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Whatcha Been Up To?

From Kate:

This Spring has brought a very busy little missy. As Getty gets older it seems as though more opportunities come her way. Pre-school, reading, talking, movies, ocean trip, swinging, power chairing, and everything but the kitchen sink.

Here is what we know she loves:

Pre-school: She loves the interaction and direct instruction with her teacher at home. She also loves the interaction she gets with the kids at her virtual school. Her vocabulary is increasing. When Getty speaks, she will use her syllables to make words. She is doing so great at it and it is helping her teachers understand her needs and/or to let them know how smart she is. Her eye gaze is grand. There is always choice in her instruction and Getty is really great at everything she does. She understands patterns, colors, letters, numbers, her environment, bugs, animals, etc. Every book that is read to her, she is locked in like glue. She is a great listener and she is patient when she wants to be. ūüôā Getty loves music and loves to listen to songs.

She goes into her virtual classroom everyday to see the kids and gather some social interaction with her class. The kids are very cute. They announce “Getty’s here!” and they offer copious amounts of hellos and then goodbyes at the end of the day. We stay for about 30 minutes to listen to story time or an activity during circle time. Next year the amount of time and the activities will be longer and more interactive. This year has definitely been a learning year for her teachers and myself. So next year we can all hit the ground running make the virtual aspect of Getty’s learning awesome.

Getty got to take part in her first “picture day”. It was so awesome to dress her up and take school pictures and a class picture. The kids were so excited to see her and the light beamed from her eyes. We think she thought the experience was pretty cool. Pictures just came back and she is just as sweet in print as she is in person. We are so glad that she was able to take part and have that real life school experience and so thankful that she had time to hang out with her classroom friends.

I am so thankful for Getty’s school district to offer direct instruction and virtual for her. It is helping her learn and grow leaps and bounds. I have really enjoyed the relationships that she has created with not only the kids in classroom but her teachers in and out of the house. They have all been so kind and generous with their time and love. Getty loves all of them and I enjoy more than anything to sit back behind them and watch each teacher interact with Getty. They have their special time together and it makes this mom’s heart warm.

The end of the year is coming soon and then she will hit the books again and have four weeks of summer school. I enrolled Getty into Zoo School as well. The Sacramento Zoo has a great pre-school program throughout the weeks of summer and Getty will be a certified Little Duckling. Can that sound any cuter? So excited for her to have new experiences and to meet new people.

Out and About: It has been difficult this spring to get out and explore, so most of our activities have been at home. We were able to get away briefly to Bodega Bay. Again brief, but memorable. We braved the wind and found a quiet spot at the beach. Cooper came along as well. The trip was fun. I hope that we can sneak in a few trips before summer is out.

Traveling is not easy. I guess I will just leave it at that. I will say this, it is not just throwing a couple pieces of luggage into a van and heading out. It is packing a small hospital and then some into a van. ūüôā Not easy but it will never deter us from exploring.

Home Fun: A lot of the fun has been at home. We have tried very hard to make Getty’s environment interactive and fun at home. Since most of our time is under this roof, heck we need to have a blast. Getty has been rockin it in her power chair. She is doing a great job of moving left and right. I have not given her the power to move forward yet. Getty will be fitted for her custom headrest soon and when that happens I will be more than willing to give her the keys to the forward switch. I have been playing games with her to make sure she knows when to stop and when to go. She is getting really good at it, however in pure 4 year old form, she will listen when she wants. When she decides not to listen I take a reward sticker away. She always gives me a grunt and look at me as if to say, “hey give that back!” A conversation ensues about why I took the sticker and how she needs to listen to me. Most of the time she will correct her behavior and sometimes she will literally turn and keep turning and not stop and giggle as she rebels again. I love her spunk!

We play dress up, we sing songs, we read books. We have started to read her higher level books for the sake of broadening her vocabulary and imagination. Last year I tried several times to see what she would do if she had to listen to a book without pictures. Ummm she didn’t like it. So I tried again this year and she loved it. Her attention to the story was amazing to experience.

