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!