Just Another Manic Monday

It has been over a year since the last update, and I’m feeling “bloggy”. Enjoy!

Audry @ Home

        Just to recap for those that have missed the updates, or aren't on my personal face book page. Audry has been sick a couple weeks. Nothing too dramatic. Stats stayed decent only dropping to 90 at their worst. Fevers were high but manageable. She had a follow up appointment as she wasn’t getting better. We all know it's not uncommon for Audry to take more than a couple weeks to fight off a bug. Monday we went to her follow up. The appointment took FOREVER. I was at my wits end. Sometimes Madigan being a teaching hospital is a pain in the ass. Since, her doctor is on leave—again, that’s another story—we of course got slotted with a resident. I love teaching people about SMA, especially up and coming doctors. What I don’t like is repeating myself, and spending an hour going over her medical history, just to turn around and repeat it all again when the actual doctor comes in because they want to see for themselves, already annoyed at this point we were pushing 2 hours, they call in “dr. house” i.e. infectious disease specialist. This lady wanted an X-ray and labs. Frustrated because Audry has now been off bipap for 3 hours, and it’s time for her treatments, not to mention we have a 40 minute drive home if we are lucky enough to miss traffic. At this point I start to get mouthy. I agree to come back tomorrow for labs and grab an X-ray on the way out. We got the x-ray and set off for home. These damn appointments take forever. We showed up at 1330 and didn’t leave until 1730.

       On the drive home an unknown number calls my phone. I ignored it. Another unknown number calls but I recognize “(968)” and know it’s the hospital. So reluctantly I answer. It’s Dr. House and she’s adamant about an admission. Get out of here lady—aint nobody got time for that and besides her o2 is fine. She’s at 96 and she’s asleep, bite me. She then proceeds to go off on a tangent and the only thing I paid attention to was that her left lung was “whited out”. The first thing out of my mouth is right her a script for oral antibiotics, after all she still looks great, then I realize that whited out likely means collapsed. At this point I tell her fine, but I’m stuck in traffic and need to go home and grab her machines. So I called Brandon, made arrangements for Emery, and continued my route home. I pulled in to the house, packed up everything except the kitchen sink and we headed to Madigan.

The Ugly Xray

         I told them we’d be here around 1830. Yea it ended up being 1930 but we made it here none the less. Audry wheeled herself in stunning every nurse on duty. After all, they had seen the x-ray and were expecting a kiddo in full blown respiratory distress. Audry was smiling and wheeled herself in. They took labs, asked a bazillion questions, played with Audry, did her treatments and we were “Settled” around midnight. I saw the x-ray for myself and was honestly impressed. You see that black thing, it’s her right lung, generally people have two, which brings me to the white thing, and it was a tossup. Docs thought it might be puss, or a collapse, or a combo of the two. At this point I’m freaking out. I thought she was fine. I wanted to keep her home. I’m going to go with it was a mood because for a second I questioned my judgment. Then I realized that everyone was as surprised as me that she was indeed terribly sick. She’s been on q3 for treatments since we arrived. I’ve done roughly half of them. She’s pissed, and annoyed, but coping in her own way. She gets mad, yells at me, then won’t talk to me…but if the RT does it she cries for me, begs me to do it, and cooperates. So now I just let RT do them and I take over when she wants me to do it. All craziness aside she’s doing amazing. Still hasn’t dropped below 90, x-ray’s look clearer everyday (still trashed but getting better for sure), and we’ve gotten smiles for dayzzz.

All three PICU stays at a glance <3

        This afternoon we got the ultrasound results back, NO FLUID in or around her lungs. This is great news! A chest tube would’ve been a heart attack on my part. Her upper lobe is still has a “significant collapse” I’m assuming the left does too because it’s still all white. We can almost make out the silhouette of the heart. The plan is to get the junk out, attack the bug with aggressive antibiotics, inflate the crap lung and go the hell home. We are still waiting on viral, bacterial, and sputum cultures to see what caused the mayhem. Her right lung is doing all the work and doc says it’s hyper inflated. I compare her right lung to the incredible hulk. It beefed up to save the day cause the left lung tapped out. Clearly I’m delusional and desperately need sleep because I even imagined the lungs talking. The right one telling the left lung “I got you boo, sit this one out”.  It’s been a little over a year since her last stint in intensive care. I will say the staff has been pleasant and it seems they have figured me out. Stay out of my way and no one gets hurt—okay I’m exaggerating a smidgen—stay out of my way and you won’t have to call social work and tell on me. ;)

Embrace The Suck

"Piss On SMA"

First let me start off by saying I suck at this whole "blogging business". When I started this venture.. it was to update families and a way for me to vent. Maybe even educate. Here, we are a year later and I'm probably 20 posts in. There is never enough time in the day. Something always comes up and my life is pure utter chaos 99.9% of the time.