So far we have read:

Charlotte’s Web

James and the Giant Peach

Matilda

I think I have purchased all of Roald Dahl’s books so far. She loves the silly stories. I incorporated each book with paper puppets of each character. I thought while they speak, Getty might enjoy seeing them talk. Perhaps that would help enhance her experience and interest. So far so good. I have failed to put up the Matilda as she was speaking one day and Getty growled at me like a tiger. So I don’t make that mistake anymore. Hehe!

She loves reading and listening to books. So proud of her.

She plays with bubbles, she paints, she giggles, she bakes and now she swings. A great friend made Getty her own custom swing. She lays flat and swings to her heart’s content. It is very cool and it is just one more aspect of making home a place of absolute delight.

Next up for this spring/summer:

Baseball

Accessible Playground

More bird watching. Another birder in the house, yahoo!

Get going in the jogging stroller

Go to a Sacramento Republic soccer game

World Cup 2014-Watch and cheer on USA and England!!!!!

Books, books, books!

 

Overall: Getty’s health has remained rockin! She has been on bi–pap a bit more than before. The good thing is that it is out of germ necessity, not diminishing lung capacity. Diet is spot on and going well. Minor tweaks here and there. Her blood work is staying within average ranges. We are simply blessed to have such a happy kiddo who continues to kick SMA in a beeeeehind!

She is a little over 37 pounds and over 43 inches. We call her Getty, Spaghetti, Goosie, Chicken Soup, Babe, Little Lady and now our little Beast. ūüôā

We are so proud of our little owl! You keep hooting and hollering and fighting SMA. So far Getty, you are doing a bang up job and showing SMA that you are living and loving life regardless of diagnosis.

 

I have been reading Getty Shel Silverstein lately and I came across a poem that I know I read as a child, but it serves such an amazing purpose now. I think it helps put so many things in perspective in our new normal.

 

Listen To The Mustn’ts

Listen to the MUSTN’TS, child

Listen to the DON’TS

Listen to the SHOULDN’TS

The IMPOSSIBLES, the WONT”S

Listen to the NEVER HAVES

Then listen close to me-

Anything can happen, child

ANYTHING can be.

I truly feel like Getty gets that. She knows that life is worth living and it is pretty cool. We love it as well.

 

Getty 2

Getty

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Memorial Day

From Mark:

We always honor SMA warriors: children, families, friends, and allies determined to fight spinal muscular atrophy, the #1 generic killer of young children. They soldier daily to provide a quality of life that would be impossible otherwise. Sadly, far too many SMA warriors fall and suffer years of potential life lost.

Today, we honor fallen soldiers who paid the ultimate sacrifice to defend our nation and help bring about a more perfect union. They pledged their lives, fortunes, and sacred honor to deliver liberty and prosperity to our land.

Through their loss, society as a whole gains. People advance themselves, their families, their careers, and the lives of others in peace thanks to the soldiers enabling it all.

In our world, Getty and other SMA families have their immediate medical and nutritional needs met through medical advances in clinical care as scientists toil for a viable SMA treatment or cure. We thank them for their work and sacrifices and the more fundamental work and sacrifices of the soldiers who created the environment in which these advances can occur.

We also pay special homage to Getty’s cousin Travis Woods, who paid the ultimate sacrifice in this cause. We love and miss Travis dearly and know he would be just as proud of Getty as we are of him. He is our special hero.

We remember. Thank you.

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SF Marathon is 95% full, but there is still time to sign up to be a TEAM GETTY Runner!

From Kate:

I just got notified by the SF Marathon that the registration of the race is 95% full. However for anyone interested in being a part of our TEAM GETTY runners, you are in luck! We have some space left for you.

