Tuesday, August 5, 2014

6 Years Since a Little Wonder was Born

Not much to say, really. Ollie would have been six today.

We still miss him, and we always will. Each year get's a little "easier", but that's all very relative. I will be forever thankful for the capacity of the mind to highlight the best memories of our time with Ollie and keep the worst buried a little deeper. Today is one of those days that the two fight it out, but that's OK. Life is made up of good and bad moments. That balance is what makes us human and helps us understand and empathize with others. Ollie taught us a lot of lessons like that.

We are thankful for his crazy little brother and sister that keep us so occupied and focused on the future. It will never stop the "what might have been's", but those two give us a whole different set of possibilities.

Love ya little guy!


Wednesday, April 30, 2014

Happy 4th Birthday to our Favorite Set of Twins

It's hard to believe, but yep, it's been 4 years since we ended an unbelievably stressful period of hospital stays for Bekka only to begin an even more unbelievably stressful chapter of hospital stays and surgeries for two tiny kiddos. Thanks to incredibly talented doctors and nurses, they both made it home.

When I say tiny, I mean tiny. 1lb 7oz for Penelope and 1lb 11oz for Isaak (or 650g and 780g for our hospital and foreign friends ;) That's what being born at 25 weeks and 3 days gets you. If you want to relive that, just follow this link: A one line blog post! and then click on newer below each post.

When Penny came home (nearly a month before due date), she only weighed a little over 5 lbs and when Isaak came home a month later (just after his due date), he weighed just over 6 lbs. Now they are both around 75th percentile. Amazing.

Thanks for all the support, love, wishes and prayers over the years. The kids are ecstatic as Grandma and Grandpa are here visiting from Oklahoma and Nana and Pawpaw will here this weekend. I predict a lot of spoilage.

I won't be so dramatic as to post "birthday" pictures today, but enjoy a couple from shortly after they came home (when they would have been full term):




And a goofy picture from this morning when Grandma gave them Doughnuts for breakfast (What else are Grandma's for? Amirite?)


 And a couple of silly pictures:




Friday, October 25, 2013

Walkin' and Rollin'

In his short life, Ollie never had a chance to walk, but he definitely loved to roll.

To honor the memory of Ollie and all of the other SMA kids lost to this terrible disease and to promote research and build support for those families and children still battling the disease, the Families of SMA Carolinas Chapter will be holding it's first ever Walk and Roll event.

We've received so much love and support over the years from friends, families and strangers worldwide but we would like to ask for just a bit more. Please consider a small donation to support our fund raising efforts or even start your own team!

Click here to go to Ollie's Team page.

Thanks.

Neil, Rebekka, Penelope and Isaak

Additional details on the event can be found here:
http://www.fsma.org/Fundraising/EventsCalendar/index.cfm?id=8080&eventRedirect=1&type=1154



Monday, August 5, 2013

Happy Birthday Little Man

36 hours to be born.

363 days to live an all too short life.

1 Beautiful Little Boy.

We love you.

We miss you.

We will never forget you.

Jakob Oliver Mastin.

Ollie.

Our Son.











Wednesday, November 28, 2012

Penny and Isaak at Play

It's been a while since there was an update on the munchkins. Chalk that up to being insanely, crazily busy at all times.

ALL. Times.

For now, let it suffice to say that Penny and Isaak are doing great, running us ragged, running their preschool teachers ragged, and being 100% 2 years old. I hope to have more pics and highlights up in the not too distant future (hopefully not 6 months or more!).

Ollie's Park

This post won't be long, but I thought I'd take a moment to highlight something that means a lot to us. My parents live in, and my Dad is the Operations Manager of, a community called Powder Horn Mountain outside of Deep Gap, NC. It's in a beautiful spot in the northern mountains. During the many (but at the same time, far too few) days of Ollie's Tale and the early, terrifying, days of the twins, many of the members of this community were incredibly supportive with time, effort, money and love. They supported us and even more so they provided love and care for my parents (and still do).

Not long after Oliver passed away, it was decided to name the playground at Powder Horn in his memory. This was an incredibly touching gesture and means more than Bekka or I can clearly communicate. To know that the little guy will be remembered and that many children over many years will get to play in a way that Ollie never could, warms our hearts. Two of those children are, of course, our own.

Penny and Isaak at Ollie's Park

The playground is currently in the process of being upgraded thanks to donations of equipment and supplies from my parents and Bekka's parents (check out the very, very orange crawl tube!) and a major donation from the Powder Horn POA. Just as import was the contribution of time by local volunteers and the efforts of the maintenance staff to do the work. This little park is looking spiffier than ever.

