30 More Reasons For A Cure. Take One. [Alli & RJ]

August 1st, marks the start of SMA Awareness Month. There is going to be a change up on the blog. For the next month I'm going to feature other little boys and girls and their stories. While Audry has a story she is not the only one battling Spinal Muscular Atrophy. Some stories are in honor of, and others in memory of. I hope you enjoy the next 30 days and the beautiful people your going to meet. As always we ask that you continue to share our blog and get the information out there. 30 days, 30 faces, and 30 more reasons to donate. At the end of each blog there will be a link to donate to a cure. If your touched by a story donate in their name. We are all fighting for the same thing.... A CURE.

Without further a do, today is a 2 for one special. They are brother and sister Ali and RJ.  Here is their story.
In Memory of RJ Williams

Ronald Williams Jr., our RJ, was born February 17, 2003 and died at home in his sleep on June 9, 2003. Before he was born Ron, his dad, was SO excited to finally get his boy! Ron's birthday is February 19th so RJ was ALMOST born on his b day! I got induced because I couldn't wait any more! 7 lbs 6 ozs and 19 inches! TONS of brown hair :) He was such a happy, smiley baby with such big brown eyes! He loved pooh bear and so many people loved him. At 2 months of age he was rushed to St. Francis Emergency Room with pneumonia...he was transferred to Mary Bridge Children's Hospital where he was in Pediatric Intensive Care Unit (PICU) for a month...they ran many tests and was finally diagnosed with Spinal Muscular Atrophy (SMA)...we were heart broken. I wish we were
given the info we have now and I wish I had internet than so I could have has all the support from the SMA community that I have with Alli... because of lack of knowledge we were steered so wrong...he only had morphine and oxygen...at his funeral we played "In the Arms of the Angels" by Sarah McLaughlin.  At his funeral, his big sister, Kayla read a story she wrote about him. He is buried in federal way WA in Gethsemene Catholic cemetery in the baby section...
In Honor of Ali Williams







In Honor of Alli Williams

We were all done having babies and then surprise!! I knew that there was a chance she (our baby) could have SMA but the doctor said it was too late for the amniocentesis. The results of the amnio would not have matter though, she's a blessing to our entire family. I spent my whole pregnancy terrified and praying that she wouldn't have SMA...but I rarely felt her move. I knew in my heart before the doctors even told me...towards the end of my pregnancy I went in for a check up and they decided to induce me do to lack of fetal movement. So Ron and my mom rushed down to Swedish hospital and before we knew it (fast labor) out came Allionna Yvonne (Yvonne is after my step mom) Williams...most perfect baby ever!! Born weighing 6lbs 11 oz and 19 inches long on January 11, 2011 (1-11-11). She looked just like my other kids! Big brown eyes...I see her brother, RJ in her a lot. She was tested for sma at birth and we took her home and waited for the results...I was terrified the whole time. I'd pray to God to let me keep her. I knew, I just knew. Her brothers and sisters were in awe of her...they still are. They love her SO much. Laveah nicknamed her Alli baby...it kind of stuck! When she was 2 weeks old I took her to what I thought was a standard check up and got the news that would change everything...she had SMA. Needless to say I freaked out. I was crying so hard my mom had to come get me... the doctor said it would happen just like RJ and we would only have a couple months. Not again, I kept thinking...I can't do this again. On the drive home I kept telling my mom I couldn't tell Ron and the kids...I wanted them to have one more day just to be happy. But Ron knew something was wrong the minute I walked in. We both sat in the bathroom crying, everyone was bawling. Ron kept saying we had to be strong for her and I needed to come out and hold her....the next few days were a blur of sadness.

I had no hope, the doctors never gave me any. Then I started looking online and I found SMA Space and started talking to other families. They gave and continue to give me so much hope. I don't know what I'd do without my sma family. I draw so much hope and strength from them. I don't know what the future holds but we are going to fight like hell. I won't give up until there is a cure. My Alli is a fighter and believer. In my heart she'll be here for a long time. But we need a cure now.
When Alli was 3 weeks old we flew to Utah to see Dr. Swaboda. Her and her team were great. We learned so much. In April Alli had g-tube and nissen surgery done at Seattle Children's Hospital. We follow the NIV protocol. She is on VPA, in hopes that it might help.
I love you so much Alli baby, you are the best thing to happen to our family and I believe RJ's in heaven watching over her. We WILL beat SMA...we have to. I will do my best to learn as much as I can and be positive...but I sure hate SMA. Thank you again to the SMA community. I'd probably still be locked in a room crying if not for you. Jeanna Huette was the first one I spoke to she helped me so much along with the Gaynor family and Annette Reed...thank you!
 Alli has a huge amazing smile, everyone that meets her loves her right away. It's sad how little people know of SMA, we want to spread awareness to as many people as possible..

