A Quick Update

Hey folks,

Due to the lack of recent posts, we've had a few queries and just wanted everyone to know that Ollie is doing OK. He's generally been great since the ER trip - but we've been extra vigilant.

The pulmonologist thinks he had a cold for a couple of weeks which lead to the excessive and thicker secretions that led to the ER. Post ER, it was a bit rough with constant cough assist and suction for about a week. My poor sister happened to be here helping out during the last few days and can attest to the challenge of keeping him clear. She did a wonderful job with her favorite nephew ;)

Overall, he's been breathing and sleeping well. He did give Bekka a small scare the other day, but it was NOTHING like the day of the ER trip AND she had all the equipment since she was at home. Being SuperMom, she took care of everything. She was a little "nerve-racked" by the time I got home, but little guy was doing great. It's amazing what you can do when you have to. It's also amazing how quick Ollie is to flash a smile even after being tortured with his equipment. He's such a forgiving and happy little fellow - I think we could all learn a lesson from that.

We *promise* we'll get new pics up on Picasa soon - we have a few exceptionally cute ones (but don't we always).

Ollie had a two-thirds Birthday!

It's hard to believe that it's been 8 months since our beautiful baby boy was born!

Many of our closest friends and just about the entire Wolftrap Road cul-de-sac came out on Sunday (4/5) to celebrate this milestone in Ollie's life with us. Robin made a cute little Easter Bunny cake and the little guy racked up several gifts. It was a pretty big party...

Thanks so much to everyone that came out, it was wonderful to share this day!

Ollie Goes to the ER

So little man gave us a scare this week.

AND had his first ambulance ride.

Around 3:20pm on Wednesday (4/8) I see that Bekka is ringing my cell, never expecting that she's about to say "Ollie is in distress and the pediatrician's office has called an ambulance".

She had taken little guy to get his last RSV shot. By the time she arrived at the pediatrician's office, he was clearly having difficulty breathing. The staff at the office (they really are wonderful!) jumped right into action and began suctioning to try to remove secretions and mucus. Unfortunately, it just wasn't really helping and they ended up calling an ambulance.

I met Bekka at the WakeMed Children's ER around 4. We immediately requested a cough assist as it is a highly effective device for removing mucus plugs. Luckily, before it even arrived Bekka and I managed to get the vast majority of the mucus plug out. Over the next few hours, they took X-rays and blood samples to make sure he was OK and we did several rounds of cough assist and suctioning to try and clear up any lingering issues.

We managed to leave at 8:30pm or so and Ollie has been doing well since then.

Ollie, Bekka and I want to send a big thanks to the staff at Raleigh Pediatrics, the fantastic fire and EMS personnel and the ER staff at WakeMed. What could've been a nerve-wracking situation was kept calm and cool by everyone involved.

How You Can Help Ollie

Many people have asked us how they can help. With the encouragement of family and friends, we have opened an account at the State Employees' Credit Union for Oliver's benefit. Below is the information that our wonderful friends and neighbors have compiled to aid us in this endeavor. Thank you all so very much!

Imagine if soon after your first child was born you were told he or she had an incurable genetic disease which would undoubtedly take his or her life before their 2nd birthday. My friends, Neil and Rebekka Mastin who reside here in Raleigh, are faced with this tragic reality. Their son, Oliver was diagnosed at two months with Spinal Muscular Atrophy (SMA), Type I, the most aggressive form of this genetic disease. Translation: “Ollie”, as his friends and family have come to know him, at the age of eight months has been given no more than a year to live. The slow progression of muscle degeneration that began in his legs when he was two months is quickly overtaking him, and he will eventually suffer respiratory failure.

I would like you to consider giving to a fund that has been established to help pay for the monthly use of critical and expensive medical equipment that will make Ollie comfortable in his final months. Ollie’s parents are working people just like you and me. His Mom’s insurance coverage for him has been salvaged as she continues to work part-time. However, the insurance has certain restrictions that disallow coverage for certain medical expenses.

A small group of Neil and Rebekka’s friends and neighbors have created this communication so that Ollie’s short life can be celebrated rather than endured. Time is expiring and the needs are acute. Please consider giving something today. Whatever amount you can give will be appreciated. What matters most is that we send a clear message of love and hope to Ollie. As he struggles to take his final tiny breaths of life, we want his parents to feel relieved of any unnecessary financial burdens and be able to comfort him in so much as is possible.

Thank you so much in advance for your gift. You may send checks for deposit through the mail or deposit checks or cash in person at any State Employees' Credit Union.

State Employees' Credit Union
6320 Capital Blvd., Ste 101 Raleigh, NC 27616
Phone: (919) 871-0450 Fax: (919) 790-0305

Please make checks payable to Oliver Mastin.

The Credit Union will ensure that the check is deposited into the proper account.

To learn more about SMA visit:
http://www.curesma.org

To help in other ways, contact Robin Banker at
robinbanker@gmail.com

And continue to follow Ollie’s story at
http://olliestale.blogspot.com/


“Hearing a diagnosis of something like SMA is beyond devastating. Life becomes compressed and literally day to day. Every little milestone is magnified a thousand times and every little cough a million. Lucky for us, Oliver has a million candle-power smile that turns on at the drop of a hat that can light up anyone's bad day. Maybe it's because his time on earth will be short, but he seems to burn all the brighter for it.”
Neil Mastin

Neil and I intend to use these funds to help cover Oliver's medical expenses including such things as doctor's visits, durable medical equipment, and medical supplies. Any additional funds will be donated to Families of Spinal Muscular Atrophy, the Muscular Dystrophy Association, or Duke Children's Hospital and Health Center.

Thank you again!