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Sunday, May 12, 2013

Congenital Heart Night at the Ballpark w/MOHF

All, good afternoon and Happy Mother’s Day to all of you mothers out there.  We hope everyone is having a fantastic Mother’s Day Weekend and enjoying this perfect weather (in St. Louis anyway).  We wanted to check in with everyone who bought tickets and/or apparel one last time before the game this coming Saturday night at Busch Stadium.  Many of the tickets/apparel were shipped to you last Tuesday and the remaining tickets/apparel will be shipped no later than this Tuesday, May 14th.  By Friday morning, May 17th, if you are missing anything, please let us know. 

 

Note for those of you who purchased visors – when we received the visors last week, they were not what we expected.  The logos were much smaller than anticipated and we did not love the way they looked, so we made the decision, due to time limitations and with the help of Dominion Promotions (www.dominionpromotions.com), to replace each visor with a Cardinals MOHF ball cap.  So those who ordered the visor received the visor AND the ball cap.  If this does not work for you, we’re more than happy to refund the money you spent on the visor.

 

As for the game, here are the important details:

 

-          Gates open: ~ 2 hours before the game time or around 4:15pm

-          First Pitch: the Cardinals suggest if you definitely do not want to miss it, you should arrive by 5:30pm

-          Game Start:  6:15pm

 

Special thanks again to those of you who donated 61 tickets to families at the CICU.  Local television station, Channel 2 (Fox affiliate), will be doing a follow-up story to the story they did on Oakes on his 1st Birthday last year.  We’re hoping we can coordinate it so that the story documents MOHF donating the tickets to the CICU families as it happens.

 

We will see you all at the game.  I need to hear some good, loud cheers when I’m out there, so let Oakesie hear you when the announcer mentions him and the foundation!  Also, we’re told that throughout the game, the Cardinals will post the MOHF logo and a picture of Oakes, from time to time, on the video scoreboard.  So be on the lookout for that too.

 

We are looking forward to a fun night at the ballpark!  Thank you all. 

 

Love,

 

Greg, Becky, Isla

 

Wednesday, May 1, 2013

MOHF - 5/18 Cardinals Game

Good evening family and friends.  One last reminder on our upcoming Congenital Heart Awareness Night at Busch Stadium, Saturday May 18th.  We are trying to get all tickets sold by end of the day tomorrow as we owe the Cardinals ticket money Friday.  If you are out of town and cannot make the game, consider buying a ticket or two to donate.  Becky has promised to personally hand-deliver your donated ticket(s) to a family in the St. Louis Children’s Hospital CICU to help make their day if only a little bit better.  For ticket purchases, visit our events page and click “Reserve your tickets here” (http://www.mightyoakes.org/How-You-Can-Help/Events.html).  We have sold almost 500 tickets, an utterly astonishing number considering we’re a “small”, family-and-friends type of foundation right now with still so much room to grow over the coming years.  We’d like to sell 700 total tickets, but we realized that was a stretch goal.  Whatever the end number is, we’ll all be sitting in the same 4-5 sections together!  We cannot thank everyone enough for their continued support of the foundation we started in honor of our precious Oakes. 


We are still attempting to identify a place to meet before the game, for those so inclined.  I will keep ticket-purchasers updated as the event gets closer.  By the way, most of the t-shirts are in and they are AWESOME!!  We’ll be distributing tickets and apparel shortly.  It is bound to be a magical night.

 

Love,


Greg, Becky, Isla P. (the brand new 4 year old today!)

 

 

Sunday, April 14, 2013

MOHF Cardinals Game 5/18/13

Friends and family, hope you’re having a great weekend.  I was “told” to send a reminder to everyone on our huge fundraiser coming up at the May 18th St. Louis Cardinals game.  Yours truly (Greg) will be throwing out the ceremonial First Pitch in honor of Oakes and all those impacted by Congenital Heart Defects at Congenital Heart Night at Busch Stadium.  I will have Isla with me out on the field and hope to be sporting a custom-made Mighty Oakes Cardinals jersey.  The deadline for purchasing tickets through MOHF is still a ways out – May 3rd.  We still need to sell a couple hundred more tickets to reach our goal so feel free to forward to your friends and families so you can all make it a great night out together.  Certainly, the Cardinals will be the main entertainment.  My split second throw with the stadium half full is just a warm-up for the fun part of the night!  And no, I’m still not practicing….