Last weekend Penny and Isaak christened the park with a play date, just before we hit the road to come home. As you will see in the photos and the video (especially the video), they had a blast.

Thank you everyone.

Sunday, August 5, 2012

4 Years ago Today

After 36 hours of labor, this little guy finally showed up via c-section:


The next few months were so unbelievably happy.


The memories of those times are overshadowed in many ways by the last 8 months of Ollie's life, but he was and always will be our first child. And he was a delight.

We miss you little guy. You brought a lot of smiles into the world and paved the way to for a beautiful sister and handsome brother.

4 years since you were born, 3 years since you moved on, yet so many moments are laser-etched in our memories. You were a special one.

Love,
Mommy and Daddy


Monday, April 30, 2012

Happy Birthday Day Two You!

I noticed traffic is up a bit today and I want to pop in to acknowledge that, yes, our little ones are TWO.

TWO-TWO year-olds running around like crazy.

Being happy.

Being cute.

And yes, being mean.

We love it, but it is about to kill us (Note that 2x2=4 - I think they are about 4 times the work).

This weekend, we'll hopefully have a longer post with pictures, status updates and the latest vitals. Let it suffice to say they are doing well. Penny is turning into quite the talker, picking up words everyday. Isaak is a bit behind on that front, but he knows how to get what he wants with signing and gestures and just enough words to help.

Both show no fear and are climbing/jumping/running/falling/going boom with the best of them!

What a long way to have come since that crazy day 2 years ago...a long, long way.

Tuesday, February 28, 2012

Pictures? Pictures? Wait, what?

And VIDEO!?!

What could possibly be going on here.

It's been months since we've put anything up on Picasa so tonight I took a bit of time (precious, precious time) to put up a few pics AND a few videos. I know, it's crazy.

The twins are growing gangbusters right now.

They are rambunctious.
They are crazy.
They are hilarious.
They are running amok.

In short, a lot of fun and a lot of work. Mommy and I are mostly keeping up with these nutty kids, but it's not easy. Penny is picking up a couple of words a day while Isaak is more the strong, grunting type. He definitely knows what is going on and is starting to try to talk a little bit. I'm sure they will both be jabbering away in no time.

We hope there will be more soon, but in the meantime, enjoy the pictures and the video. The video is from our point and shoot (it was at hand), and it's not edited at all. One day I will find the time to do that.

For kicks, go take a look at the February 2011 Album. Just wow. It's amazing how fast the changes come at these young ages.

First the pics! These include Isaak's first professional haircut and playing in the park. As well as some really, really nifty pictures that Bekka took in the kitchen.

Penny and Isaak - February 2012

The short videos can be found below. We have a ton of video that will probably never see the light of day and I hope to edit things together a bit next time, but for now, enjoy it for what it is!

Penny and Isaak - 2012 Video


Sunday, January 1, 2012

New Blog Name?

Hi Everyone - I'm not sure how many regular readers we have due to lack of updates, but we have been really thinking about moving posts regarding the twins and our crazy life revolving around them to a new blog. Ollie's Tale will forever remain as a source of info on SMA and the suck thereof, of Ollie's life and related, but it really seems like the twins and our current life should have it's own existence...any ideas?

Thanks for all the support of the years!

Monday, December 19, 2011

Holy %#*! where did the time go?

I decided to see when the last post was on the blog and realized it was September 1st.

It was about bodily functions.

When that post was made: 


  • Penny wasn't walking.
  • Isaak wasn't walking.
  • Real words had not yet been spoken (Penny has about a dozen, Isaak maybe 8).


Now we have running, pushing, shoving, taking, giving, smacking. All the craziness of toddlerhood.

Wow is it exhausting.These guys are blast and a challenge

I know we've said it before, but we really do intend to start writing again. If nothing else, a blog is like a public diary of events that you have recorded for yourself, not just for the world at large.

Oh yeah, we have cute pictures. Lots and lots of them. Videos too. If you are on Facebook  you probably have seen some of them, if not, I'm going to get some up over the holidays (whether that holiday is Christmas or Independence Day, I'm not yet sure)

.

Thursday, September 1, 2011

Epic Vomitus

Penny puked tonight.

Well, more realistically, Penny recreated the Exxon Valdez spill with the living room carpet acting as the ocean, partially digested milk substituting for crude oil, daddy acting as an oil covered baby seal and mommy as the guy in the yellow suit cleaning it all up. Chunks of meatballs and green beans played the role of tar balls just in case we maybe wanted to pretend it was the BP Gulf spill.

