You Never Let Go

If we met while I was pregnant, there's a good chance, I was humming this song:

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

I pretty much had it in my head the entire time. It's a great song and was a great comfort through a very hard time in my life. So you can imagine my surprise when, while on the operating table delivering Lewis, this very song came on the radio. Out of all the songs in the world...

Coincidence?

No such thing.

Why would anyone want to be a urologist?

We're coming to that time of year that's full of appointments. All the doctors wanted to see us back in 6 months, so they all end up around the same time. Today we went to see Lewis's urologist. He had an ultrasound and checkup. We found out while Lewis was in the NICU that he has bilateral reflux (grade 2/3). Basically, when his bladder contracts, some urine goes back up the ureters towards his kidneys. This puts Lewis at risk for a urinary tract infection and ultimately, kidney infection. Since we found out, he's been on daily antibiotics to keep the bacteria at bay. So far he's been UTI free, which is awesome! Typically kids usually get their first UTI by the time they're a year old. He'll still be at risk for them after that, but the risk is less. Soooooo since he's been UTI free so far, and as long as he remains UTI free for the next 3 months, the doctor said we can stop the antibiotics when Lewis is a year old! YAY!!

His kidneys looked good on the ultrasound. Kids with SB typically have small kidneys, which isn't necessarily a good thing. Lewis's are on the small side for his age. The doctor said they may be the right size for his weight, but they don't chart it that way (which makes no sense to me). Anyway, they've grown since last time, so they look healthy.

I'm glad they're keeping such a close eye on Lewis's bladder and kidney health. Not long ago, people with SB frequently died from kidney infections. But nowadays, if the doctors suspected an issue, we'd start cathing in order to keep his kidneys healthy. I'm sure we'll get there eventually, but for now we're enjoying a few more months of no cathing!

I love it when the sun starts shining in that window in the afternoon. You know what it means? 

Spring is coming! We can't wait!

New Ideas

This past weekend I had the opportunity to go to a conference about an alternative therapy for Lewis. I decided to go, hoping to get some pointers that I could incorporate into what we're already doing with Lewis. I left questioning everything I thought I knew about physical therapy.

The conference was on the Anat Baniel Method of Feldenkrais therapy. Basically, Anat focuses on the brain and its ability to learn. I could go on for hours about how the therapy works but I found this video to be helpful in understanding what it is she does. It's kind of long but I think it's worth it, if you're interested.

I've long been searching for something that focuses on training Lewis's brain. He doesn't have a muscle problem, he just doesn't have the wiring for all of his muscles. Because he doesn't explore his body the way a typical baby does, his brain doesn't get the chance to map out his body very well. A lot of conditions that kids with spina bifida are prone to develop, such as scoliosis, may be caused by the inadequate mapping of the body in the brain and pushing them to do things their body is not ready for. The ABM therapy will help Lewis to effectively and efficiently use the muscles that he has control over. We'll have to throw the development charts out the window, but that's ok with me. We haven't really worked out the logistics yet... he'll need to go to an ABM therapist who can perform movement lessons on him and can also teach me a few things I can be doing at home. It works best to do a bunch of lessons back to back and then take some time off so we're still figuring all that out, schedule-wise.

The problem is that it goes against a lot of the things we've been doing with Lewis. I think it will be easy to blend the CLC with Anat Baniel so we'll continue to attend there. Aqua-therapy will be easy to blend, so we'll keep up with that, also. Traditional PT will be a little harder... I've kind of decided that I will just treat traditional PT like going to the gym. He still needs to strengthen his muscles, so we can use it to do that. I did have to put my foot down when it comes to using the stander, though. ABM does not recommend using a stander. Lewis's PT thinks he should start using the stander right away. I've decided that he will use the stander but it doesn't make sense to push it before he can sit well independently. I don't want to put him in it before he's strong enough to handle it.

Anyway, that's the condensed version of the thinking and planning I've been doing for the past week. I really think this will pay off for Lewis, I just hope our insurance company agrees.... ugh!