 

Now, the big reason for my email today is regarding the special edition, one-time only Mighty Oakes St. Louis Cardinals apparel.  The Cardinals have given us special permission to use their logo for some special apparel and we took advantage of the occasion to design some fun shirts and hats for the evening.  MONDAY, 4/15 (TOMORROW), IS THE LAST DAY YOU CAN ORDER APPAREL!!  We need to place our order tomorrow night and will only be ordering what you have purchased.  So if you’re thinking about it, be sure to pull the trigger no later than tomorrow.  Becky detailed this on our blog, but I’ll copy the details below as well.  But, more importantly, I want to copy a blurb from our blog about where your money is going.  Here is one example (of many) of how your generosity is helping others.

 

A couple of weeks ago we were asked to help a family that is in St. Louis from a neighboring state. This family has 2 babies. Twins. One perfectly healthy, one with a complicated little heart that is requiring intensive care at our beloved SLCH. The parents are stressed to the max worrying about their sick child, but their stress is double. It doesn't matter if their sick little love bug is having a good day or not there is another little love bug that needs them and requires all of the attention that any healthy newborn demands. To complicate things, the Ronald McDonald house, which is a quick 10 minute drive from the hospital, is undergoing renovations and they are not accepting new or long term families. There is, however, a small hotel that is connected to St. Louis Children's Hospital. A quick walk through a maze of raised walkways connects the two structures. When we learned about this special family whose attention is so stressfully divided we immediately agreed to help. So Mighty Oakes Heart Foundation is helping to fund their stay at the hotel.  I can only imagine the chaos of healthy twins. I cannot begin to wrap my brain around how this family is managing the stress of one healthy newborn and one in the CICU. But, I feel honored that we can help. I am thrilled that we can help lift some of the burden from their shoulders. I hope that by being able to stay so close to the hospital this family is able to relax as much as they can and enjoy their time together.

 

For you out-of-towners and Cardinals fans, to buy apparel only (no tickets), simply go to the link below (control/click to go to the site):

 

http://tmohf.org/index.php/store_items/for_event/2nd_CHA_Night_at_Busch.html

 

To buy tickets or tickets and apparel, go to this link:

 

http://www.mightyoakes.org/How-You-Can-Help/Events.html

 

And here is the merchandise.  I have bought the classic t-shirt (I’m nearing a full rainbow in MOHF t-shirt colors now), the dry-fit polo (notice the Cardinals logo on the sleeve) and the ‘ringer’ t-shirt that I LOVE. 

 

 Our classic cotton MOHF T-Shirt in Cardinal red

 

 

A dry fit Polo with both MOHF and Cards logos

 

 

A super cute polo for kids

 

 

A visor with both logos

 

 

Dual logo hat in both adult sizes and kids

 

 

Our special game day, ‘ringer’ T-Shirt

 

Let me know if you have any questions. 

 

SAVE THE DATES FOR EXCITING 2013 EVENTS:

September 14, 2013 – 2nd Annual 5K Run

October 27, 2013 - Rock n’ Roll Marathon

November 16, 2013 – Event of the Year, 2013 Dinner-Auction, in the Star Light Room at the St. Louis Chase Park Plaza!

 

Thanks everyone.

 

Love,

 

Greg, Becky, Isla

www.babyortyl.blogspot.com

www.mightyoakes.org

Friday, April 12, 2013

An important reminder and a heart warming story to go with it!

I operate from lists. I think in lists. If it isn't on the list it isn't getting done. And, ohhhh, the joy of scratching something off of the list. If you are a list person too, please add to the top of your list for this weekend: BUY MOHF GEAR!!!

SUNDAY is the final day that you can order our once in a lifetime, limited edition, super stylish Mighty Oakes Heart Foundation/ St. Louis Cardinals gear.