"Embrace The Suck"

To read more about Ali and RJ you can go to their website. http://www.oursmaangels.com/alliwilliams/RJ/story.htm

To donate and help save Alli baby and her friends go to http://www.sophiascure.org/donate

The Brave Little Soul

The Brave Little Soul By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" 

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." 

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" 

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.

 Priorities became properly aligned. 

People gave from their hearts. 

Those that were always too busy found time. 

Many began new spiritual journeys, some regained lost faith - many came back to God. 

Parents hugged their children tighter. 

Friends and family grew closer.

 Old friends got together and new friendships were made. 

Distant family reunited, and every family spent more time together. 

Everyone prayed. 

Peace and love reigned. 

Lives changed forever.

 It was good. 

The world was a better place. 

The miracle had happened. 

God was pleased.

Today, I talk to you not about Audry. Audry is doing great, but today I introduce you to a new face. Danika Marie Dietering, born on November 16th, at 7lbs 3oz, to Danielle & Scott. Danika like Audry has SMA. I havent really explained the "types". Danika is considered a type 0. She has no copies of the survival motor neuron like Audry, but where Audry has 3 copies of the survival motorn neuron 2, Danika has 0. Different experts argue different things about the SMN2 copies and how they affect our kids. They do know that the SMN2 does produce a little bit of the protein needed. Danika is a miracle baby. She is currently 8 months old and has fought her way past the expiration doctors gave her. She like Audry is a gem. I remember when she was introduced to the support groups like it was yesterday. When faced with the routes of care for SMA it's never easy. Do I give the gtube? Cough assist? Hospice? Trach? Her parents chose pallative care. They wanted to give her the most comfortable route possible. They've spent their days appreciating the small things in life. The loved deeper, hugged longer, and gave as many sweet kisses as they could. The last couple of days Danika has fought especially hard. In her battle SMA is winning. As her heartrate drops her respirations get higher. She's had a few close calls, and hospice is saying she's started the process towards the inevitable. Through it all Danielle has remained positive and strong. SMA is a lot of work, it requires physical strength, as well as mental. The battle that SMA moms face everyday watching their kids and being uunable to take away the pain is torture. These wounds are nothing in comparison to the scars that are left behind when their child passes. You see SMA is a lifelong battle, even after it's gone the parents are left to sufffer the heartache of losing their child. Danielle has asked not that we pray for her to beat this, because she is already passed the point of no return, but to pray that it's painless. They sweet Danika not suffer. I ask that all of you reading this post, stop what your doing and say a prayer for Danika, and for the entire family. For strength, and acceptance, for peace, comfort as they prepare to say goodbye, and most importantly healing in their hearts.  God sent Danika here for a reason to touch people, and bring us together. Same as Boog. However, it doesn't make this process any easier.

"Embrace The Suck"

The Gift That Keeps Giving

I knew that Audry's wheel chair was going to give her more independence. I just didn't realize how limited she was before we got it. After 24hrs Audry only needs to learn how to turn. She's mastered frontwards, and backwards. The teachers said that Audry had a blast today rolling herself down the hill and into the grass. Usually at recess she sits in the lap of a teacher, or on the ground in some shade. Not today! Today Audry went exploring. She loves her new chair, and when it came time for lunch, she threw a fit because they took her out of the chair to eat. She likes showing off what she can do. She does get scared though in big sisters class, because they crowd. The cute little multicolored balls on the spokes are a magnet for 3 year olds. As are the wheels. Poor Audry was shaking because everyone was crowding her and touching her. We showed up just before water play and rather than fight Emery, I decided to let her play. Audry took to rolling around the play ground. The water was more exciting then her new ride so we did catch some quiet time.

Kids, God bless them. While I'm all about awareness, and spreading the word, I was caught off guard by 8 4&5 year olds asking me why Boog was in a wheelchair. Can't exactly break down Spinal Muscle Atrophy so they'd understand. I chose to go the "Her legs don't work like ours" route. Each answer I gave was followed by another question and I was literally grilled by these kids. Haha. I will say though they didn't say any of the ignorant sayings that adults do. IE "Whats wrong with her" I swear one of these days I'm going to clock someone square in the nose for that one. It's rude. Nothing is WRONG with her!