The current curve ball is allergies. All winter I've been looking forward to spring. Who doesn't love spring?! I'd be able to start gardening again, see some of that great sunshine we've been deprived of since September, as well as it would be too warm for the cooties to attack our family. I say our family because while it may not attack us all the same we all find ourselves deprived of something. For Audry it's usually oxygen, for emery it's time with mommy, for mommy it's sleep, food, and years off my life.

 With the gardening season approaching this means allergies. You see while most people can take a zyrtec/allegra/claritin and "suck up" the snot for a few weeks not Audry. We've been battling congestion for the past 2 weeks. A few low grade fevers, and even a random pneumonia that still makes no sense to me. I'm convinced it was a mucous plug wreaking havoc on Audry scar tissue from the collapse last September... none the less I had a few days off work added in a few treatments and everything was business as "usual". Our normal.

Today, started like most Thursdays, I hit the snooze oh, ya know, 14ish times. Finally dragged my happy ass out of bed and hopped in the shower. Audry went to OT today, and did awesome. She pushed off her feet for the first time since she was 7 months old. I wanted to cry. I probably would've but the cymbalta has my emotions all over the place and today wasn't a cry guy kind of day. ---That was yesterday. Another story for another day.

This Morning At OT

I got to work just before lunch time and decided to raid the supply room and organize my office. It's cluttered and was really starting to get to me. I kept watching the clock feeling like I needed to be somewhere. The whole day was in slow motion. I got the first call at 1. Audry had a 99.8 temperature. (rolls eyes) It used to wig me out but since I just left her a few hours earlier and she was fine. I stayed at work. Fast forward 30 minutes, another phone call her heart rate was 165, . --Not my favorite but her o2 was 98. Works for me. I spent another 30 minutes looking at tummy Tuck before and after pictures, and researching how to get the army to pay for it. What? A girl can dream. After work I ran home to change before the gym. Left my phone in the car, in and out was my plan, if the phone rang it could wait. I come back and look at my phone. The screen read "4 missed calls."

This Afternoon When We Got Home

In lieu of recent events at the daycare; I didn't even look to see who was that was blowing up my phone, I already knew. "L" answered. "Thank you for calling Kindercare--" I cut her off. Four times, what happened? Is she okay? "She's at 102 and really cranky, we took her to "K" because she was inconsolable. I knew if she was crying she was over 102.5, that's her cut off. She can compensate all day long 102.4 and below. She gets .1 higher and she tanks. By the time we got home she went from being upset to being asleep. In my head I thought--and now we've crossed 103. After a year dealing with the "joys" of SMA, I know her body better than she does. I can tell you her temperature without a thermometer. Her mood/sats/and eyes tell me whats up. I can't believe how much CRAP we suctioned out!!! It took 40 minutes to finish the treatments. [Vest for 10 minutes with a saline neb, followed by xopenex 2 puffs, followed by 5 coughs, followed by suction, repeated 3 times, manual chest pt on the stupid stubborn weak left lower lobe, 8 more minutes on the vest, 5 more coughs and suction, two more times.] When it was all done, I brought her down stairs took her temperature, 103.5 (damn I'm good). We hooked up the pulse ox, started a continuous feed, gave her bear and moo, flipped on Shrek, and she was good. Then she yells "Mommy! Blow" I grabbed the tissues, and held it while she mustered up the weakest blow out of her nose. She said "again". At this moment I broke. We did this 6 more times as she pleaded with me "no, suction, I, blow" I finally got the suction. Low and behold it was a plug. She gagged as it rocketed up her throat and out of her nose. Nothing is worse than watching her struggle to blow her flippin nose. She fell asleep and now it was time to tackle how SMA was wreaking havoc on big sister.