We were given very special permission by the St. Louis Cardinals to use their logo for this event. Once these shirts are ordered we will not be re-ordering. And we are only ordering what we getting orders for now, so if you even kinda, sorta are interested in some of our MIGHTY gear - go with your gut and order NOW!!

One reason to order is because this purchase/donation is tax deductible. Even more, as with all of our fundraisers, Mighty Oakes Heart Foundation is keeping all of the profits from our shirt sales to help families like ours who are caring for a little one that has a CHD.

Here is a story that will illustrate just where those profits are going. I hope this will warm your heart.

A couple of weeks ago we were asked to help a family that is in St. Louis from a neighboring state. This family has 2 babies. Twins. One perfectly healthy, one with a complicated little heart that is requiring intensive care at our beloved SLCH. The parents are stressed to the max worrying about their sick child, but their stress is double. It doesn't matter if their sick little love bug is having a good day or not there is another little love bug that needs them and requires all of the attention that any healthy newborn demands. To complicate things the Ronald McDonald house which is a quick 10 minute drive from the hospital, is undergoing renovations and they are not accepting new or long term families. There is however, a small hotel that is connected to St. Louis Children's Hospital. A quick walk through a maze of raised walkways connects the two structures. When we learned about this special family who's attention is so stressfully divided we immediately agreed to help. I can only imagine the chaos of healthy twins. I cannot begin to wrap my brain around how this family is managing the stress of one healthy newborn and one in the CICU. But, I feel honored that we can help. I am thrilled that we can help lift some of the burden from their shoulders. I hope that by being able to stay so close to the hospital this family is able to relax as much as they can and enjoy their time together.

Tshirt sales and babies is the CICU are really worlds apart in the big picture of what is important in life, but every little bit count. Those small numbers add up and allow us to help very deserving and needy families in very big ways

So, here are the details, you can buy our gear here:
http://tmohf.org/index.php/store_items/for_event/2nd_CHA_Night_at_Busch.html

We will stop selling gear on Sunday BUT WE WILL CONTINUE TO SELL TICKETS to the Baseball game for several more weeks. And you can buy those tickets here:
http://www.mightyoakes.org/How-You-Can-Help/Events.html

Just to show you what we are selling:

 Our classic cotton MOHF T in Cardinal red


A dry fit Polo with both MOHF and Cards logos


A super cute polo for kids


A visor with both logos


Dual logo hat in both adult sizes and kids


Our special game day Tshirt


Thank you for your ongoing support. Thank you for supporting our family, but for also supporting MOHF so that we can support others. The peace and warmth that comes to our lives because of the work that we are doing is therapeutic in the biggest way. We hope to see many of you at the baseball game in May and we hope to see everyone there in our awesome gear!

Mighty love, 
Becky

Monday, April 1, 2013

This weekend

The St. Louis Go! Marathon is already here and we wanted to share some of the plans for the event:



Go! Saint Louis MOHF
Support Team



Donation Information:
Please use the following link to support the MOHF Go! Saint Louis Team:
 
Shirt pickup:
Shirts can be picked up at Provalo in Webster Groves on April 5th from 5:30-8pm. Provalo will be throwing a huge party for the team, including a band, sidewalk chalk, a bubble blower, and specials on dinner! Paisley, the amazing boutique next door to Provalo will also be donating 25% of sales that day to MOHF.  Please bring $20/shirt cash or a check made out to The Mighty Oakes Heart Foundation when picking up your shirt.
 
Parking Information:
Arrival Time:  6:30 a.m. – 7:00 a.m.
Parking can be difficult to find near the start and finish line and the lots and streets will fill up quickly.  If you choose to park near the “Course Cheer Location” (see below) it may be easier to find a place to park.  This location is about a quarter mile away from the finish line.  Parking lots near the “Course Cheer Location” can be found at 18th & Chestnut and 20th& Chestnut.
 
