Getty Owl Foundation

Thank You Miggy!

From Kate:

Another SMA Mom mentioned a while back about a blog called This Little Miggy Stayed Home. Thank you Erin. 🙂

Miggy writes about her family, her two beautiful girls, art, and “anything that strikes her fancy.” Her Friday posts are dedicated to spotlighting children with special needs. I thought this would be a positive way to introduce her readers to Miss Getty, show some light on SMA, and give a mom perspective on loving a child with special needs. I emailed her and she was gracious enough to interview me and select Getty as one of her February “Spotlights”. My biggest regret is that I was not able to post this earlier. Miggy my apologies.

I hope after reading the interview you continue to follow her blog and to check out all of the incredible kids and their families that have graced her Friday Spotlight.

Here is the interview.

I want to thank Miggy for the interview. There were some questions that I personally had not asked myself yet on this journey and I appreciate her ability to pull some thoughts and feelings that I think I have been sweeping under the rug.

I would encourage anyone that has a special needs child to contact her to perhaps obtain an interview, so your child can get a Friday Spotlight. She was very personable and I enjoyed working with her.

Thank you again Miggy.

Our Little Artist and Operation Duck Pond

From Kate:

Before we moved, Mark and I put together some non-negotiables of what we needed in a house.Here was our list.

1. Space

2. 2 Bathrooms

3. Space

4. Space

Our old house was almost getting dangerous for Getty. The hallways and bedrooms were very narrow and getting Getty in and out of the bathroom started to become a hazard.

We came across this house in a neighboring city and just fell in love with it immediately. It covered all the items of our list perfectly. What we didn’t realize was that there were some added features to the house and to the neighborhood that made moving even more awesome.

The kitchen and dining room are kind of one and so there is tons of space for what we call Getty’s Art Corner. She has space to have a easel and a bookshelf for her books. paints and markers, etc. It is also big enough so we can have her PVC pipe gym to hold her arm slings so she can rock and roll on activities.

We try to get her up in the arm slings at lest once a day. Today she was using her markers to draw a beautiful picture.

I captured as much as a could. She is laying on her 8′ wedge in her arms slings with a marker. There is also a amplifier next to her with the mic near her mouth. We are trying to encourage her to talk more and the thinking is if she can hear herself that might encourage her to talk more.One more thing. I don’t know if this is a two year old thing, but when she sees that I am watching her do different projects she gets a little sassy, as if to say, “Mooooooooooom, stop watching!” I love it.

While we were moving into the new place, we started to realize all of the great perks in the neighborhood. 1st and foremost, there is a Target about a quarter of a mile away. Dangerous! But most importantly there is a school two blocks away. The school Getty will be going to when Pre-school comes to call. Our neighborhood also has a cool duck pond. We have hung out there many times to feed the ducks. One night Grammy and Papa came with us and we all had a great time. Some of the geese were a little more aggressive than others, but all in all I think everyone got fed. The first time we went, Getty was super quiet. We can only imagine how much she was taking everything in. And as we began to go more often, she started to chat more.

That’s Life

From Kate:

We are really starting to get back into a routine at the new place which is proving beneficial for all three of us. Getty gets two full treatments, one in the morning and then one after she wakes up from her nap around 5pm. Once Mark is home we are able to pass the baton and that gives him some special Getty and daddy time and that gives me a chance to lace up my running shoes and get in a few miles of what I would call respite.

So last night I got back from my run to be greeted by the sweet sounds of coos and Frank Sinatra. I had to go investigate and what I saw was just a beautiful moment. I had to video it. Enjoy.

And again, I apologize for the background singing. I know I can’t sing, but hey it is Sinatra, how can I resist. 🙂

Avery’s Bucket List — Avery Lynn Canahuati 11/11/11 – 04/30/12

We are deeply saddened by the sudden passing of Avery Canahauti due to complications related to Spinal Muscular Atrophy (SMA). Her parents cared for her and made strides in raising SMA awareness around the world. Our thoughts are with the Canahauti family. We hope Avery experienced love and joy through Avery’s Bucket List.

From the Great White North

From Mark:

We were thrilled to have Canadian visitors today. SM”Eh” Dad extraordinaire, Brad Fisher, and his lovely 5-year old daughter, Shira, swung by Sacramento on their way from Victoria, BC, to Disneyland.

We love meeting SMA families. Despite having never met before, other SMA families instantly feel part of our family. It just seems so natural and relaxed.

For example, after a quick tour of our new place, we ended up shooting the breeze over lunch … not at the dining table or even in the living room but … in Getty’s bedroom. We sat on Getty’s bed and in camping chairs.

We seem to have so much in common … right down to our underwear. Don’t ask.

Getty and Shira really enjoyed meeting each other. Shira was quite chatty and fell in love with the pets. An all-too-brief, yet good, time was had by all.

Thank you for stopping by and making our day! Safe travels!