Lesson one- never plan, life will derail you. Emery has her very first ballet recital tomorrow. We were all very excited. We even acquired a matching tutu for Audry so they could be twinkies. Even though Audry is sick, I had full intentions on taking her, and what ever machines she required to watch big sister do her thang. I planned to dip out of work early, hit up walmart for some glitter, and show up early to fix her hair and glam her up. After checking my texts from her doctor he got us an appointment at 1:15 tomorrow. My heart sank and in that moment it was torn between my girls. I had two options say screw it and head into the weekend without a chest xray or swabs winging it to avoid breaking my four year olds heart. OR tell her we weren't going to be able to go because sister was sick, couldn't bear the thought of seeing her disappointed. For a half a second I considered just not telling her, then I thought back to all the basketball games as a kid scanning the bleachers looking for my parents. The disappointment I felt when no one showed. Both those options suck.

SMA is an asshole. It's hurting one physically, and the other emotionally. I can handle SMA and it's aftershocks, I'm pretty good at getting my ass handed to me by this disease. I don't think its fair that my four year old has been put in situations where she has to be older than she is. It's no secret 75% of my energy is spent on Audry. She can't do for herself the simple things we can. She can't walk, she never crawled, hell she can't even blow her damn nose. She relies on machines to keep her healthy. As soon as she gets sick Emery takes a back seat. It's not on purpose but it happens. God forbid Audry ends up in the hospital Emery is all by herself. Every time, I ship her off because Audry's too sick or the PICU calls, she thinks I'm never coming back. I hate having those talks. :/ As a parent it's my job to do for both kids.  I refuse to let SMA take her recital from her. I refuse to let Audry drown in her secretions. They both have needs and while they are vastly different and Audry's tend to be more pressing, they are needs. Come hell or high water I will make it happen. Audry will get a chest xray, tomorrow, and she will be dressed in a light pink tutu so when we show up at the recital, Emery, will be able to show us, how hard she's worked for her big day. Piss on you SMA. You can take my sleep, my appetite, and my hair (I swear, I find new greys every day) but leave my girls alone. I can't allow you to take away from either of my girls, not today, and most definitely not tomorrow.

Embrace The Suck

Strong Enough

Anyone who has access to my facebook knows, it's been a rough few weeks. I'll be the first to admit I come from a long line of stubborn, hot headed, emotionally unstable women. None the less we are strong, perisitant, pains in the ass. However, lately I've felt broken, overwhelmed, and definatly emotionally unstable. Anxiety, and Depression have reaked havoc. My theme song was B.O.B-Out of My Mind.  I sang it over and over again in my head. "I'm, out of my, out of my mind, out of my fucking mind. I was doing fine, once upon a time, Then my brain left and it didn't say bye, Don't look at me wrong; I'm out of my mind, Like Nostradamus and da Vinci combined, So paranoid of espionage, I'm watching my doors and checking my blinds, My brain is on vacation, they telling me, &, I'm bi-polar to the severity, And I need medication, apparently, And some electrocompulsive therapy, I am a rebel but yes I'm so militant, Still I'm eligible for disabilities,I am psychotic but there is no remedy,This is not figurative, this is literally, If these n****s go dumb, I go to the mental facility, See, man I'm so out there, I slap fives with E.T, I don't need a feature, they don't wanna when I'm on this beat, if you feel the same as me, then you gotta agree." Yea...It was that bad. My days were spent oversleeping, nervous pacing, headaches, and hoplessness. On the weekends I neglected personal hygiene and buried myself in Call of Duty black ops because it required me to shut off my brain and relenquish pent up anger on camping assholes who were really just playing the game. We tweaked medications, and I even went to a psychologist, twice.

After multiple medications adjustments and still fighting feelings of impending doom, I decided to try another route. Where modern medicine, and cognitive therapy failed me, it was time to get back to my roots. After a week from hell, last monday I woke up, and something deep inside my heart said "change your radio station". I'm not talking multipe personalities, I said my heart, not my brain. I went to 105.3 and in the 20 minutes it took to get to work, God did wonders playing DJ. From Laura Story, to Casting Crowns, to Matthew West, and Mercy Me. I went from overwhelmed to calmer than I had been in days. Still not a 100% I changed my pandora from Spose to Christian Hits 2012. While at work I heard a song by Matthew West. It's called Strong Enough. If I had to pick one song that encompassed the way I felt, it's this one.

