him.
At first, Lewis used only his arm to reach above him. It got the job done. But look how, in the second part, he uses his arm, his neck, his back, and even his pelvis, to reach above him. He can reach so much higher! This may not seem like a big deal, but it will help Lewis so much to be able to effectively use every muscle he can. Think how much easier he'll be able to 4-point crawl if he can twist his spine, tilt his pelvis, and use his entire back to move his arm forward, instead of just using his arm.
I know it doesn't look like much, but these are building blocks for Lewis. I'm so excited to be able to share Lewis's hard work and progress with all of you.
In the beginning it was how Lewis and I bonded. It was how Lewis went from being the baby I visited in the hospital to MY baby. Later on, it was our time to spend some time relaxing. And, towards the end, when my little baby became a boy on the move, it was a way to keep him still so I could snuggle and pretend he's not growing up way too fast.
Sure, nursing was inconvenient at times, I couldn't be away from Lewis for more than a few hours at a time. But it was 100% worth it and I wouldn't trade it for the world.
And then he just stopped. I saw it coming for a few weeks. He dropped a feeding every few days... he'd just refuse. The only one left was first thing in the morning. And then it was gone. And I'm one sad mommy :(
All this is taking us one step closer to the big day... Somebody's got a birthday coming up and it CANNOT be my itty bitty newborn baby, can it??
It feels like Lewis has a new trick every day. He's been giving kisses for a while now. At first I had no idea why he was banging his face against my face with his mouth wide open, but I finally figured out he was giving me kisses! I don't even know why I wear makeup anymore because he kisses it off my entire face by the end of the day. I love it! We snapped a few pictures over the weekend while we were doing yardwork and Lewis was playing in the yard. I wanted some smiles but Lewis had other plans...
A couple new things to report. First of all, on May 9 Lewis goes in a for a baseline brain/spine MRI. Lewis's neurosurgeon would just like to see what his brain and spine look like while he's healthy and happy so that he'll have something with which to compare future MRIs. He'll need to be sedated for the procedure and won't be able to eat or drink that morning until the procedure. It shouldn't be a big deal but it's definitely not something I'm looking forward to. We'd appreciate your prayers.
On to more exciting news, Lewis is showing great progress with his Feldenkrais therapy. He's currently going once a week. His therapist thinks that he would really benefit from a more intense series of lessons so next week we will go for four days in a row. After that we'll probably take a week off and go back for another four lessons. I'm so excited to see where this takes Lewis! A lot of trips to Grand Rapids, perfectly timed with the climbing gas prices, but it will be worth it! I can't wait to update you all after next week.
Well we've gone to the Feldenkrais therapy three times now and I. LOVE. IT. It's really exciting to see the changes Lewis has made in such a short time. The changes are very subtle but they are definitely there. Today we went to the CLC for the first time since he started the therapy. Lewis's conductor was amazed at how much he's changed in just two weeks. She kept saying, "Look at his back! Look how good he looks. He looks amazing! I can't believe how much he's improved!" So I finally broke the news to her that Lewis had been getting Feldenkrais therapy. She said that Peto (the man that founded conductive education) and Feldenkrais actually worked together. In fact, Peto even mentions Feldenkrais in his book. So the two philosophies work really well together. She also explained how we can effectively use the two therapies together. Feldenkrais connects Lewis's brain with all the individual parts of his body and muscles. Conductive Ed shows Lewis what he can DO with those new connections. I think that's critical for Lewis since he wouldn't necessarily be able to do that by himself like a typical kid. He just needs a little extra direction and practice. I am so excited to see where this takes Lewis!
Lewis's Feldenkrais therapist doesn't think he has much awareness of his knees. So the goal is to get him to see his knees, touch them, see what they feel like, how they bend, etc. So I thought I'd make them a little more interesting by drawing smiley faces on them. He loved it! Stickers worked well too.
What is that at the end of my leg?
I have two of them?!
How did I not know these were here?
P.S. Our insurance is not fond of either of these therapies, but thanks to so many generous friends and family members, we're able to afford to pay out-of-pocket for Lewis to get the therapy that he needs. We're so grateful!
For some people, it's urology. The appointment that makes them break out in a cold sweat. For me, it's orthopedics. I'm not sure why. Maybe because bad news at orthopedics means surgeries. And I feel like his bones could be seriously messed up and we'd never know it. But... no need to worry today! Lewis had a hip ultrasound six months ago that looked good and today he had a quick X-ray of his hips. They look good, but it will be something that we'll always have to monitor. The muscles in his hips are weak, so there's not much to keep his hips in their sockets. The fact that he does move his hips really helps, so hopefully it will never be an issue. We'll go back every six months until he's two and about every year from then on out, unless something comes up. The doctor also wrote a prescription for an AFO for Lewis's right foot that he'll only wear at night. Since Lewis can pull that foot up, the AFO will pull his foot down while he's sleeping to make sure his foot develops normally and won't need surgery in the future. We also found out Lewis's doctor will be moving out of state so we'll see a different doctor at our next appointment. I was a little disappointed because I've been happy with this doctor, but I've heard good things about the other doctor as well, so hopefully we like him just as much.
After orthopedics, it was time to go swimming! Lewis was a little tired from all the running around, but you'd never know it unless you know Lewis. He was happy and smiling and talking, he just wouldn't do what we wanted him to do! In aquatherapy, Lewis works on trunk strength, balance, and aligning his spine. Sometimes he's on a noodle, sometimes a kickboard, and sometimes Miss Laura just holds him. He LOVES it. He splashes and plays and thinks it's the best game ever. And most of the time, he tries really hard and uses his muscles to correct his balance and sit up straight. Then there are days like today where he splashes and plays and does NOT use his muscles. He's just a noodle! Really, I'm probably exaggerating... he did really well most of the time, but after a while, he just wanted to play around in his own personal super-sized bathtub. Who can blame him?!
Lately it seems I have lots and lots of pictures of Lewis eating. I guess it's because it's pretty much the only time he sits still lately. Plus I pull him in front of our bay window when he eats so he can look outside, and it's great light for picture-taking. So I just thought I'd share a few with you.
And here he is scarfing down some yogurt puffs. It's ridiculous how fast he eats these things!