My My My I Yi Woo! M M M My Tobii!

From Kate:

Okay I took some liberties from some lyrics from The Knack’s song, My Sharona. Fellas I hope you don’t mind. We have terrific news……..Getty was approved for the Tobii eye gaze system!

Yi Woo!

The possibilities for communication and learning are endless now for Getty. Obviously this is not the only means to which she will learn, but boy this is going to help immensely.

It has not been an easy road to obtain this piece of machinery. So in particular order I would like to thank a few organizations that made this happen. We would like to thank Kaiser for denying her immediately. You were swift to tell us that there was no way Getty would even be able to calibrate it at her age. (when she trialed it at the age of 2, she calibrated it and accessed the system immediately and rocked it!) But that is beside the point.:)

Our biggest thanks goes to both Yolo County Office of Education and CCS Yolo County. Ladies you all knew Getty had the capability and you also knew that treating Getty as an individual human being and not as a number is the right way to care for a child. I know you all love her as your own and I think that made all of the difference. The bottom line is, what is best for a child? You all collaborated so well and in certain respects, made me feel so at ease as a mother. I knew “it” was being taken care of and that I could trust it would get done. I can’t thank you all enough.

Spinal Muscular Atrophy robs a person of their muscles, faster or slower depending on the type. Getty is type 1 and she has little to no strength in her extremities. She lacks the ability to  independently care for herself or explore on her own without some kind of assistance. The other thing to remember about SMA is that cognitively, Getty is not impaired. She knows exactly what is going on, but until this point, lacks a way to express herself verbally. We cannot wait to get going on this system and can I say a little scared. She might just tell me what she thinks of me. 🙂

Think of all the very simple activities a 31 month old child can do on their own. They can explore their environment and from those simple activities they are learning independently. Emotions or medical needs perhaps can be expressed as well. Getty learns from what we teach her. She can choose between two or more things we choose for her. And even though she is learning about her environment, it is still with the aide of another. Medically can be a very scary thing as well. I would give anything for Getty to be able to tell me if her tummy is hurting or she needs something immediately. I know this system is not the golden ticket to every scenario, but I can tell you that for an SMA family a high HR can mean a whole bunch of things. Perhaps the Tobii could help narrow the medical possibilities. We will see.

There are nights that I choose to two books to read to her and she gazes at the one she wants to hear first, but there is always a lingering feeling in my gut that wonders, is she picking just to pick? Did I even pick two books she even likes? We needed this system so she could have the time to be intellectually independent and stimulated in a way perhaps Mark, her teachers, and myself aren’t quite giving her.

Medically, take last night for instance. Getty’s HR was elevated. She was whimpering. I repositioned her immediately, that didn’t fix it. I checked her temperature, that didn’t fix it. I changed her diaper, I would whimper if it mine was damp. 🙂 That didn’t fix it. I touched every part of her body to see if something hurt, that didn’t fix it. I knew she had already pooped, so we were good there. Tummy was not distended. Checked her bi-apap mask that she wears when she sleeps, no leaks. Then I put on a glove and started to rub her emerging molars. She cooed and immediately feel back to sleep as I laid by her side rubbing them till I fell asleep. Could I have turned on the Tobii system at that moment to see if she could tell me what was hurting? I am hoping it becomes a helpful hand in situations like that.

So a huge sighhhhhhh of relief and also so much excitement. It will be here soon and we cannot wait to update on her progress.

Everybody now ………..M M M My Tobii! 🙂

2nd Annual Halloween Costume Contest!

From Kate:

How on earth did it get to be October already? Since it is, that means it is time for Halloween. And Halloween means…….our 2nd Annual Halloween Costume Contest!!!!!

If you would like to see how things “went down” last year, check out these two links.

Contest

Results

We had a wonderful time receiving all of the submissions of cute kiddos in their Halloween costumes. We received submissions from kids from all over the United Sates and this year it would be so cool if we received some from around the world.

So this year we have decided to step it up a notch. The prizes we are giving away are ghoulish and also very cool.

1st Prize

$100

2nd Prize

3rd Prize

Cool huh! So here are the rules……..there are none. 🙂

All we need you to do is submit your kiddo’s picture by November 1st to hoot@gettyowl.org. After we have received all of the contestants, we will do another blog post that has a collage of all the contestants and we will announce the winners.

So all of you pirates, ghosts, princesses, and superheros, get ready to submit your Halloween pics.

Thank you in advance to everyone who participates.