After school Audry passed out. I can only assume it has do to the marathon her little arms ran today. According to her teachers she was in the chair all day, only to get out for nap time and lunch. Very proud of her, and how quick she has taken to her new piece of equipment. She may hate the rest of it, but this one she adores. After her nap she woke up and started fussing to get back in the chair. She wanted to color. Seeing as how she is princess table height I'm pretty sure I was more excited than her. Usually Audry colors in the sitting position with a paper between her legs. Only to end with her face planting, and being upset. So I set her up and big sister got excited to color with her as well. They even ate dinner together afterwards. It's really nice to see not only Audry benefit from the chair, but also big sister. Quality time is important but there isn't a whole lot they can do together aside from watching TV and snuggling. [until now]Emery isn't really a snuggler anyways. ;)

"Embrace The Suck"

Legs

The moment you've all been waiting on... 

Friends, family, and generous strangers, 4 months ago Audry was diagnosed with a grim disorder, we now know as Spinal Muscular Atrophy. I had no idea at the time the financial burden we would be walking into. I've always been incredibly independent and knowing that there would be things Audry would need to improve her quality of life, and myself being unable to provide them, absolutely broke my heart. I finally put my own feelings aside and started fundraising. It's more important Audry is comfortable than my feelings of asking for help. Sometimes in life things happen that are beyond our control. While we did not ask for this diagnosis, its my job to do whatever it takes to take care of Audry. With everyones generous contributions whether it was a prayer, a 5$ donation, or a $500 donation. I'm happy to announce we raised roughly $4,000.00. $2700.00 went to the Panthera Micro, $400.00 will go towards funding a cure for Spinal Muscular Atrophy, and the rest put into an account for Audry. While it's important to get Audry the things she needs, It's equally important to help fund a cure. My hope is that one day Audry won't "need" new equitment, or supplements. At the very least if it's not in her lifetime, my hope is that no parent ever has to hear those words. "Take her home, and love her, there is no cure, there is no treatment, prognosis varies, and 50% don't make it til their second birthday" I can't thank each and everyone of you enough for coming together in our time of need. Without further ado I present Miss Boog, in her brand new wheelchair [Legs] at school with her peers. It's a short video, mechanical error, thought I was taking video when in reality I have a bunch of blurry pictures. Haha. It's great to see her moving around and exploring. Brings tears to my eyes, and wouldn't be happening if I didn't have the support from our family. Family as in each and every one of you.

"Embrace The Suck"

Today.

Today was an amazing day. The girls were so kind as to let mommy sleep in. The kicker is Emery didn't destroy the house as she usually does if mommy tries to get some extra zzz's. Audry woke up fever free. She was still moody all day, but I'll take what I can get. The last few days she's only had one mood, miserable. At least today we got some smiles. She's still not wanting to eat a whole lot, but I don't stress not eating these days. [That's why we have the tubey!] 

After some 12 or so hours of sleep I got up and we headed of to Wal-mart. Didn't really know what we were going in there for, which is never a good idea, [BTW] but decided to wing it anyways. I'm proud to say I did not spend a small fortune. [this time] We found ourselves in the plant aisle. Anyone who knows me, knows I have a black thumb. My bamboo died. From what I understand they are pretty hard to kill. My backyard hasn't been touched since we moved in a year ago. All I needed were the right tools, and some motivation. With the help of my good friend. The jungle that once ran wild in the backyard is trimmed, turned, soiled, and another day will be re-seeded. We got a few plants but only one made it into the ground. After all the manual labor this afternoon, I'll be paying for it tomorrow. All in all it was worth it. The girls had a blast, especially Emery. Audry did what Audry always does. She sat giggling from her chair. Another reason I can't wait to get her in a wheelchair... speaking of, we've hit $2000.00! So close! Thanks again, and I'll probably thank everyone a million more times. It means a lot that so many people are chipping in to get Audry her "legs". 

Today was a day of no cellphones, no TV, just the people I love, doing something new together. Not only does my backyard look a million times better but we spent the whole day together. I couldn't imagine spending today any other way. Sure we had to take suction breaks, and feeding tube breaks, but that's our "norm". I'm getting so used to the treatments that sometimes, I don't even realize I'm doing them til we are sitting there with the machines. Every day tasks take longer, there is no "get-up and go" Today it doesn't bother me. This is our life. Today I'm just feeling blessed to have these babies. These are my angels. Today I'm not upset, or feeling sorry for Boog. Today I'm just happy. Today I've accomplished Embracing the suck. While I may not do it every day. Today was a success!