30 minutes later and Penny has new clothes. Daddy has new clothes. Mommy has new clothes and the carpet is now very, very clean in 3 locations. The boppy is still on life support.

Penny hasn't spit up much in her young life. Really, maybe a couple of dozen times in 16 months. Contrast this with little Isaak. I'd wager his count is closer to 2000. (He was 3 for 4 today. Struck out in the bottom of the ninth when his bunt rolled short and was picked up by the catcher).

That being said, I think the sum volume of ejecta might be about equal. See, Isaak just casually - vrpps. Some spit-up comes out, we wipe it off. Once in a while an immediate outfit change is needed...

Isaak is Old Faithful. Not the most dramatic of events, but a regular and known quantity.

Penny pukes like a food-poisoned Orca...*

And with that, we are back on the air.

*Disclaimer - I have no idea how a food-poisoned Orca pukes. I can only imagine it's gruesome. Probably involves baby seals.


Update: Now I feel kind of bad. Every time Penny has upchucked before has been gag reflex related. This appears to actually be illness. Bekka is off to the pediatricians office right now. She vomited 2 more times and has diarrhea and hasn't had a wet diaper since last night.

We had a great night. Or not.

Update 2: Shot of Zofran at the doc. Seems to be keeping stuff down now but the back-end isn't happy yet. Also had a good wet diaper, so it appears dehydration has been averted.

Friday, August 5, 2011

A Reflection from Getty's Mother


When Ollie was diagnosed with SMA, our world changed forever.

Strike that.

When Ollie was born, our world changed forever.  His short life changed many worlds, not just his mama's and his daddy's.  I think Neil is right about Ollie being too much for one vessel.

On Oliver's birthday, I want to share with you a post from a mother who's world was changed when her daughter, Getty, was born.  Kate recently wrote about the one year anniversary of their "d-day" or diagnosis day.  What she wrote really resonated with me and I hope it will with you, too.

Happy Birthday, lil' dude!  We love you!



A Reflection From A Mother

30 Jul 2011

From Kate:

I have had an entire year to think about this day, the anniversary of Getty’s diagnosis.

I remember what we were doing that day before her 4 month check-up at noon. I remember what I was wearing, I remember packing the small diaper bag, I remember the weather outside, I remember everything.
I remember the pediatrician appointment being rather routine. I remember the nice discussion we were having with our doctor about Getty. I can’t stress how routine it was. And in a moment right before we left, the doctor made one more quick check on how Getty was bearing weight on her legs and the entire game changed. She did another test with her reflexes and then another to look into her mouth to see the movement of her tongue, all the while Mark and I just sat back as parents not thinking anything was wrong. Then for some reason I started to look at our doctors facial expression. She started to have this really intense look on her face and then it seemed to turn to concern. In a way I was trying to ignore her because in my mind nothing could be wrong with Getty. We hadn’t noticed anything wrong so how could she find something we were not already privy to.

She finished her exam and sat back down in her chair. She paused and then told us that she was concerned. “I don’t want to tell you what I think it is, because you both will go home and google it. I hope I am totally wrong and you get mad at me later for adding such stress to the situation, but I am going to make an appointment with a neurologist to have Getty seen today.”

As I write this, those emotions just come back in a wave of terrifying proportions. We left the room, Getty snug in her car seat and we made the trip home only to wait for the next appointment. I laid Getty down in our bed and we just snuggled together. I could not restrain myself, I cried and cried and cried. I didn’t know what I was crying about really, just the notion that something wasn’t right was terrifying me. Getty looked like a normal 4 month old child. What on earth could it be? I stopped thinking and concentrated on her sweet little face and I just started talking to her. I started to bargain with her, like she in some way had the power to change the outcome of this situation. I told her that she couldn’t leave me. I begged her not to leave me. Her sweet blue eyes just looked back at me with such comfort. I held her for hours until it was time to go to the next appointment. 4 o’ clock came and we were sitting in another doctor room. The neurologist came in and did similar tests as our pediatrician had done. He sat back in his chair as our pediatrician had done and then he told us what he thought. Before he spoke though I can only imagine what was going on in his head. How do you phrase a sentence like this so a family understands but in the same breath is manageable to digest? He did pause for some time and I remember thinking to myself that he doesn’t think we could handle that maybe Getty won’t be able to walk? “Does he think we are shallow enough to not handle news like that, bring it doc!” I was already getting defensive and I had no idea what he was going to say.

