New Toy

It's winter here in Michigan and that means we're stuck in the house. It's not even a pretty white winter this year. The snow keeps melting and turning brown so we can't even go out and play in it. Although I'm not really complaining about that. I hate going out in the cold and I tried to take Lewis out in the snow a couple times with mildly disastrous results... let me just say he was not a fan. I said in an earlier post that we've switched up our schedule a little. We'll have a couple weeks that are busy busy busy with therapy. Then the next week we're at home. All. Day. Long. Have you ever been home all day long with a 19 month old? Then you know what I'm talking about. So I've been looking for things to do to get us out of the house. Or at least give us something new to do inside the house. There's a toddler storytime at the library that we've never been able to attend because of therapy. We've gone for two weeks now and, quite honestly, I'd much rather stay home in my little bubble. The actual storytime is nice and just involves reading a book and singing a few songs. The other moms are equally un-showered still-pajamad, so I'm in good company. The first week I straightened my hair, got dressed in real clothes and everything because, let's be honest, I don't get out much and I ended up being totally over-dressed... ha! Anyway, so I'm having a hard time figuring out how to be normal in public. Like I don't want to go out and announce to strangers that Lewis has SB and he gets around by army crawling but that he can participate just like the other kids. But if I don't say anything, people are afraid to ask and just look at us like we're hiding something or are embarrassed by something. Which we're not. And then people try to be really nice and accommodating so they are super helpful. There's nothing wrong with that. Like when all the kids go get shakers out of a bucket, the lady comes over to Lewis so he can get his shaker. That is great and very thoughtful. But Lewis is perfectly capable of going and getting his own shaker. It might take him a minute longer but I want him to have the opportunity to do it himself! Then all the kids go play at the train table. I pull up a chair and sit Lewis up to the table. I have to sit right next to him because he has to sit right on the edge of the chair and  he slides off of it easily. Also the trains have magnets in them so I'm kind of paranoid he (or another kid) will put it on his shunt and reprogram it. I'm sure I look like a helicopter mom, but I'm really not! Are you starting to see why my bubble is so alluring? Are there any wheelchair accessible islands for sale out there? Anyone want to come with me?

Anyway, so other than storytime, I've had our Early On PT come to the house every week. She had only been coming once a month, but this year I have her come on our empty weeks to just give us something different to do. Lewis gets an hour of attention and I get an hour of adult conversation, so it's good for both of us! Lately she's been asking a lot about whether Lewis is doing any weight bearing. I explain every time that Lewis is getting weight bearing in his upper legs through kneeling and in his lower legs through sitting on something with his feet flat on the ground. I explain that we're trying to do a natural progression of gross motor development with Lewis. So, basically we want to focus on crawling, pulling to kneeling, pulling to stand, walking, etc. in that order. I don't think there's anything wrong with doing it out of order, we've just decided to commit to this plan with Lewis. I explain all of this to her and she goes on to tell me that she doesn't believe in that natural progression because she has a kid with CP who can't sit independently but who just learned to walk in a gait trainer. I don't see how that's functional, but I kept my mouth shut. I told her that was great and I'm sure his parents were excited. It is great. And I would be thrilled if that were my kid! But I never said it was impossible to do it out of order. I just have done a lot of research and I really think that this is what's best for Lewis. I realize it's different and different is sometimes uncomfortable. But I'm so freaking excited about it that I feel like I should be announcing it on street corners or something! It's frustrating that she thinks I'm crazy when I feel like I've discovered the holy grail! And I, so very badly, want others to benefit from it too! That's why it's so wonderful to have a local SB group to bounce ideas off of. I don't have to be the one to discover the next holy grail in therapy or bowel management or whatever else comes up! I don't have to try everything with Lewis because someone else will try it for us and report back! It's great because we're all trying different things and we can all share our triumphs and our struggles. Have I made it clear enough yet how much I love my SB moms?! I would be running around like a chicken with my head cut off if not for them! 

ANYWAY.... I've gotten so off-subject it's getting ridiculous. So Lewis's Early On PT brought him a new toy and I'm super excited about it because it gives us something fun to do in the house this winter! It's not really functional for mobility, it's just more of a toy. Like the Lewis equivalent of a cozy coupe. (Side note: have you ever heard the story about how Coleman "filled up" the gas tank of his cozy coupe when  he was a kid?? I'll let you use your imagination and you're probably right...) So anyway, Lewis's favorite way to play with it is to run over Gauge... of course! We tell him to sit there so Lewis can run into him. He's such a good dog! This video was after Lewis had been in it for a grand total of ten minutes. He gets really frustrated when he gets stuck somewhere (which is every ten seconds) but he's getting better at steering and backing up.

So that's what's been going on around here. Next week we start a two week session at the CLC so we'll be busy busy busy! I'll post an update about that after the session. Hope you're staying warm! I'm counting the days till spring!

P.S. People have been saying lately that Lewis looks much older than 19 months. What are they talking about? He looks like a newborn baby to me! Someone even said he looked like he was over 2. 2?!?!?! I almost cried!