Course Cheer Location:
Arrival Time:  7:00 a.m. - 7:30 a.m.
Meet on the south side (the side that is closest to Market) of Olive between 16th & 18th streets to support race participants as they run by.  Be sure to stand on the south side of the street so you will not have to cross the course to get to the finish line location.  This will also assist the MOHF runners as they will know where to look for you as they run along Olive!  This location is around the six mile marker on the race course, MOHF runners may begin to pass through this location at approximately 7:35 a.m.
 
Finish Line Location
Arrival Time:  8:20 a.m.
Leave the Olive Location around 8:10 a.m. and walk approximately a quarter of a mile to the Market & 15th area.  The finish line area will be very crowded with spectators so the MOHF support team may move west on Market, to find a less crowded area, to increase visibility.  Stand on the north side of Market to avoid having to cross the course.  If you are unable to meet at the Olive Course Cheer Location, feel free to join the MOHF support group here!
 
Family Reunion Location:
Arrival Time:  9:30 a.m.
After the runners complete their run they will enter a secure area that is not open to those not running the race.  After runners exit this area, they will enter the family reunion area.  The family reunion area is organized by letters; runners typically meet their family under the letter of their last name.  We will meet under the “O” in honor of Mighty Oakes.  After the half marathon runners and relay team runners have met the MOHF support team in the family reunion area, we will all move to the “Finish Line Location” to support those running the full marathon.
 
Additional Information:
“Be Mighty” Signs:  Feel free to create your own MOHF “Be Mighty” sign to show your support!  We will also be decorating signs Friday night at Provalo.
After the race, there will be a team reunion/celebration at Llewelyn’s in Webster.  Hope to see everyone there!
                       

We wanted to be sure to thank all of our friends that have helped to organize this event, especially Sarah and Rob Skinner, Kate Rycenga, Cindy Underwood-Oleshak, Joel Bittle, and Stephanie Harris. Your kindness and thoughtfulness is humbling. We are blessed to have you as our friends, and I know if our children are watching us now, they will grow up to be thoughtful and kind as well. And of course, MIGHTY! And to everyone that is running on Saturday, we love you, thank you and we don't have to encourage you to BE MIGHTY, we already know you are!! XOXO, Becky

Sunday, March 17, 2013

Email Update from Greg

Good evening, friends and family.  It is seems impossible that I have not sent an email to this group since last July, but I think that is the case.  I know some of you are subscribed to our blog (www.babyortyl.blogspot.com) and get updates as they’re posted, but many of you are not, so I wanted to be sure to update you on the foundation.  I have also added some folks to the list.  There are many events coming up this year that we wanted to make you aware of so you can mark your calendars.

First of all, as you may know, it was Oakes’ 2nd birthday a week ago today.  Our family celebrated by visiting St. Louis Children’s Hospital’s Cardiac Intensive Care Unit (CICU) and presenting a large donation of toys, books, mats (for playing w/your baby on the ground; these are in HIGH demand there), a bunch of boppies (again, a very high demand item in the CICU) and, of course, cupcakes for the staff.  Little did I know, they had two surprises for us.  One, was a gorgeous and delicious cake that Kym Galbraith made for us, complete with the MOHF tree logo on top (Kym is starting a cake business on the side which will be incredibly successful!)  After some cake, a few of the staff took us to a crosswalk that connected a couple buildings on the campus.  They said they had tried to think of a great gift for Oakesie’s birthday and then Kym asked us to look down from the crosswalk.  There, in the middle of a gorgeous lawn of grass was a newly-planted white oak tree, complete with heart and star ornaments dangling in the rain.  It was Oakesie’s Oak Tree!  Somehow, the CICU staff had received approval from SLCH’s board and Washington University Medical Center to plant a tree in Oakes’ honor.  There is a perfect sign in front of the tree that reads “In celebration if the precious life of Oakes “Oaksie” Lee Ortyl.  A teacher and a brave, spirited warrior.”  I couldn’t have said it any better.  Of course, this was an extremely emotional moment, a crazy emotional few days, in fact, as his birthday approached.  The location is perfect as it sits directly under Room 9 in the CICU, Oakes’ home for much of his life.  The tree is visible from Room 9 and several other rooms in the CICU.  A white oak tree can live for 300-400 years.  I told Isla that she can take her kids and grandkids to the tree some day and tell them about their Uncle Oakes.  As much as I was dreading the day as it approached, the gift that the staff and hospital gave to us made March 10, 2013 one of the best days of my life.  It was awesomely perfect!  And we cannot thank them enough.  Pictures, of course, are attached.

