Thursday, September 11, 2014

2nd Annual Carolinas Chapter Cure SMA Walk-n-Roll

Good Morning!

It's hard to believe it's been a year since our very successful first event. The SMA community in the Carolinas really appreciates all of the support that was shown and we are pushing forward to make this event bigger each year.

Like last year, the event will be held at Anderson Point Park in Raleigh.

Unlike last year, it's a little earlier in the fall and also being held in the afternoon in the hopes we will not have a freakishly cold morning (sub freezing!). 

Bekka has now set up our team for the event. If you have the time to come and walk or can donate to the cause, many children and adults with SMA as well as their parents and caregivers would be most appreciative. It's too late for Ollie, but so many still need help.

The walk is scheduled for October 11, 2014 from 1:00-3:30 at Anderson Point Park in Raleigh.

You can visit Ollie's Team Page to join or donate or you can create your own team if you like. General information on the walk can be found at the event's main page. 

We hope to see you there.



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.