Wednesday, March 23, 2011

Going Swimming

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?! 





Saturday, March 19, 2011

Happy Eating!

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!


Wednesday, March 16, 2011

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.

Tuesday, March 15, 2011

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!


Friday, March 11, 2011

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!


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