New Toy

It's winter here in Michigan and that means we're stuck in the house. It's not even a pretty white winter this year. The snow keeps melting and turning brown so we can't even go out and play in it. Although I'm not really complaining about that. I hate going out in the cold and I tried to take Lewis out in the snow a couple times with mildly disastrous results... let me just say he was not a fan. I said in an earlier post that we've switched up our schedule a little. We'll have a couple weeks that are busy busy busy with therapy. Then the next week we're at home. All. Day. Long. Have you ever been home all day long with a 19 month old? Then you know what I'm talking about. So I've been looking for things to do to get us out of the house. Or at least give us something new to do inside the house. There's a toddler storytime at the library that we've never been able to attend because of therapy. We've gone for two weeks now and, quite honestly, I'd much rather stay home in my little bubble. The actual storytime is nice and just involves reading a book and singing a few songs. The other moms are equally un-showered still-pajamad, so I'm in good company. The first week I straightened my hair, got dressed in real clothes and everything because, let's be honest, I don't get out much and I ended up being totally over-dressed... ha! Anyway, so I'm having a hard time figuring out how to be normal in public. Like I don't want to go out and announce to strangers that Lewis has SB and he gets around by army crawling but that he can participate just like the other kids. But if I don't say anything, people are afraid to ask and just look at us like we're hiding something or are embarrassed by something. Which we're not. And then people try to be really nice and accommodating so they are super helpful. There's nothing wrong with that. Like when all the kids go get shakers out of a bucket, the lady comes over to Lewis so he can get his shaker. That is great and very thoughtful. But Lewis is perfectly capable of going and getting his own shaker. It might take him a minute longer but I want him to have the opportunity to do it himself! Then all the kids go play at the train table. I pull up a chair and sit Lewis up to the table. I have to sit right next to him because he has to sit right on the edge of the chair and  he slides off of it easily. Also the trains have magnets in them so I'm kind of paranoid he (or another kid) will put it on his shunt and reprogram it. I'm sure I look like a helicopter mom, but I'm really not! Are you starting to see why my bubble is so alluring? Are there any wheelchair accessible islands for sale out there? Anyone want to come with me? 

Anyway, so other than storytime, I've had our Early On PT come to the house every week. She had only been coming once a month, but this year I have her come on our empty weeks to just give us something different to do. Lewis gets an hour of attention and I get an hour of adult conversation, so it's good for both of us! Lately she's been asking a lot about whether Lewis is doing any weight bearing. I explain every time that Lewis is getting weight bearing in his upper legs through kneeling and in his lower legs through sitting on something with his feet flat on the ground. I explain that we're trying to do a natural progression of gross motor development with Lewis. So, basically we want to focus on crawling, pulling to kneeling, pulling to stand, walking, etc. in that order. I don't think there's anything wrong with doing it out of order, we've just decided to commit to this plan with Lewis. I explain all of this to her and she goes on to tell me that she doesn't believe in that natural progression because she has a kid with CP who can't sit independently but who just learned to walk in a gait trainer. I don't see how that's functional, but I kept my mouth shut. I told her that was great and I'm sure his parents were excited. It is great. And I would be thrilled if that were my kid! But I never said it was impossible to do it out of order. I just have done a lot of research and I really think that this is what's best for Lewis. I realize it's different and different is sometimes uncomfortable. But I'm so freaking excited about it that I feel like I should be announcing it on street corners or something! It's frustrating that she thinks I'm crazy when I feel like I've discovered the holy grail! And I, so very badly, want others to benefit from it too! That's why it's so wonderful to have a local SB group to bounce ideas off of. I don't have to be the one to discover the next holy grail in therapy or bowel management or whatever else comes up! I don't have to try everything with Lewis because someone else will try it for us and report back! It's great because we're all trying different things and we can all share our triumphs and our struggles. Have I made it clear enough yet how much I love my SB moms?! I would be running around like a chicken with my head cut off if not for them! 

ANYWAY.... I've gotten so off-subject it's getting ridiculous. So Lewis's Early On PT brought him a new toy and I'm super excited about it because it gives us something fun to do in the house this winter! It's not really functional for mobility, it's just more of a toy. Like the Lewis equivalent of a cozy coupe. (Side note: have you ever heard the story about how Coleman "filled up" the gas tank of his cozy coupe when  he was a kid?? I'll let you use your imagination and you're probably right...) So anyway, Lewis's favorite way to play with it is to run over Gauge... of course! We tell him to sit there so Lewis can run into him. He's such a good dog! This video was after Lewis had been in it for a grand total of ten minutes. He gets really frustrated when he gets stuck somewhere (which is every ten seconds) but he's getting better at steering and backing up.

So that's what's been going on around here. Next week we start a two week session at the CLC so we'll be busy busy busy! I'll post an update about that after the session. Hope you're staying warm! And if you live in the south, please go run outside barefoot for me. I'm counting the days till spring!

P.S. People have been saying lately that Lewis looks much older than 19 months. What are they talking about? He looks like a newborn baby to me! Someone even said he looked like he was over 2. 2?!?!?! I almost cried!

