Thursday, April 23, 2015

Ella's Run

Last year we hosted our very first 'Ella's Run' 5K Fundraiser. We were so overwhelmed with support and had such a good time.. that we've decided to make it an annual event!! 

This year we are planning the 2nd Annual Ella's Run for Saturday May 9th, 
which coincidentally also happens to be CdLS Awareness Day. :)

Our main goal with Ella's Run is to raise awareness (aka: acceptance) of CdLS-hence the correspondence with CdlS Awareness Day- and to teach others about what CdLS is and how it affects people. The more people that know and are talking about CdLS the less awkward and isolating it becomes to families dealing with it personally.

The second goal is to raise money for future CdLS Conferences-the next one being in Orlando, FL in 2016. We have had such amazing experiences at Conferences and we want to try to attend as many as possible, especially while Ella is young. We don't know what the future holds and the possibility that travel will only get more difficult as the years progress (remind me of this as I try to board an airplane with 5 small children in tow next summer..) weighs on our minds. Conferences are the absolute best place (and only really..) to be able to receive head-to-toe consultations with experts from a range of medical and educational fields, attend workshops, and connect with other families facing similar challenges. We miss seeing our CdLS family so much.. We can't wait until next summer!!

And we are very excited about our last goal-to be able to donate a portion of our proceeds back to the CdLS Foundation! The Foundation has been so good to us-from day 1 of Ella's diagnosis when our geneticist pointed out a horrid black and white picture from an outdated medical journal and told us that's what Ella had, then promptly closed it and directed us to the CdLS Foundation's website instead where pictures of kids playing and laughing popped out at us. From sending us information, answering questions, directing us to the right doctors, to always knowing our name when we call and making us feel like we're old friends. And plus.. they have a giant poster of Ella hanging in their office.. so there's that. ;) 

If you want more information on the 5K (and NO you don't have to run it) you can search Ella's Run on Facebook and join the group where you'll find registration forms. If you want to guarantee a t-shirt for the run (or just order a t-shirt!) you need to get your registration in by May 1, which is NEXT WEEK!! You can also email or message me and I can get you added to the list.

We are really excited about Ella's Run and it would mean so much to us to have a great group of people show up to support CdLS Awareness and have a lot of fun!

Wednesday, April 15, 2015

Story of my Life

I've noticed that sometimes when we're around other children people take extra precautions with Ella. They say things to their kids like "Be careful with her!" or "Don't get too rough around her." Most of the time I really do appreciate this. Ella does have a tendency to fall more easily or not be able to catch and protect herself when she does. Although sometimes I admit I just want her to be treated like 'one of the other kids'. Because.. really-she's not quite as delicate as some people think. I found a video that proves she can handle someone being a little rough with her. 
(Sorry for the terrible quality-the windows were too bright in the background! I think you can get the point though..) :)

P.S. Now that I've figured out this video this, I might just be unstoppable!!

Monday, April 13, 2015


Well, I did it you guys.. I spent 2 hours on the phone with tech support, downloaded a $40 program and figured out a way to upload and view my videos on my computer. Which left me with 257 random folders of videos that showed up on my computer in no particular order. Funny how most days I can't seem to find a few minutes to fold a basket or two of laundry, but this weekend I dedicated at least 10 hours to manually uploading, converting, and organizing every video from the past 5 1/2 years. That included staying up until 1am this morning, then Hudson conveniently waking up and screaming for another hour leaving me with about 4 hours of sleep. But that's totally ok.. you really don't need that much sleep in your 3rd trimester of pregnancy... (she says sobbing into her one cup of allotted coffee of the day)

But ANYWAYS.. before I go take a nap here is (finally!) the video of Ella's Gymnastics Recital. She did SO GOOD and I was so so so proud of her. Now, keep in mind when I say 'SO GOOD' I'm not talking about performing sequences of perfectly executed roundoffs and backbends with exquisite form. I'm talking about how far she has come this year. I'm talking about being out on the mat by herself without me there (something she barely even did in practice). I'm talking about following directions, waiting in line, not running off and doing her own thing. I'm talking about not completely freaking out at the crowd of people watching her. I'm talking about wearing a different than normal leotard (it's a big deal.. trust me). And mostly I'm talking about taking the absolute best Ella can do and totally rocking it. 

Here are a few pictures first and then the video, which of course my battery went dead during so I only got about half of it, but oh well. Better a little than nothing. And better late than never.. And uhhh.. better to always have low expectation for yourself apparently. ;)