"Embrace The Suck"

Time in the Eyes of a 3 year old

So aside from Audry, contrary to popular belief, I do in fact have another little girl. Emery is 3 years old and SMA free. While most of our energy is spent on Audry and SMA. SMA effects every member of this family to include Emery. With that I decided to write a post about Nemo. I used to hate the nickname "Nemo". My sister gave it to her while we were deployed, it literally made my skin crawl every time I heard her say it. It wasn't until we came back on R&R that I took one look at her and she was indeed a Nemo. No, she wasn't named after the motion picture Finding Nemo. If I remember correctly it had to do with the way she talked. You'll have to ask Erin, she nicknamed her. None the less Nemo stuck.

Nemo is above the curve when it comes to brains. No idea which side of the family she gets it from, but she's wicked bright. At 3 years old she says things that make my eyebrows arch. We've been working on the whole sister has SMA thing. She tells her friends at school that Audry is sick, and her legs are broken. I love when someone calls Audry a baby, and big sister quickly corrects them that she is NOT a baby. Hell some days I need a reminder. It's hard being a single parent, but twice as hard when one child requires triple the amount of time, energy, and attention, as the other. Typical kids, and I use typical, not "normal", because being "not normal" is considered "abnormal". Seeing as how google defines abnormal as "Deviating from what is normal or usual, typically in a way that is undesirable " and neither of my girls are undesirable... where was I? Definatily lost my train of though. Go with it. Nemo is a bit of an attention seeker. She likes to be the center of attention and yet she still maintains the sisterly love. If Audry is getting too much attention Emery quickly reminds everyone that thats "my sister". She likes to explain how sister eats from a "straw" in her belly. She's all about educating from the 3 year old perspective.

Which brings me to the point of this post. I have many conversations with Emery and recently she's being recalling memories and attaching them with "yesterday" I wonder how much of this last year she really remembers. My only hope is that she's not damaged by the chaos that started on August 1, 2011. "Yesterday, we brought sister home from the hospital, cause she lived in your belly" We all know that was in 2010.  "Yesterday, I stayed at my aunties house and she let me have a binky." that was during her attempt to tell me she wasn't too old for a binky. Little does she know that yesterday was before she turned 3, and she is indeed to old for the binky. "Yesterday, I talked to my daddy." The sad truth is she hasn't spoken to him in over a month. Nor have I. "Yesterday, we went to the lake." All I can say is glad she is remembering happy memories. The lake day was a blast. Really, yesterday, she was at school playing with Bethany. Everything that has happened in her life was "yesterday" It really made me grateful that when we get older we develop a timeline. Lord knows if everyday was the day after diagnosis day, I'd be a hot blubbering mess 24/7. Diving in more with our conversations I also learned that today, and tomorrow, are the only things she really pieces together. I can tell her in a week, we are going to wet and wild, and everyday she will ask me. Until of course it's tomorrow and then she understands it.

 Mind you this is my oldest so I'm probably striking notes that have already been struck. It's crazy how a couple conversations can really get me thinking about the past, present, and future. I don't know what the future holds, I know whats in the past, and I can kinda recall what happened today. I am however going to embrace it. I am blessed with 2 bright beautiful daughters. Each bringing to the table a different kind of challenge. Emery struggles with Audry taking up so much time, and Audry struggles with SMA. All kids need love and attention. I've gotten a lot better with taking Nemo on "date days" Getting mani/pedi's or even going to walmart just the two of us. Good news is she's not keeping tally, cause everyday we did it yesterday ;)

"Embrace The Suck"

Fundraising, Hot Mess, and Focusing on the Positives

It has been awhile. One of these days I'll get better at finding the energy to log in and update our followers. Alot has happened. We've raised $2,000.00 for Audry's "Legs". The Panthera Micro wheel chair designed for SMA children. Just to cover some facts that are my frequently asked questions.

1. No Insurance doesn't cover it. I've already called tricare and double checked, matter fact I tripled checked. Called a few different times to see if I got the same answer. It was no. Even with a doctors letter of necessity. This particular chair isn't covered.
2. The money raised goes to the chair. Not a boob job, or a getaway as some people seem to think I'm asking for donations to fund a little something on the side for myself. People who know me, know how hard it is for me to ask for anything. None the less feeling like I am unable to provide for boog. I think it is important for her to be mobile and have that independence and this is the quickest avenue, as well as the most enriching. 
3. Why does it cost so much? It's made and distributed outside of the United States. 