You must
You must think I'm strong
To give me what I'm going through

Well forgive me
Forgive me if I'm wrong
But this looks like more than I can do
On my own

I know I'm not strong enough to be
everything that I'm supposed to be
I give up
I'm not stong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
For the both of us

Well maybe
Maybe that's the point
To reach the point of giving up

Cause when I'm finally
Finally at rock bottom
Well that's when I start looking up
And reaching out

Cause I'm broken
Down to nothing
But I'm still holding on to the one thing
You are God
and you are strong
When I am weak

I stopped what I was doing and listened to this song, and in that moment I realized... I'm such a stubborn pain in the ass, that giving control to somebody else in any situation is nearly impossible. I would pray and "Give it to God" and when I woke up the next day, I'd take it back subconciously. Worry, doubt, and overanalysing my life, were mine again. Everyone tells you in these situations to "give it to God" but no one walks you through the motions of what that really means. Do I say a prayer and call it good? Bam, God it's yours have a nice day? No. I learned this last week what giving it to God really means. When you start obsessing, or worrying, cause, well depending on the persons personality, those are the same things; turn your hear to God instead. Say a prayer, or as my sister Erin would say, "Satan, in the name of Jesus Christ, I rebuke you!" While everyone immediately flashes to the televised evangilist who are more often than not, over dramatic, and scripted, the preacher laying his hand on the crippled, yelling these words, pushing the woman off stage and then she walks..."miraculously". It brings her comfort. For me it was flipping on Pandora. Can't, in my case, obsess if I'm singing to my heavenly tunes. 

Everyone has struggles, everyone comes across hard times. The level of hardship depends on what God feels that person can handle. While most often then not, I doubt his judgement, in my character, and what he thinks I can handle. Part of who I am, and who I came from, is never giving up completely. While I'm the first to praise his name when I'm feeling blessed, and times are great. It usually takes me hitting rock bottom before I ask for strength. I'm stubborn, moody, blessed, but I'm not superman. I've sense changed the song I sing in my head to Matthew West, and BOB and Nikki are taking the bench. I can't do this without him. People always say to me how much they admire my strength, its through the grace of God I make it day by day. I may be a single parent [to the most awesomest, yes I said aewsomest, kids on the planet] who works full time, and my idea of a great night is one that ends in a bubble bath. Even if its 10 oclock at night because the chores and children took priority. So long as I have my starfruit sugar body scrub, and pandora, to physically and mentally scrub away my issues, I'm a happy girl. I'm sure I'll forget again, but today, and yesterday, I know that I'm as strong as everyone thinks I am, but only when I acknowledge that, I don't do this on my own, unless I choose to. 

 I can do all things, through Christ who gives me strength, and I don't have to be strong enough. Neither do you.


"Embrace The Suck"

The Dark Days

Recently I recieved an email from a friend of a friend. Someone she knew had just recieved the crushing diagnosis we did back in March. I've since reached out, and listening to her talk, brings back so many memories. It walks me through the diagnosis like it was yesterday. No matter who you are, or what you do, the news of SMA reacts the same in all of us. Everyone has their story. How we cope is carnal instinct. Some fight, some flee. Others are stuck in between living pergatory over and over again. Wishing its just a bad dream. Some go through the all of motions and cover all the basis.

For those of you who don't know, I'm going to take you back, to what I refer to as "The Dark Days"

February 17th- I recieved a phonecall in the middle of the night letting me know that my grandmother, who at one point was more of a sister to me, passed away. The woman was a bare all no nonsense kind of woman. Every morning I'd call her and she'd either tell me to stop being a dramaqueen, or leave my husband. haha. She was wise, and I looked up to her. Doris Jean [She is rolling over in her grave because I used her first name] died of lung cancer. She was so strong, and so stubborn, she waited til the point of no return before letting the family know. To my dismay, her death took me by complete suprise. To this day I still dream of her and to no avail, in every dream we are talking on the phone. Your probably what if any way does this tie into Audry's diagnosis. I briefly brushed on SMA with my grandmother before she died and that they were simply "ruling it out". No one believe Audry wasn't going to get stronger, just that she'd need a little more help, than most kids. After my Doris died, Audry started sitting up straighter, becoming more verble, and overall stronger. I attributed it to my grandma putting in a good word with the big man upstairs when she got there. I don't believe in ghost, but I do believe in angels. My honory ass grandma made it a point to turn off tv's, move my mattress off the bed, as well as knock over some tupperware, the week after she passed. God, I miss that woman.