Here are all the details:

Date: July 27th, 2014

Where: San Francisco, California

Distance: Half Marathon and Marathon 

Price: Marathon $165

            Half Marathon $120 

Registration: Is through Getty Owl Foundation,  NOT the official SF Marathon website. So please call us at 916-476-3977 or email us at hoot@gettyowl.org 

What to wear?: TEAM GETTY tech shirts are complimentary to all team members and they are RAD! 

 

So if you are interested or you know someone interested, spread the good word. Our team is getting bigger as the days get closer to race day. It feels great to know we will have some great Getty Owl Foundation presence on race day. I cannot wait to be a part of this great day.

 

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Happy Mother’s Day

From Mark:

I want to give a shout out to all moms. You care for, love, and protect your little ones with all your hearts.

I give a hearty shout out to all moms of special needs kiddos and especially SMA moms. You are loving warriors, tender and caring toward your babies and mama bears to anyone who dares come between your child and his or her needs.

We try to give people here a little window into this life. There’s no shortage of hardships and sweet victories along the way. The things shared here are snapshots though. They are telling, but so much of what it means to be an SMA mom can never be adequately relayed.

The depth and breadth of love SMA moms breathe into our kiddos is stunning and immeasurable. The amount of will and fight of SMA moms knows no bounds when such a medically fragile child depends on you for just about EVERYTHING.

SMA dads are awesome as well, but the bond of SMA mom and kiddo is somehow uniquely magic.

I offer big hugs and appreciation for all the SMA moms, special needs moms, and moms in general. Thank you for your special kind of love.

I appreciate every hoot, coo, and smile Getty makes. I appreciate all the hard work and exhaustion that enables her to be so happy and fulfilled every day. I appreciate that I am able to spend a full day away at work with the peace of mind that Getty is loved and couldn’t be in better hands.

HAPPY MOTHER’S DAY!

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Gene Therapy Clinical Trials Begin – Cure SMA

From Mark:

We are elated that Dr. Brian Kaspar’s Spinal Muscular Atrophy (SMA) Gene Therapy program at Nationwide Children’s Hospital is¬†starting clinical trials!

SMA may be the #1 genetic killer of young children, but it is also the #1 disorder closest to treatment or cure of over 600 neurological disorders. Researchers attack SMA on various fronts, and they need funding to make it happen.

That’s were we come in. Actually, that’s where YOU come in.

Getty Owl Foundation has been a proud supporter of the Gene Therapy program from Day One. The research is amazing and offers the best hope for a CURE for our SMA kiddos and all those affected by SMA.

You know that Getty Owl Run/Walk we do every year? It has raises tens of thousands of dollars to advance the Gene Therapy program. We have done craft fairs, art auctions, scavenger hunts, booth events, album sales, contests, etc., and most of the money raised from all of it has gone to advance Gene Therapy. The program is that good, and it wouldn’t be possible without YOU chipping in your hard earned dollars, time, and effort¬†for the cause and businesses forging amazing partnerships with us.

Simply put, the goal of Gene Therapy is to give a single bloodline injection to an SMA child. This injection delivers¬†to the body the one missing gene that SMA kids don’t have. The gene travels by piggy-backing on a special virus. That virus can deliver the genetic cargo to the right place: the cells in the spinal cord that send messages from the brain to the muscles.¬†The new gene makes these cells work the way they should. Signals will get through from the brain to the muscles,¬†and … voila … bye-bye SMA …

FOREVER!

Phase 1 of the clinical trial will focus on safety. The trial is open to the following children:

  • SMA Type 1
  • Age nine months or younger at the day of injection
  • Bi-allec SMN1 gene mutations with 2 copies of SMN2
  • Onset of SMA before age 6 months
  • Hypotonia with delay in motor skills, poor head control, round shoulder posture, and hypermobility of joints

For exclusion criteria and more information CLICK HERE.

Meanwhile, Getty Owl Foundation will continue its work advancing research, helping SMA families, and raising SMA awareness.

Helping families. Fighting SMA.

It’s what we do.

 

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