This chair will give Boog the opportunity to do what other kids already get to do. She will no longer have to sit with the teachers at recess but get out there and wheel around. She will get to be upright with her peers, and if she wants a toy across the room by golly she can wheel her self over there and get it. Every day I hear people complain, myself to be included, about how they hate running, or just want to "sit down". We take for granted what boog is unable to do. She helps keep me in check. While getting her walking is unrealistic without a cure, adapting to her needs and getting this specific chair will meet her needs halfway is attainable. I can't wait for Audry to be able to roll away from me mid conversation when she doesn't like what I have to hear. Sounds crazy but until you have a child in her shoes you don't fully appreciate the little things. I'm looking forward to the girls playing tag. With the help of the many that have donated we are close to achieving the independence Boog needs. I can't thank the family and friends who have so generously donated towards our cause. Also the complete strangers. Still awaiting word to see how the fundraiser in New Jersey went, but I'm sure it was a hit! I still have bracelets left and donations are still being accepted. www.gofundme.com/AudryMaxineAgainstSma. 

Enough about the chair and fundraising. Hows the little stink doing? [HOT MESS] Well she is sick [again] I know it seems like every other week. They swear our kids aren't auto-immune deficient, but I'm starting to think otherwise. She catches EVERYTHING. Sure, If I pulled her out of school and kept her home theoretically she'd stay healthy. However with myself working in the Emergency Room, and big sister still in school, she would still catch everything anyways. Seeing as how we all can't stay locked up in the house, I'm okay with her being in school. By the time she starts kindergarten she will have a wicked immune system, and maintain perfect attendance! I get a lot of grief for my decision to leave her in school. I want Audry to live a normal life. I want her to go to school, to have friends. However long God chooses to grace us with her presence, I want her to enjoy it. Fortunately Audry hasn't progressed in the disease so much as to being unable to attend school. I  find my self sometimes jealous of the type 3 families. Its sick I know. I immediately punch myself in the gut for even considering being jealous of another family with a different form of this awful disease. At the end of the day whether it be a type 1,2,or 3 family. This disease is the same in the sense that it blows. Lately, I've been focusing on the positives. The things Audry can do. Here is 10. 

1. Melt the heart of a perfect stranger. 
2. Sit unsupported
3. Sleep through the night
4. Bounce back from illness virtually unscathed
5. Smile.  
6. Feed herself. 
7. Giggle. 
8. Communicate 
9. Watch Dora all day long and not want to gouge her eyes out. 
10. Dance. While its not the conventional way to dance, she will rock out with her hands in the air and shaking her hips. 
11. [I lied] Most importantly Audry doesn't let SMA get her down. No matter what she's doing its with a smile. She truley enjoys her life and the cards she's been dealt. My only hope is that as she grows older, and believe me she will, she holds onto that attitude. 

A little more on the hot mess fiasco. This week has been pretty exhausting. As is with every illness that SMA throws at us. Last time I updated we had hand foot and mouth. We will call this illness "pain in the ass" because we don't yet have a diagnosis. I can tell you it snuck up on us. Normally I have a warning that its coming. She coughed once on Sunday. I don't count that as a warning because her sats have been normal until Tuesday morning. Audry had a low grade fever Monday nigh. 99.4. Put her to bed and that was that. The nurse told me she hit 100 during the night. Sometime in the next 3 hours all hell broke loose and Audry was at 103.4. Her alarm woke me up because her heartrate was 220. Yikes. Made her an appointment and had the doctor run a viral panel. While he didn't see the point, I did. I may have spiked an attitude in telling him it wasn't going to cost him personally so run the damn test. Sheesh. We find out tomorrow what has been reaking havoc on Miss Audry. The fevers have been anywhere from 101-105. The generally like to kling to the 102 and 103 mark. The motrin around the clock has done a number on her digestive track. We spent all day yesterday listening to her "owie, mommy, owie" Last night we gave her a suppository and a bolus of miralax. It took damn near 12 hours to get some poo. She was still in pain and after her morning bottle she so kindly projectile vomitted all over myself and the couch. After getting her cleaned up we switched to pedialyte. While the AA formula is what her body needs, its also quite valuable, and isn't going to do her any good all over my couch. This afternoon after a monster poo that also plastered my couch I put her on a continous feed of AA formula. My "Embrace the suck" moment of the day definately giggling as I'm steam cleaning the couch. I've been talking about it for weeks. Audry was just making sure I got it done. :0) Thanks Boog! Shes sleeping now and hasn't done alot of that the last few days. The fever broke last night, only to return this morning ten fold. The worst part about all of this is not the treatments, not the work it takes to take care of her, it's watching her, in pain, and knowing that it's got to "run its course". For a kiddo that smiles continuously I can literally count on my hands only how many times I've seen that gorgeous smile. My heart breaks for her. She cries for me to hold her even though she knows its more comfortable on the couch on her side. Lots of trial and error these past few days. I look forward to next week and hope this crap stays out of her lungs. To add insult to injury boog also has some new teefers coming in. At least when she gets better and flashes her smile it will be even bigger with her new additions. 

"Embrace The Suck"