February 24th- I woke up that morning like any other morning. Tired. Being a recent single parent I was in over my head and had to be at work in 45 minutes. Rushing had become my "normal". I arrived to work 10 minutes late. Snuck in through the back and because of recent events with the AWOL ex husband, and Audry being referred to the Developmental Pediatrics for "developmental delays" they naturally assumed I was on appointment. I came in un noticed. I recieved a phone call from her pediatrician saying the first set up labs had come back. She had previously told me that no labs would be given over the phone. Surely to prep me for what I was walking into. I set up an appointment for 1300 and when the time I came, I went up to the clinic. Convinced that my baby did not have this disorder I so stupidly did my research on. I was smiles, and happy go lucky. Immediately I noticed that I was the only one in my euphoria. 4 doctors/specialists were in the room with me. There was 2 pieces of paper face down on the table. Dr. G's hands were folded over the paper, saddness in her eyes. All eyes were on me. She started by saying "The labs came back...." she was quiet. "Audry tested positive for Spinal Muscular Atrophy". Before even processing what she had said I blurted out "WHAT TYPE?" Now it was the Neurologists turn to talk. He explained that Audry was a bit of a question mark. She presented early, and seeing as how she was so weak they wanted to put her as type 1. However 13 months was a late dx for a type 1. So they agreed on a weak type 2, strong type 1. After 30 seconds of casually conversating with them, as if they hadn't just given Audry a death sentence. I through up. All bets were off at that point. I continued to sob uncontrollably, wrenching, and dry heaving, unable to see or hear anything. Everything I had read, my worst fears, were confirmed in that office. The poor social worker, God bless her, trying to give me the slightest bit of hope, was taken a back by my "FUCK YOU, THIS IS BULLSHIT!" I was hostile, I was futile, I was devestated, I was heartbroken, most of all I was grieving. The 30 minute appointment turned into 4 hours. I finally go to the "all cried out phase". Told them I was leaving. I needed to be with my kids. They talked with my unit and scored me a 4 day pass, as well as a she's too distraught to finish her 12hr shift.

On my way home I cursed God in the car. I was pissed. How could he do this to me? I was a good christian most days. I went to church, I prayed with my kids, and teach them about him. He took my grandmother the week prior, and now he was trying to take my kid. My kid that I love more than world itself. Little Audry who had a sister, and people who loved her and care for her. She was so young. It wasn't fair. Pretty sure God drove me home that day cause I was a blubbering mess. Mix in the rain and slick roads it's a miracle I didn't hit someone. While cursing him for giving me this gift of motherhood to turn around and give me more suffering. To make me a single parent, and now this. Furious and going off in my pretty little head about how screwed up his plan was. A song came on the radio. Every once in awhile I listen to christian music. I don't particularly remember putting it on that station that morning. Non the less, It was on it, and the song that played stopped my thoughts in its tracks...

Blessings- By Laura Story

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

'Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

...as the song progressed the tears stopped and a calm came over me. I was able to regain conciouness and the weight that I was carrying from that day came off my shoulders. I even somehow managed to pick up the kids from school and explain to the teachers about Audrys diagnosis. They cried, and I held it together. I grabbed the girls and went home. When I arrived home and I got the girls in the house. I looked at my babies. I held Audry tight. I wouldn't let them see mommy hurting, because well what good would that do. I finished out the evening chain smoking, and watching movies with the kids. That night I put Emery to bed. Audry being too young to understand emotions, I took it upon myself to silently unleash the emotions I pent up that evening. She didn't mind the extra hugs and kisses. To this day she has no idea what came over me. The emotions of being told "There is no cure, There is no treatment, and chances are she won't make it to her second birthday" are enough to break even the strongest of people. I spent the next 4 days on a rollercoaster going up, and down, running out of the room to cry, washing my face to hide the tears. I learned early on I did better with other people around. That weekend I filled the house with friends and family. When it was quiet was when I was in the most pain. By the time I returned back to work, I had dug out my big girl panties. [I had since put them away after the ex husband went AWOL] While there wasn't a cure nobody was taking my sweet Audry until I said so. They could shove their expiration date where the son doesn't shine. I hardly slept at all the first month. Between connecting with other parents, researching all the things I was told would help, as well as spending every waking moment with those babies, I was exhausted. I learned a new language, and we had a new life, I rely on God more so now than in my entire life. For those of you who are tracking my childhood, you understand. Our life isn't unicorns and rainbows, but its our life. I didn't ask for it, but the pain I feel is temporary, and God does indeed have a plan for myself. Audry is an angel who touches every person she comes in contact with. I'm lucky to have the title of being her mother. I was hand-picked by God to do take care of his special package. They say "God doesn't give you more than handle." While, I seriously question his confidence in my character, I'm doing make do, most days. I'm happy to report that Audry is nearing her second birthday and we are all impressed with her progress. I'm no longer drowing in "The Dark Days", and I find comfort in knowing, that when it is her time, while it's not happening any time in the near future, Grandma Jean will be there waiting, and she will have someone to "show her the ropes"