Happy New Year!

I admit it's been far too long since I updated. You know how this season can get! I haven't really done a good update in a while so I'll go over the highlights of the last few months.

Back in November, Lewis has an MRI to see how his nasty syrinx was behaving. He had an MRI six months prior that showed a rather large syrinx and we were told he would probably need surgery. Fast forward to November, and I was a nervous wreck! We spent a very long day at the hospital and Dr. Foody's office. We even made it into the background of a Helen DeVos Children's Hospital commercial which I just started seeing on TV! The news we got from Dr. Foody was nothing short of a miracle! Lewis's syrinx, Chiari, and tethered cord are all considered stable and Dr. Foody even said it looks "great." He doesn't need another MRI (or even an office visit) for a whole year! The best news, though, came when I asked for the MRI report to be sent to me. Reading it, I discovered that his syrinx shrunk. IT SHRUNK. I felt like an enourmous weight was lifted off my shoulders. This doesn't mean that it will never be an issue and he will never need surgery. But the longer we can delay it, the better!

Therapy has been going great. I partially attribute the syrinx shrinkage to the therapy we're doing with Lewis. It focuses so much on the spine and he's moving around his spine so much better than he was at the last MRI. We've been going twice a week and I've loved the routine of that schedule. This year we'll be trying out a new schedule where we go four times in a week then take 3 weeks off. I'm excited to see how Lewis does with the more intense four days in a row. Honestly, though, I'm going to miss going for the three weeks off. Hopefully the time off will give him time to play with his new movement. Here's a video from therapy. You can see he hates it. (yeah right!) He loves it. I swear he thinks we go there just so he can play. 

In February we'll be returning to the Conductive Learning Center for a two week session for kids with SB. He'll be there 3 hours a day, 5 days a week. That seems like a lot for a then-20-month-old but hopefully he'll surprise us all. I'm excited for the people at the CLC to see Lewis after all this time and the progress that he has made. They'll also focus on potty-time. We've already started a potty-time routine for Lewis and I'm looking forward to hearing what sort of recommendations they can give.  Honestly, though, I'm most excited for him to hang out with his buddies for two weeks while I get to hang out with their moms! :)

Lewis figured out a new trick a few weeks ago. For so long he's been ridiculously close to getting into sitting on his own. Then all of a sudden  he just did it. The day before had been really great in therapy and I think it was just what he needed! It's frustrating, though, because with our hardwood floors he just slides all over the place and it's hard for him to do it. He mainly does it on a couple rugs we have in our house, although I've seen him do it on the wood too. I know he'll get better and better at it over time. Here's the only video I've been able to get of him in action. Yes, I bribed him with the video camera. Clearly, it worked.

We had an awesome Christmas this year! Coleman's family came a few days before Christmas and mine came up as soon as they left. It was GREAT to be able to stay home for a holiday! We love visiting everyone in Illinois but we leave exhausted, so it was nice to be able to stay home and just hang out for once. Lewis got sick and was teething all at the same time, but was remarkably happy anyway. I'm sure it helped that there were plenty of people around to play with him and a lot of new toys to discover. Coleman got sick a few days later so the majority of his time off was spent either being sick or taking care of a sick kid. We enjoyed the time off anyway, and I'm really thankful I never caught what was going around.

And I'll leave you with a video of Lewis's favorite form of entertainment these days. Who needs TV?!

Happy New Year!

Popeye

Yep, Lewis is a regular Popeye these days! See the resemblance?

Seriously, this kid has crazy upper body strength. Here's an example. And it also serves to remind me how, no matter what challenges Lewis faces, he will find a way to overcome them.

Crawling down...

...and back up!

Too busy eating to talk...

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!

Crawling forward

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.

Favorites

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!

Appointment review and a rant... or two

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.

Me: Ok.

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!

mmmmm....

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. ;)

15 Months

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! :)

Hiding... as usual... from anyone and everyone! 

P.S. The spider is still on the loose...

Future Rockstar

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!)

And some sweet sound effects.

Of course, I think he's a rockstar already ;)

Sad Lewis

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!

Lewis lately

I just wanted to share some videos of a few things Lewis has been up to recently.

He loves his bath time and bath toys 

He's learning his body parts. So far he knows belly and feet. 

He also knows mommy's nose and daddy's nose but hasn't quite figured out how to locate his own.

He's also learning to share..... his food with Gauge. 

Lewis thinks it's hilarious and Gauge thinks he won the lottery.

This summer so far...

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 

SO MUCH FUN!

Hope you're enjoying your summer as well!

Love, 

The Millers

Watch Out!!

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!

Cheap Entertainment

Mama?

Lewis can't get enough of his Daddy! :)

Don't mind the cracker box in his highchair. I use random things from around my house to help with positioning ;)

I hate Spina Bifida

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.

Mother's Day

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!

That's better!

 Yay!

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.

mmm... mustard

I shared my ice cream cone with my little mister

Daddy and Lewis

Such a happy Mother's Day!

Changes

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.

Happy Mother's Day!