If you are wondering if Getty will again adorn herself in an owl costume, I am happy say that this year we are going rouge and doing something SUPER exciting. That is the only hint I can give. 🙂

Missed Opportunities

From Kate:

Before Getty was born, I liked to think of myself as a woman in control. However when Getty got here, frankly, I was scared and my sense of control went out the window. I was realizing very quickly that this little lady was now in the drivers seat. A couple of reasons I was scared was really surfacing because I had never “done” this before and the last time I had actually been around an infant, and mind you for only moments was about 25 years ago. That was when everyone wanted a sweet baby. I was about 10 years old. 🙂 As I aged, I looked at babies with a slightly different lens. Babies became “slippery”, “loud”, “awkward”, and just overall complicated. My maternal instinct was certainly not kicking in my twenties. I had so much to do, so much to accomplish, so having  a child was not on my radar. Friends of mine started to have families and babies were included. While I was so happy for their growing families, I still wasn’t quite relating.

As I have said, I did have a lot of aspirations to take care of before I decided to have children, but honestly, the kids scared me. Children are such fragile human beings and I needed to get my head straight and secure before a child came into my life. They are the most important living beings in the world, in my opinion. They deserve immediate attention, they deserve to be nurtured and embraced in loving homes. I wanted to do this right and waiting for me was the right way.

On March 25th, 2010, Getty came into this world. After what seemed like 10+ months of pregnancy, she graced Mark and my life with an amazing smile and the eyes of a philosopher. I could not have been more overwhelmed with love and scared at the same time. “I have to do this right”, is seriously what I kept repeating as they wheeled me and sweet Getty to our recuperating room.” I waited to have her for so many reasons, she deserves everything and I need to do this right”.

Jumping into the role of mother was not as easy as I had envisioned. After reading way too much online and advice from friends, motherhood was just supposed “kick in”. Well it didn’t for me for some reason. It had nothing to do with Getty in any way. It was my inability to shut off my life prior life and realize that, “my past life will never be again.” I knew that, but I didn’t know that.

One aspect of being scared that did not go away, as much as I tried to kick into motherhood, was I continued to worry that I would somehow hurt Getty. I was so scared to drop her. Even though the % of me doing this was seriously such a crazy small chance, there was still a part of me that was so freaked I would have an accident. And then, how on earth do I explain that. So my remedy was to not hold her. I snuggled Getty, I touched her and played with her, but it was rare that I held her upright against my body. There were lots of times that I walked round the house holding her, but it was not as frequent, looking back as I would have liked. When we would walk to the park I would put her in the little baby bjorn. I loved feeling her body against mine, but again, she was so strapped in and safe, I wasn’t so anxious. I lovedwalks together. She would babble and squeal and I felt great because I could safely “hold” her.

So here we are, Getty is now an incredible two and a half. Every day that she graces us with her vivacious spirit is such a blessing. However there is one thing that will probably always eat at me as her mother.

I can’t hold Getty anymore, well literally, safely. I haven’t been able to over a year. We snuggle and she lays on my stomach with the help of Mark, but I can’t hold her anymore. I have tried different positions, but we can’t seem to get in a position that is comfortable for her and also allows us to suction her quickly. I can’t tell you how sad that makes me. I always wanted to be able to hold her on my hip or hold her with the body in front and snuggling next to mine, upright. Or to be able to throw her over my shoulder and pat her little butt. But I can’t. Because of SMA, Getty’s muscle tone is so diminished holding her in certain ways can dislocate something, it could cut off her breathing clearance, and can do harm to her.She lacks the ability to hold her body in a position by herself. So if I am concentrating on her head, her legs are dangling below her and are adding discomfort to her hips, etc.

So of course we find all kinds of different ways to “hold” her. Spooning is the best I’d have to say. Having her lean up against the side of my body is nice as well. Anything we can think of to position her close to me, while also being safe for her.

Spinal Muscular Atrophy is cruel in so many ways. The simple need to want to hold your baby upright in your arms, to protect, to comfort is pretty much impossible now.

I find it ironic that I was scared to hold her before diagnosis and I am now forced to be scared to hold her now after diagnosis.

I missed my opportunity to get all my good momma hugs in early. Had I known SMA was a part of the equation, poor Getty would have never been allowed to be out of my arms. 🙂

Externally, one might think that I grieve certain aspects of what Getty lacks the ability to do. Walking, eating, swallowing, moving independently, etc. But honestly I don’t grieve any of those things. I never have and I don’t think I will. I am pretty in tune with myself to know that. What is the point? Why would I need to add anymore anxiety of stress or sadness to this intense situation? I know Getty would sense it. Independently, Getty can’t walk or stand. Well we can  remedy that. She has a stander, a stroller and very soon a power chair. Believe me when she gets that power chair, watch out. We are so excited to give her that kind of independence. Eating has never been a loss emotionally for me either. To ensure safety and security of proper nutrients, the g-tube was the answer. No question about it.