Ok, now on to the event list.  The first couple require some action fairly fast if you want to participate.  So, let me throw some bullets at you all here:

·         GO! Marathon on April 7th in St. Louis.
o   Rob and Sarah Skinner, friends and new neighbors, had the idea to have a Mighty Oakes GO! Marathon team. 
o   Rob, Sarah and several other of our friends are rounding people up and convincing (coercing, bribing, demanding!) them to run.  There are even options to run smaller segments of a marathon and team with others to accumulate the 26 miles.
o   The team is getting their friends and family to donate to their team and all proceeds are going to MOHF.
o   Also, we are selling very sharp-looking, red, dry-fit MOHF shirts that all the GO! participants will wear.
o   To order a shirt or to join the team, go to our blog (www.babyortyl.blogspot.com) for all of the details, including a picture of the shirt and how to order.  The blog entry will be about the third one down, so you’ll have to scroll just a bit.  The shirts are $20 each and to get the shirts made in time, the last day to order these shirts is Wednesday, March 20th.
·         Congenital Heart Night at the Ballpark – Greg Ortyl throws out ceremonial first pitch – on Saturday, May 18th at Busch Stadium around 5:15pm (an hour before the “real” first pitch).
o   In a most humbling experience, I was asked by Lena Morsch, a member of the Adult Congenital Heart Association and a survivor of a congenital heart defect herself, to throw out the first pitch at Congenital Heart Night.  Lena has been following our story and she has become a good friend over the last couple of years.  I, of course, said yes.  I cannot wait to honor Oakes with Isla at my side on the field.
o   No, I am not practicing.  I refuse to.  By the time they put me in front of the mound so I don’t mess it up, I’ll be 55 feet or less from the 5th outfielder who will draw the shortest straw to catch my throw.  I’ll be fine.
o   We have been asked to sell a few hundred tickets and we have also created fun MOHF/Cardinals gear since the Cardinals have approved of MOHF using their logo.
o   So two ways to participate:
§  Go to http://www.mightyoakes.org/How-You-Can-Help/Events.html, click “To reserve your tickets now” and sign up for tickets and/or shirts/hats (and of course, we have adult AND kids sizes).
§  Go to http://tmohf.org/index.php/store_items/for_event/2nd_CHA_Night_at_Busch.html if you only want to purchase shirts/hats.
o   The game is 60 days away, so we don’t have much time to get tickets sold and distributed.  Once your order is placed, we’ll be putting packages together and shipping them to you (that price is included in your purchase).
o   A couple classic pictures of my family and the Cardinals are attached as well, including the one time Oakes was outside in his last 11 months, when we were able to visit the hospital’s garden on the eighth floor.  Yes, Oakesie was the reason we won it all in 2011!
·         Rock n’ Roll Marathon on October 27th in St. Louis.
o   My sister, Shani, is rounding up a team for this marathon.  Isn’t there a beer-drinking fundraiser we can do?  Why do we have to run until we pass out?  I’ll have to work on that….
o   Keep close to the blog for all of the details.
·         2nd Bi-Annual Dinner-Auction event.
o   Most of you attended or, undoubtedly, heard about our first dinner-auction, the Planting A Seed event held in November of 2011.  There was less than 100 days or so to plan that event, but it was a booming success and the most fun I have ever had at an auction like that.  Of course, most of the credit goes to Ellen Moriarty for managing that event and we had dozens of friends and family help us to raise well over $100k that night.  That was just a warm-up.  This time we have over six months to plan.
o   We are still solidifying a date, but it will be in the first couple weeks of November, 2013, so keep that in mind as we get our ducks in a row.  It will be held in a fabulous, St. Louis landmark location and we hope to bring in over 300 attendees (up from 180 in 2011).
o   We have SO MUCH great information to share – families we have helped, friends we have made, nurses we have spoiled – and we can’t wait for this event!  Stay tuned for more on this….

