BE the squeaky wheel…

…gets the grease.

A few nights ago I woke up in the middle of the night with the words “Swash brace” in my mind. I quickly booted up the ipad and looked it up again, and the moment I read up on the swash brace I knew that was the answer to Nathan’s hip problems. I had mentioned the Swash to Nathan’s orthopedic doctor whom we saw about a month ago, but he said no.

So I started squeaking – I called the doctor’s office and started leaving messages. On day 3 of leaving 2 messages every day, I decided to call Nathan’s orthotist, who fitted him with the Hart Walker. I asked him about the swash brace and he was in complete agreement with me. He felt that Nathan would greatly benefit from the swash brace.

Also, the doctor had prescribed a DAFO that was fixed and had no hinge, preventing movement of the ankle and foot. I told him I didn’t agree with him at the meeting, but he insisted. So I asked Jason the orthotist about this DAFO and he once again agreed with me on making a hinged DAFO for Nathan. So I squeaked again mentioning to the doctor that Nathan’s orthotist agreed with my treatment plan. By day 5 I’d spoken with his assistant, posited my theory for using the swash and hinged dafo, and gotten an agreement from her and the orthopedic doctor.

Today, we went to see the orthotist and Nathan was measured for his SWASH brace and his hinged DAFO’s. He should be receiving both of these in 2-4 weeks. I am super excited and think this will give Nathan more freedom of movement!

Sometimes you have to be the squeaky wheel and do your own research or doctors may not make the best choices for your children.

I asked Jason the orthotist about why the doctor hadn’t devised this treatment plan, how come I figured it out even though I am not medically trained. He told me it’s because the doctors always work towards the lowest common denominator. The doctor didn’t think Nathan had any potential for movement so he simply created a treatment plan devised at keeping him stretched. He wasn’t concerned about function. He didn’t see potential for functional movement in Nathan. But I see potential in him so I am glad I have no problems being the squeaky wheel.

BE the squeaky wheel…there’s no shame in that!

More Fun

Ask God…

…for a stronger back, not a lighter load.

I saw that on a church billboard, and how it struck me.

So very very true.

We tend to ask God for life to be easy peasy and everything nice and rosy.

But I find that growth often comes from challenges.

And, most importantly, with an open heart and a faithful mind, even if we are weak when we receive our load, God helps us find strength and as we walk we become stronger and stronger.

I am so grateful for my delightful package of goodies!

Crises Averted

Nathan’s been on the verge of getting sick for the last few days. He started sounding raspy last Wednesday. By thursday he woke up a bit warm and sounding like he could possibly be sick. So we started Marcela therapy.

I went to Whole Foods and purchased some homeopathic remedies, which we started giving him every hour on the hour. Then we started using our sinus cleanse to wash out his nostrils. We mega dosed him on Emergen-C to increase his vitamin C levels. We rubbed a natural vap-rub on his back and chest.

By Friday afternoon he was almost fully recovered!

Unfortunately Saturday we went out and about to Santa Monica again and on Sunday he went to Disneyland with his dad and cousing (Belle, Catalina, Cybell and I are going this week) and by the time he got back last night he was almost sick again.

Last night he woke me up with a very wet cough and a ton of phlegm in his chest, so I started his “treatment” all over again. This morning he woke up well enough to go to school.

I’m happy that so far we’ve been able to keep him from getting too sick. Later on I will round up what I’ve been using so I can write a post on my “alternative cold treatment” in case it can help your kids too!

We also went to Dr. Kenny and it became clear that most of these issues are happening to Nathan again because we’ve been cheating on his diet. When Belle was born we fell off the GFCF diet bandwagon and he’s been eating pretty much anything. We also did this to try and help him gain weight. But the result has been the opposite. Breaking the diet has made him more mucusy, which makes it harder for him to eat and swallow, and also weakends his immune system.

The conclusion – the diet is not just helpful but ESSENTIAL for Nathan’s health so we are now re-committed to it and certain that we made the right choice to begin with. I’ll keep you guys posted about how he’s doing!

Bling Bling

Do you see it?

But do you see it?

Can you see it now?

Yes, our little Belle is growing up! She got her ears pierced today!

Cybell couldn’t miss out on the jewelry fun, could she…

And while Belle grows and gets her bling bling, we all continue to have the blastest of blasts. We’ve been swimming in the mornings:

And this little one already knows how to kick…go under water…blow bubbles…

There’s nothing she doesn’t like about the water…

She loves her friend Catita, who loves her back!

And Catita and her mom are loving the warmth of an LA summer while their friends and family freeze during the coldest part of winter in Chile!

And Cata kicked and played and laughed..all by herself!

And Belle and I cheered her on

And after mornings in the pool, afternoons are for outings..

Here we are at the Santa Monica pier..

And through it all…the princess has been..well…a total princess.

And you know what I’ve learned after 4 years of motherhood and 2 kids? The most important thing is this:

Having Fun!

We are still having boatloads of fun! We’ve been to Universal Studios, the Orange County Fair, all sorts of shopping, for walks at the park, swims at our pool, and more. It’s been great having our wonderful Chilean friends with us! Here are a few pics of our adventures. Now that my hands are busy with Belle, I am a photo slacker. But you get the idea ;-)

I’m sorry I haven’t been able to update much. Between hanging out with friends and working I haven’t had much spare time. Work’s been busy lately and every spare moment we’re out and about. I have several post ideas, I’ll list them here so I don’t forget: Nathan playing on the Ipad, Our Proloquo2Go setup, Orthopedic Update, ABR and Head Control update, A day in Nathan’s life, Conversations with Nathan. I’ll try and do at least one or two of them this week! Hope everyone is doing well!

Ipad Apps

A few people have emailed asking what apps we are using for Nathan in the IPAD. Here’s our list (if you click on the pictures you’ll be taken to a page with a larger image so you can actually read the names):

Nathan gets bored pretty fast so in one “playing” session he’ll typically go through at least 5 or 6 apps. Some of his favorites are Wheels on the Bus, Magic Piano, I hear Ewe, the books (Toy Story, Shrek, How to train my dragon), plus he enjoys most of the flash card apps.

I would love it if you could share some of your favorite apps!

Happy 4th Birthday Nathan!

4 years ago we were told not to expect 1 breath from you. We were told you’d be born dead and if you lived we’d experience nothing but regret and sorrow. Oh how wrong they were! I wonder how many breaths you’ve taken by now? And every one of your breaths we are so grateful for.

Thank you for defying all odds. Thank you for bringing such joy to our lives. Thank you for being the greatest teacher we’ve ever had. Thank you for spreading happiness to all who meet and know you. Thank you for your example of serenity, strength, and grace.

Happy 4th birthday my Nathan, I hope this is just another of many many many more years to come! We love you so much, you are perfect in our eyes, and we wouldn’t change a thing about our lives with you.

Downtown Disney Aug 2010

On the way home from Carlsbad we stopped at Downtown Disney, and Catita and Belle got their first Build-a-Bear:

Carlsbad Aug 2010

We had a blast at the beach. It was a great time for everyone. Nathan went swimming every single day in the very cold water and couldn’t have been happier. Cybell and Cata enjoyed relaxing at the beach too!

SeaWorld Aug 2010


Falling asleep in a small tent cuddled with your man, with 2 little ones gently snoring next to you, your dear friend and her beautiful daughter steps away in the RV, your dogs in a tent next to you, all lulled by the gentle ebb and flow of the ocean…priceless.