There may be there might be some psychology behind this as well. I never saw Getty walk. It was never a part of the component to grieve.  Maybe had she walked and I saw first hand how it was taken away from her, maybe I would feel differently. We did get a chance to watch Getty eat solid food though. That is a memory we will always have. I think we tried oatmeal and it was a riot. Watching her open her mouth and swish it around and then swallow was very cute. But once the worry of her aspirating on food hit us, there was no question, she would stop eating orally. There are still days when we let her “taste” things and she really enjoys that. She really likes her toothpaste oddly enough. 🙂

My grief come in waves. Some days I feel like the most powerful mama in town, while other days I don’t feel so sturdy. I wish I could have taken advantage of my days with Getty prior to diagnosis. I wish I held her more, I wish I would have “gotten over” my fears as a new mommy and just held her more than I did. I think that will always be that one thing that will always stick with me. I can feed her, I can help her stand and walk, but I can’t hold her in the way I think we should be able to as mother and daughter.

Getty is an amazing little girl. She is so loving and so sweet to us. The other night, Getty and I laid in bed getting ready to go “neenies” and Mark came in to wish us goodnight. We both have no idea what was so funny, but she giggled for what seemed like 5 minutes straight. Just when she stopped, she would start again. Mark and I were in tears laughing with her. She has the sweetest little laugh. I think all the laughing tired her out, she was out cold soon thereafter. It is memories like that when you wish you had a video camera in EVERY room. It is memories like that, that I forget why I was grieving in the first place. We know we have tons more memories to make and we know that our giggle monster will surely replicate that at some point.

California – Quick Action to Cure!

Hey, California! Helping cure Spinal Muscular Atrophy (SMA) is a easy as copy, paste, fill, and send! Contact our senators with the email addresses and letter below. Thanks!

Click here to email Barbara Boxer

Click here to email Dianne Feinstein

Dear Senators Barbara Boxer and Dianne Feinstein:

On behalf of families like mine across California who are working to find a treatment for spinal muscular atrophy (SMA), I write to urge you to cosponsor the National Pediatric Research Network Act (S.3461 / H.R. 6163). The House of Representatives passed this important legislation with broad bi-partisan support on September 19th thanks to the leadership of Reps. McMorris Rodgers (WA) and Capps (CA). NPRNA will benefit a broad array of pediatric diseases by promoting cooperation among multiple institutions and advancing the development of new therapies while making more efficient use of scarce research dollars.

SMA is the leading genetic killer of children under the age of two. It destroys motor neurons, which regulate voluntary muscle movements such as crawling, walking, head and neck control, swallowing and breathing. Research funding for this devastating disease over the past two decades has primarily come from private organizations, bringing several life-changing therapies to the doorstep of the clinic. To address the significant challenges of implementing national clinical trials for SMA, and so many other diseases, a bipartisan group of senators, led by Sherrod Brown (D-OH) and Roger Wicker (R-MS), developed the NPRNA. We are proud that our list of cosponsors continues to grow and now includes Senators Grassley (IA), Blunt (MO), Whitehouse (RI), Begich (AK), Blumenthal (CT), and Kerry (MA).

This bill would strengthen the federal investment in pediatric research by supporting infrastructure and core services needed to support translational and clinical research for a broad array of rare pediatric disorders, such as SMA, Down Syndrome, and Duchenne Muscular Dystrophy. The NPRNA would authorize NIH to establish up to 20 pediatric research consortia throughout the nation which will be required to communicate regularly with one another in order to promote collaboration and resource sharing.

We have made tremendous progress in advancing this legislation. As the bill comes before the Senate, your cosponsorship of this bill would mean the world to families like mine across California. Thank you so much for your consideration.

YOU can ACT NOW to help cure SMA in two minutes – National Pediatric Research Network Act

From Mark:

YOU can ACT NOW to make a world of difference in as little as TWO MINUTES, to help kids with Spinal Muscular Atrophy (SMA) and other pediatric disorders. Please ask your Senators to help pass the National Pediatric Research Network Act (NPRNA) today! We provide you a sample letter at the end of this post to copy, paste, and send. Please lend your voice to kids in need and tell your friends.

SMA, the #1 genetic killer of young children, has no treatment or cure, but hope moved closer to reality as the U.S. House of Representatives passed the National Pediatric Research Network Act. (HR 6163). Only a small fraction of bills become law, so please take action to move the Act forward in the Senate today!