That is all for now, but there are a couple other great events in the works, but it is too early to announce at this point.  I promise I will not barrage you all with emails, but I will keep you posted on our successes and our upcoming events.  Thanks for listening tonight and thanks for all of your love and support.

Love,

Greg, Becky, Isla Ortyl
Mighty Oakes Heart Foundation












Friday, March 15, 2013

Baseball tickets for sale!!!


Hello Friends!
Back in January I shared that we had been asked to participate in the Congenital Heart Night at Busch stadium and we are starting to sell tickets to that game now!

We have a page set up on our website where you can not only buy tickets to the game but you can also buy some super stylish and super mighty merchandise.

Please check it all out! We will stop selling merchandise in mid-April, so please put this on your to-do list, and get over and make a purchase before it is too late!

We are SO very excited about the game. Greg is as cool as a cucumber when the topic comes up and I start doing a little jig - which is REALLY weird for each of us to react in these ways! Isla seems to follow my lead but then she will get really serious and explain that she DOES NOT want to see Fred bird that day. That being said, I think we will all shed a few tears at the stadium!

  Two Falls ago, Isla in her Cards gear cheering the Red birds on....


 And Oakesie in his....

In the next day or two we hope to share more exciting news about the game and an extra special person that will be joining Greg on the field in the pre-game ceremony. Details are not final so I can't blab about it, but as soon as I can, I will. I think all Oakesie lovers, SLCH fans, CHD supporters and Mighty Oakes Heart Foundation friends will be excited to hear this news.

Ok, so for now.....please go and shop!
Be Mighty and GO CARDS!

http://www.mightyoakes.org/How-You-Can-Help/Events.html

And if you do not want tickets to the game, but only want to shop for some super mighty merchadise you can go to this link....

http://tmohf.org/index.php/store_items/for_event/2nd_CHA_Night_at_Busch.html

Feel free to message me with any questions or issues at all!
Becky@mightyoakes.org

Monday, March 11, 2013

MOHF shirts for sale!

Hello Friends!
I have several posts that are lined up from this week, but to start I wanted to share that we are selling Red dry-fit MOHF shirts for the upcoming GO! St. Louis Marathon.




What you should know about the shirts:

These are athletic shirts and the fit is snug, so if you may want to consider going up a size when ordering. Here is the manufacturers description of the shirt: 100% Polyester Interlock, 4 oz. Cooling Performance Crew. Odor resistant. Stain release. Ultra tight knit resists snagging. Sizes small – 4XL.

AND we do have these is kids sizes small (like sizes 2-4), medium (6-8) and large (10-12).
It is not pictured but "Be Mighty!" is printed in white across the back!


Details on ordering:
We are taking orders now until March 20th.

To order please message me your specifics.(becky@mightyoakes.org) Then go to our website and make a donation. Shirts are $20 each, and if we will be mailing to you we ask that you include another $3. When you donate, please make a note that your donation is for a shirt order and make sure to include your mailing address. Once we get your order and donation confirmation we will confirm your order via email!

Pick up/ delivery details:

If you are in town you can pick up your shirt on Friday, April 5th at Provalo Deli in Webster Groves. Our friends at Provalo will be hosting a Sidewalk Pick- up party for MOHF, including a band, sidewalk chalk, bubbles and dinner deals for everyone! Even if you are not running, please plan to stop by and encourage our GO! Marathon runners who will be there carbo-loading for Sundays big run!

Paisley Boutique, which is next door to Provalo will be gifting 25% of proceeds that day to MOHF, so make sure to slip into Paisley before you head home and pick up something cute for the Spring! You can always call in an order after looking at the website!

About the GO!
If you are running the GO! and want to join the MOHF team, let me know! We are not an official registered team, rather a group of MOHF supporters that will join up on race day to run in honor of Oakes with our fashionable shirts on! Race day is Sunday, April 7th. If you have not registered there is still time! And you can always just do the half if the full marathon sounds like too much!