"Embrace The Suck"

Welcome To Holland

Found this today and wanted to share. For everyone who wonders what it's like to be a parent to a special needs kiddo...

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
by Emily Perl Kingsley

"Embrace The Suck"

Phllip SMA type 3

During the year of 2008, we didn't know Phillip was affected by SMA III. Throughout the whole year, my mom notices Phillip having difficulty going up the stairs; we also noticed that he was getting tired easily and he was falling a lot...So, after various doctors appointments and a biopsy...I received the worse news a parent can have and that is when the doctor say, "Your son has a muscle condition called Spinal Muscular Atrophy; he will lose his muscle strength." When I heard the news, I felt like my whole world was collapsing...I needed not to cry because Phillip was sitting next to me...I needed to be strong for him and I did it. On the day that we were told he had SMA, I decided that I will fight and continue to fight for him...I decided that I will do anything in my power to keep his faith strong...I decided that we were not going to give up and I was going to make sure of that. My family and I have been struggling with his condition but the beautiful thing is that WE ARE NOT GIVING UP.

This past year, Phillip's condition has been progressing and he has been having good and bad days...On his good days, he is a happy boy who doesn't have SMA and his bad days, he is a boy that is unable to move and therefore he has to be on his wheelchair...Phillip still learning to deal with his SMA; he is starting to talk more about SMA ...

We have created a page on Facebook so people can get to know about Phillip...He writes posts about his day and about how SMA is affecting him....We want to do our part to raise SMA Awareness...We need to let people know that SMA exists and there is no cure...but soon...God will bless us with a cure...

"Embrace The Suck"

To make a donation to help Phillip, and others like him please visit www.sophiascure.org/donate today! 

Deirdre Valeria Medina-Rivera, our Diva! There are no expiration dates!

Deirdre was born in San German, Puerto Rico, in August 17, 2007. Our diva was a beautiful, healthy baby that was all grown, with a beautiful mane of hair! She proved to be a very serious baby that only showed a hint of a smile when food was in the horizon... or her Godfather. Everyone was surprised by her big blue-green eyes, and her very serene demeanor. She made a raspy noise that called Mommy's attention, but the pediatrician said that it was something normal... The concern grew along with her lack of strength when holding toys and still we were assured that she was fine, just a “ late bloomer”. Deirdre's name means " Lady of sorrows" , and it is from a Celtic legend. Her second name is Valeria, meaning " with valor and courage". Her name describes exactly who she is... She faces the sorrow of having SMA, but she is quite a warrioress who holds valor and courage in everything she do and accomplishes.

She was baptized, and enjoyed her first Halloween and first Thanksgiving. But when December 17, 2007 arrived, just when she turned 4 months old, Deirdre had a respiratory arrest that landed her in the hospital with a collapsed lung and both lungs filled with fluids. That day I had run errands with her, and she was alone with me in our house in the countryside of Hormigueros, PR... I had placed her in bed, and something told me to check on her. As I held her up her eyes rolled up and she became completely limp. I brought her back with four big breathes, placed her in the car-seat and drove to the nearest clinic... It was a 30 minute drive that seemed eternal to me... Upon arrival the ER crew thought the baby had choked on milk and that I was overreacting. When they saw she was blue, then they moved... And transferred us to the pediatric hospital in our hometown, Mayaguez...