I have to say, though, that my favorite part of last weekend was the car rides and lunches and chats with Katie and Kelly. When I started this journey, I never imagined that I would be walking it with such great women and friends! Spina Bifida makes me think about, wonder about, worry about, talk about, and research some pretty crazy things. Sometimes I feel like the only person in the world who thinks about these things. It's nice to talk with ladies in my position and realize, I'm definitely not in this alone.

I'll leave you with a couple videos of Lewis's new tricks:

One of Lewis's favorite new sounds

Lewis is getting pretty mobile. He can roll and army crawl and wiggle his way around but I don't think he's really figured out how to effectively use any of the above methods to get anywhere. So he just gets frustrated and ends up further away from where he wanted to be. He'll figure it out soon, I'm sure!

If You're Happy and You Know It....

Lewis has a new trick. I've been trying to get him to clap for a while now and would sing this song and clap to try to get him to do it. Then one time I just sang it without clapping and he started clapping for me. Now every time I sing it, he claps along! So cute! I'm so sorry you have to hear me sing... turn your speakers down!

Still Looking Good

Lewis had an appointment with his plastic surgeon on Monday. Just a follow-up to see how his back is healing. It lasted approximately 30 seconds, most of which was spent taking pictures of his back (and a few of him smiling). The doctor said it's looking good and he'll see us back in a year to make sure the skin continues to thicken over the wound. 

It's so funny how that incision was the bane of my existence for a good 2 months. And now I NEVER think about it. EVER! But I figured this was a good time to get some good nudie pictures. First of all to show his incision, but seriously, mainly, and most importantly, to get a good picture of that adorable hiney! :)

Things I'm in Love with...

Fuzzy white hair

And a new tooth!
(I swear it's there... it just won't ever show up in pictures!)

What's Lewis Working on This Week?

I like to take pictures and videos of pretty much everything Lewis does. I've taken a ridiculous amount of pictures of him. Going through pictures for his wedding slideshow will literally take years... he's going to need to have a long engagement. But anyway, I also like to take pictures and videos of the stuff we're working on with Lewis. When it feels like we've been working on sitting up FOREVER and every other baby just magically starts sitting up with no practice at all, it helps to go back and look at the pictures and videos and see just how hard Lewis has worked and how far he has come. So I thought I'd share something we're working on with Lewis this week!

First of all, some background. To understand one of the reasons this is difficult for Lewis, it may help to try it out yourself. So, sit on the ground with your legs crossed and lean forward so you're looking at the floor. Now, really pay attention to what muscles you're using when you sit back up. Who knew we had that many muscles, right? Can you feel your leg muscles helping to pull you back up? It's possible to do it without engaging these muscles, but you have to have a strong core and it takes some concentration. Lewis is learning to sit up without the help of those leg muscles. Yes, he can use some of his leg muscles, but they're weak and he's still learning that he can actively use them. Because this altered way of sitting up doesn't really come naturally, I've been teaching Lewis how he can use his strengths to sit up. Lewis also has some upper body weakness from being on his belly for so long, so that doesn't help matters. Anyway, here's what we're doing:

He's sitting with the crocodile behind him and some wipe refills on each side. I scoured my house looking for something that would work to put on his sides and this is the best I could come up with. He sits and plays in this position. 

Often, while he's  playing, he falls forward like this. And he's stuck. He either just stays folded like that and keeps playing or he waves his hands around in the air like in this picture and says, "Mom help! I'm stuck!" See how his arms are pulled back? That's from being on his belly for so long. Not a big deal, just something we have to work on. 

So here's where I come in. Instead of sitting him back up, I show him that if he puts his arm down and pushes up with it, he can sit up all by himself. Eventually we'll eliminate the wipe refills, but he needs them for now.

Push up! (Sorry it's blurry)

 You did it!

I've showed Lewis how to do this hundreds, if not thousands, of times. I keep reminding myself that, in any kid, they repeat a movement thousands of times before they get it. It just seems like so much more with Lewis because I have to guide him through it every time. So I get REALLY excited when I see this:

He fell forward again...

and remembered...

...he can do it all by himself!

Good job buddy!