If you would like a MOHF shirt but do not specifically want the athletic dry-fit shirt, hold you horses! We have been working for months on an upcoming selection of MOHF  merchandise including a variety of Tshirts, polo shirts, baseball hats and a visor. I hope to share more details on this in a few days!

Thank you all for your support, especially our Webster Pres friends that sparked this entire event! We are blessed to be surrounded by friends and family that are always reaching out to us with creative ways to help and get involved!

Be Mighty!
Becky





Wednesday, January 30, 2013

Something else to consider.


I am always thinking about helping others in terms of congenital heart defects, the Mighty Oakes Heart Foundation, and the charities that have touched my life and family recently. But I easily see need elsewhere when I learn about new (to me) charities like this.

http://www.heididrexlerphotography.com/a-way-we-can-help/

Good work, Heidi Drexler!


Saturday, January 26, 2013

One Mighty Requests.


Please pray for my step-mother, Jan Christine. Jan was diagnosed with Breast cancer right before Thanksgiving. She has an agressive form of cancer, but is in the early stages of fighting hard to kicks its uninvited butt. She has been though two rounds of chemo, and will have her third round on Monday afternoon. After four rounds, she will have a lumpectomy and then radiation.

I have not been able to let her diagnosis sink in fully, it feels like way to much for her and my family to face right now. Jan's entire career has been in nursing. She has given herself to caring for others who needed help so badly. We have been praying nightly and daily for her healing. Isla has been focusing her prayers on Gramma getting her hair back. I know Gramma appreciates all of our prayers right now!


We love you Gramma Jan, and are praying that you heal completely. We are sending mighty heart strings your way, and know that our community of friends will be doing the same! XO




Dad & Jan when they came to visit after Oakes' transplant



Isla and I were playing with Oakes, he was smiling and batting at his toys...



....but Gramma Jan stood at the end of his bed, eyes locked on Oakes and just prayed and prayed.



And here is Grampa Bill and Gramma Jan showing Isla how fun dry ice can be!
Makes me smile seeing Isla so small and sweet, and so comfortable around her adoring grandparents.


Tuesday, January 22, 2013

Our Mighty List.



A couple weeks ago I got an email from one of Oakes' girlfriends, Elizabeth. Elizabeth was Oakes' Speech therapist. She was the one that initially sent us home with fancy bottles for him. She later conducted swallow studies and then helped me feed Oakes bananas and pears and carrots. Elizabeth was not only a huge cheerleader for Oakes, but she was always a welcomed, smiling friend to me.


(Of course Oakes loved Elizabeth, she never had needles or things that went "ouch", she came with milk, and food to play with!)

(Trying out carrots!)

(And then sweet potatoes!)

Since Oakes left us this past summer, Elizabeth and I have stayed in touch. She hosted her own fundraiser for MOHF this fall with some of her amazing family and friends, and she just recently reached out to me and shared that she is trying to get a donation for MOHF but needed a list of some of the good work that MOHF has been up to in order to sell MOHF. 

I had been meaning to do this.

It was amazing to compile the list and see all of our work summarized in black and white. I thought so many of you would appreciate this list too. While you are reading the list, I just want to point out that each little bullet point has a rich and enormous story behind it. Or even several stories. In most cases each item represents a very sick baby and a family or families that were desperate, heart broken, overwhelmed, working hard to just get through the day, and because of the donations that we have received from all of you, we were able to help these families. 