Doctors said she would not live, and they did not know what else to do with her... She had draining tubes on her chest, and oxygen... but she showed little improvement. Our whole world stopped... and hope was very thin... Christmas Day arrived, and all we asked for was simply for our baby to live. We were very grateful to God for granting such a wish... Miracles happen everyday, at every moment... People should become more aware of that simple fact.

In January 2008 results came back from the lab and confirmed that Deirdre has Spinal Muscular Atrophy Type 1, Werdning-Hoffman... We were devastated... That night we sat down to internalize everything, what the diagnosis meant, how helpless we felt... I wrote everything that had transpired in Deirdre's blog, a journal that I keep for her since before she was born. For the next days we battled doctors and were asked for decisions we could not make... And then we realized that there were messages in the blog from families from all over the globe... families dealing with SMA. These people gave us answers. We realized it was time to stop the distress and start the action... Crying for our baby would not help her. We understood whatever we were to do had to be done fast.

Deirdre was transferred to the pediatric hospital in San Juan, PR... There, the quest for ctor's help began. In the end we had to go to a place where they understood what to do with SMA patients... We were granted a Catastrophic Funds flight, an air ambulance that would take our baby to Newark, NJ to the University Hospital were Dr.Bach and a specific PICU staff that face SMA everyday would try helping Deirdre... We had been denied 4 times that flight, but we didn't give up... We left our normal life back in the island... friends, work, family, house, car... everything... But leaving everything was the trade-off for giving Deirdre a chance at life. Deirdre was 8 months old when she finally reached New Jersey. And turns out that on the third day of her arrival she was successfully extubated to bipap. She stayed a week in the hospital as they made sure she was fine, and that we were well trained to keep up with her care at home... And our new home became Newark, as we could not go back to Puerto Rico. The island has the technology and the medical prowess to support SMA patients, but the system makes everything hard especially for blue collar workers... Maintaining a PICU environment or equipment at home is very difficult over there, government help is almost absent. And then the doctors egos come into play... Only one pulmonologist in the whole island actually see ventilator patients... a big shame!

The first two years were really difficult. We had no transportation, and Deirdre was in the hospital often. But after she turned 3 years old she started to be more stable. We also cut the parade of nurses that was going on, and kept only two nurses (thus controlling the exposure to outside germs and people who did not know how to handle her). Deirdre started Pre-K at home. Her teacher is amazing and has stayed giving her home instruction for two years now. Deedee just finished her second Pre-K year, and will start Kindergarten next month. During Summer, she gets home instruction in the mornings and she has attended for two years in a row to the Camp Jr at the Newark Museum where she has made many friends and has learned much about different cultures and arts and crafts.

Deedee gets different therapies through the day: physical therapy, occupational therapy, speech therapy... and assistive technology assessments. She uses eye-gaze technology to speak with her communication computer, and uses various switches to activate favorite toys and games. She is currently under evaluation for hippotherapy and aquatic therapy. She loves traveling and has demonstrated interest in animation art... especially the art depicted in Wonder Pets. Apparently she has the artsy streak that her mom has. She is also very fond of nature documentaries, and Disney movies (especially those with strong willed girls like Mulan and Pocahontas). Deirdre is very bright and has quite a strong personality herself!

Deirdre will turn 5 years old next week. Her journey has been amazing, and it gives proof that there are no expiration dates and that where there is a will there is a way. SMA kids can do anything, they just need the tools to do so. We are here to provide those tools, and enjoy the ride. Deedee has made our lives better in so many levels! She touches many lives, and she inspires many to live live to the fullest... and just do things. Dream big, and make dreams happen! SMA cannot stop that.

Deirdre's website is www.DeirdreMedina.com. It is in English and in Spanish, we wanted to share all the information with other families that did not speak English as well as we wanted to raise awareness and share Deirdre's journey. The site is all about Deirdre: Equipment, doctors, pictures, videos... and information about SMA. It links to Deirde's blog, the little journal that saved her life and which we had named "A little mage in the family: Chronicles of a Spellbound Baby" . Wow, our little Deirdre turned out to be quite the sorceress after all! Her magic spreads to everyone who dares to get to know her. Give us a visit, it's just around the riverbend!

"Embrace The Suck"

To donate and help find a cure for Deirdre and all of her friends please go to www.sophiascure.org/donate. Help us end SMA today.