The Act would help advance medical research for various pediatric conditions and disorders. Those disorders specifically mentioned in the bill are SMA, Duchenne Muscular Dystrophy, Down Syndrome, and Fragile X.

The Act creates the National Pediatric Research Network through the National Institutes of Health (NIH). The network would create and fund up to 20 research groups to improve and coordinate pediatric research, design collaborative research projects, improve patient registries, conduct clinical trials, share research results, and train future researchers. The groups would consist of leading pediatric research institutions.

The goal is to ensure research for pediatric disorders, such as SMA, receive the treatments they deserve. The Act would foster a more coordinated and collaborative research effort. Instead of individual researchers working in isolation, the network would advance research with a more team-oriented approach, sharing priorities, goals, and information. The process will allow researchers to better know what other researchers are doing and have done, to build on existing medical knowledge.

Disease networks have led to medical breakthroughs in areas like childhood cancer research and childhood leukemia. Networks have improved outcomes for children born with congenital heart disease.

A lead sponsor of the bill, Representative Cathy McMorris Rodgers commented, “Too often, research into pediatric disorders has lagged behind research into other medical conditions. The time has come to take pediatric research to the next level.”

Getty Owl Foundation supports the bill, which is also endorsed by a variety of pediatric and medically-oriented organizations. In its passage, the bill enjoyed bipartisan support and moves on to the U.S. Senate.

The NIH selected SMA as the disease closest to a treatment of more than 600 neurological disorders. The bill is a great success in advancing our cause. It gives us added hope that the days of SMA are numbered and children and families affected by SMA and other pediatric disorders have a brighter future.

The National Pediatric Research Network Act is in the U.S. Senate as S. 3461. Please call and write your senators to urge them to support the bill and tell them what the bill means to you personally. We appreciate your help!

HR 6163 Hearing Video

Click Here to Contact your Senators

SAMPLE LETTER AND TALKING POINTS

Dear Senator [NAME]:

On behalf of families like mine across [STATE] who are working to find a treatment for spinal muscular atrophy (SMA), I write to urge you to cosponsor the National Pediatric Research Network Act (S.3461 / H.R. 6163). The House of Representatives passed this important legislation with broad bi-partisan support on Wednesday, September 19th thanks to the leadership of Reps. McMorris Rodgers (WA) and Capps (CA). NPRNA will benefit a broad array of pediatric diseases by promoting cooperation among multiple institutions and advancing the development of new therapies while making more efficient use of scarce research dollars.

SMA is the leading genetic killer of children under the age of two. It destroys motor neurons, which regulate voluntary muscle movements such as crawling, walking, head and neck control, swallowing and breathing. Research funding for this devastating disease over the past two decades has primarily come from private organizations, bringing several life-changing therapies to the doorstep of the clinic. To address the significant challenges of implementing national clinical trials for SMA and so many other diseases, a bipartisan group of senators, led by Sherrod Brown (D-OH) and Roger Wicker (R-MS), developed the NPRNA. We are proud that our list of cosponsors continues to grow and now includes Senators Grassley (IA), Blunt (MO), Whitehouse (RI), Begich (AK), Blumenthal (CT), and Kerry (MA).

This bill would strengthen the federal investment in pediatric research by supporting infrastructure and core services needed to support translational and clinical research for a broad array of rare pediatric disorders. The NPRNA would authorize NIH to establish up to 20 pediatric research consortia throughout the nation which will be required to communicate regularly with one another in order to promote collaboration and resource sharing.

We have made tremendous progress in advancing this legislation. As the bill comes before the Senate, your cosponsorship of this bill would mean the world to families like mine across [STATE]. Thank you so much for your consideration.

Sincerely,

[YOUR NAME]

OR (Talking Points for phone call)

I am a constituent of Senator [NAME]
I am phoning today to urge Senator [NAME] to cosponsor the National Pediatric Research Network Act (S.3461/H.R. 6163)

This legislation will benefit SMA and other rare diseases.

There are nearly 7,000 rare diseases affecting 25 to 30 million people most of whom are children.

The Senator’s co sponsorship of NPRNA would mean the world to me and other families across [STATE]

THANK YOU FOR OUR CONSIDERATION

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Special thanks to all SMA warriors and warriors of other pediatric disease communities, Representatives Lois Capps, Cathy McMorris Rodgers, Diana DeGette, Fred Upton, and Eric Cantor, and our friends at FightSMA and Gwendolyn Strong Foundation.