“Getty has Spinal Muscular Atrophy. It is a genetic progressive disease that targets the muscles. I believe she has type I which means it is the most aggressive.” The room was silent. No crying, no screaming, no nothing, we were in complete shock. The only thing that I was able to muster up was, “how long do we have?” His quiet voice responded with, “1-2 years on average.” More staring and more silence continued, all the while Getty was laying on the bed gurgling sweet coos to us.

He offered the same consolation, “I hope I am wrong, and I hope you call me later and yell at me for being so wrong.”

I was never able to make that call because he was right, Getty had SMA and Mark and I had given it to her because we were carriers. We unknowingly gave Getty a terminal disease. We gave Getty a disease that will continue to weaken her body. We gave her a disease that will compromise her swallowing. We gave Getty a disease that will compromise her breathing. We gave Getty a disease that currently has no viable treatment or cure. We did this!

So now what on earth does a family do? How on earth does one digest this kind of news? How on earth do you move on with life?

Well I guess the answer is, you just do and that is what we did. You get through one day, the next might not be so great, but the next day might.

Our lives will never be the same since July 30th, 2010.

I wrote soon after her diagnosis a phrase that I like to reflect on from time to time. “What can I say, life as we know it has changed forever. For better or for worse, we will stand together. I am honored to be mommy to the best little girl in the world. Miss Getty we love you!”

This helps me get through some very difficult days. But that is what we are doing, standing together through good and bad. No day is similar to another, there is no security that tomorrow will be here, so we just live everyday like it is seriously our last. It is although, no longer doom and gloom. In fact I would argue that I have never lived life with such fulfillment as I do now as a mother and as a human being. I would have obviously wanted a different outcome, but now I wonder if that would have been possible without one? I am still searching internally with that answer, perhaps I will never know.

What I know for sure is that the love I have for Getty is a love I never thought I was capable of. She makes my soul whole. She has the ability to comfort with the most gentle coos and touches. She is so thoughtful and such a strong-willed little girl. I am so in awe of her power and zest for life. How can such a little being be so wise and teach her parents such life lessons at such a young age? I thank her every day for choosing me as her mommy. I am so lucky.

I hope for those reading this post take in to account a couple of things. SMA does not care who you are. It doesn’t care if you decorated your nursery with cute bedding and beautiful furniture. It doesn’t care if you had dreams of your child one day following in your footsteps and kicking around the soccer ball. It doesn’t care if you were subconsciously dreaming about future milestones;  high school, college, wedding. All it does is take. 1 in 40 are carriers. That is over 10 million people alone in the United Sates. SMA can certainly be anyone’s reality. A simple carrier blood test can give you the knowledge you need to make the best decision possible for your family. It is seriously as simple as a blood test. Most doctors don’t even know what SMA is so you can’t assume they will offer this test to you, you need to ask, even if there is no family history. There usually never is.

Having said that I believe it is a choice to allow SMA to defeat you. I am in constant battle with our SMA monster that lives in our home. He is here and lives among us, but he does NOT define Getty in any way shape or form. Getty is, Getty. She is a robust little lady who loves life. Perhaps it is not the path I would have wanted for Getty, but it is what is, and we fight everyday for her. We believe that there is hope for her life and for other children with SMA. You have to hope. We believe we will see a treatment and/or cure in her lifetime. We believe that SMA will become more mainstream and lose its “orphan disease” title. There is nothing “orphan” about the #1 genetic killer of young children. Whomever designated SMA with that title certainly got their facts wrong and has done a huge disservice to this disease. Orphan, to me, implies insignificant and there is nothing insignificant about SMA.

On the eve of National SMA Awareness Month, I want to thank everyone that has helped spread the word about SMA. Whether you have received a Tell 5! package or you have learned from SMA by reading our blog or other great SMA non-profits and families around the US, I think it would be safe to say that we all thank you.

No family should EVER be given the diagnosis of SMA. No family should be given the dire statistics of 1-2 years of life expectancy. No child should have to have their respiratory compromised due to a degeneration of muscles.  We need to keep fighting for awareness and we need to keep fighting for a cure. Getty and her friends deserve nothing less. That is why we fight so hard. I want to see Getty attend high school, I want her to graduate from college, I want her to get married, I want her to have a full life and an extended one full of experiences. Getty deserves that.

Getty said “dada” the other day and Mark and I were over the moon. Will more words follow? We have no idea, but we are so thankful for “dada.”