Here is our Mighty List:

-Providing families with gas cards
-Providing families with gift cards to stores like Wal-Mart and Target for essentials
-Providing families with gift cards to restaurants and coffee shops
-Delivering meals to families at the hospital and to their homes
-Delivering care packages to families in this hospital
-Buying birthday gifts and holiday gifts for patients, siblings and parents
-Paying for hotel rooms of traveling families
-Paying for Ronald McDonald bills
-Paying utility bills
-Making mortgage payments
-Paying for moving expenses of one mighty family as they moved hours away to a city that could offer better medical care for their sick child
-Pampering Moms that are usually standing vigil at a bedside by sending them to lunch, for a haircut or massage
-Commissioning a jewelry designer to make custom fingerprint jewelry of children who do not have much time left.  A priceless treasure for any parent.
-Providing mini photo sessions with baby and family. Again, something that will last forever.
-We recently found a donor who passed along a Scottish harp to one of the chaplains at SLCH so she could sit in the NICU and calm everyone with harp music (Thank you, Rowan!)
-We have helped other SLCH families in organizing their own fund-raising efforts
-We supported Camp Rhythm this past summer, a local camp for kids with CHD. A place where everyone in the pool has a long vertical scar on their chest.
-We have just started supporting CHD research that his happening here in Saint Louis.

....and if you were at the auction in 2011 and you held your paddle high at the end of the night to only go home with a lighter pocketbook and smile knowing that you contributed to something very special, I think you will appreciate this.

-We have formed a "Spoil the Nurses" committee. On the 10th of every month volunteers have brought treats to the nurses and staff that take care of these special CICU kids. I believe we have been doing this for 10 months now.
-It has taken dozens of meetings, a ridiculous amount of emails, many sample chairs delivered to and from the CICU, several rounds of votes from those Moms standing vigil and staff, but we have 9 beautiful and very comfortable tall stools on order for the CICU. Each one will have a little MOHF logo on it. 
-We have supplied the unit with some educational and developmental toys for patients, with even more to deliver over time.

Along with the list I also have to mention how therapeutic and healing it has been to be able to help families so similar to our. More than once, my day has been turned upside down when I have gotten a call from a Social worker or nurse asking for help. It has been amazing to say "Yes, we can help!" Each time, I think of the friends and family that have entrusted us with their money to do the right thing and help these families.  And each time I have wondered where Oakes fit into this string of events, and if he had anything to do with bringing this family to us. 

And of course, I have to confirm that not only have we delivered these things, and paid these bills, but I KNOW it has been more than that. We are giving other families the priceless gift of HOPE and showing them the power of LOVE. It has been happening. We have been apart of this beautiful circle of event - someone asks for help, we say, "yes", they say, "thank you", we say, "you're welcome" and then it is quiet again until someone asks for help. Honestly though, I think families have been blown away by the foundation's story and by what the foundation has been able to do.

I will say goodbye now, and end with parts of messages from a thankful family that we helped in the Fall. I think every MOHF supporter will appreciate this. This family lost a newborn son to an undetected CHD years ago. Their next child was also born with a CHD and needed emergent care. The family's child was at SLCH for 6 months. When they took their precious child home they were almost 6 months behind on their bills and were about to lose their home. (Their child is thriving at home today, awaiting another surgery)

  • Becky: We are putting a check in the mail tomorrow. Hopefully this will help to get you guys on your feet, and let you save up a bit going into the new year! Hope you are smiling!

    Heart Mom: Actually, I'm crying! Thank you so very very very much! I have nothing to say!

    Becky: Sleep well tonight. We spoke to several people at the hospital about your family, just doing our research and you are all very loved and respected by the SLCH staff. Mighty Oakes Heart Foundation is honored to help you out. Huge heart hugs to you!

    Heart Mom: Thanks so very very very much! As we too love the staff at SLCH! I am very grateful to have received help from MOHF! I hope our sons have found each other in heaven and have become quite the good friends! I really have no idea what to say to you! VERY VERY BIG HEART HUGS TO YOU AND FOR EVERYONE INVOLVED WITH MOHF! 

    And later that day from Heart Dad: Becky this is T, R's father. I told Dr. Eghtesady once that I didn't know how to thank him for what he did for R. Today I need to say the same to you and the Mighty Oakes Heart Foundation. Since we came home I have worked and tried so very hard to get my family out of the bind we were in due to R's hospital stay. To me a simple thank you cannot express my feelings but in the end thank you is all I can say. God bless you your family and The Mighty Oakes Heart Foundation. Again thank you for your help and love.