*Welcome, Welcome!*

Welcome to our little corner of the world! I’m Heidi, I’m married to Kit, we have six little ones keeping us busy ranging in ages from 12 down through 3. They’re adorable and amazing and wild and wonderful!

In 2005 our third child decided to show up four months early at a whopping 22 ounces and give us a good scare. This blog was created to keep family and friends updated through our 4 months in the hospital. You can read a bit about his NICU story here.

We’ve since archived those years but last fall we started sharing again because of some new adventures. Ben’s eyesight has been slowly declining (this was expected due to complications from his premature arrival) and we learned he had far more visual field loss than we realized. He started a wish list of places he would like to see and things he would like to do before he loses more vision.

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SPORTS!

I had the opportunity to take Ben to not one but two professional sports events in Dallas.

First up, he received a pair of tickets to game 4 of the 2014 NBA Playoffs featuring the Dallas Mavericks vs the San Antonio Spurs. Short story, the Mavs squeaked out a win in the last minutes of the game forcing the series to go into game 5 to the Spurs home team advantage. Exciting game!

But the real fun was soaking in the sights and sounds of a Ben’s first professional sporting event. Seriously, what sounds! Every chair had a noisemaker of some sort in it, and though it was Ben’s first game and he didn’t know any differently, this was the rowdiest, most rambunctious sporting event I’ve ever attended. Ben loved it!

This was also the day after our first story aired on WFAA Channel 8, so Ben was being recognized by many many kind people offering Ben some of the freebies that were in the seats for the fans. The nice woman at the concession stand even gave Ben a jumbo Slurpee on the house. The Mavs made a new young fan that day. He still wears his freebie fan shirt around. It’s a lovely shade of blue.

A couple days after that, a friend of mine who works with the PR department for Dallas’ local pro soccer team, FC Dallas, got us into a game vs the NY Red Bulls. Besides Ben, I also took Mo and C to the game. I think they all especially enjoyed this one: they all played in a junior soccer league in Denton for a couple of seasons. While we don’t watch many pro sports in our house, they actually played soccer so they understood more of what was going on down on the field.

The real fun was up in the stands, though. For every bit as rowdy as the Mavs fans were, the soccer fans were doubly passionate about their home team. After a couple of legitimately bad calls by the ref against FC Dallas, the kids were introduced to some new words prompted by the FC Dallas spirit squad and chanted through the stadium.

The home team lost that day from a last-minute penalty kick, but the kids got a 99¢ refill with the jumbo Slurpee cup Ben got at the Mavs game, and everyone had a lovely time.

Our many thanks to the Dallas Mavericks and FC Dallas support staff who heard about Ben’s story and worked to give him some wonderfully fun memories.

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UPDATED & Condensed Wish List!!

Realistic or not, here’s his list! :)

England & France*
Germany
Italy
Greece
China
Japan
Canada
Australia/New Zealand

California (northern and southern)*
Las Vegas & Hoover Dam
Parthenon in Tennessee
Mouth Rushmore
Yellowstone
New Orleans

snorkeling
surfing*
ice skating* (more!)
rock climbing* (more!)
skiing
sand dunes
river
a bakery that makes “yummy pastries”
toy factory
Weird Al concert*
Great Wolf Lodge*

*These are the ones we are discussing to see if we can make happen next.

The ones that are in the works – can you believe all of these wishes coming true?? It’s amazing and Ben is ecstatic and we feel so blessed:

Grand Canyon
Alaska & the northern lights
Seattle
DC
Children’s Aquarium
how ice cream is made
Fort Worth Science Museum
Fort Botanical Gardens
waterfall
chocolate factory
cave
Alamo & Riverwalk
Fossil Rim Park
Heard Museum
bike store
video game company
Christkindlemart
Nutcracker
ICE! exhibit
Farmers Branch Historical Park
Log Cabin Village
Kimball
FW Water Gardens
Bass Hall
Central Park Frisco
Dallas Farmers Market
FW Modern
(There are a couple things we’re keeping quiet due to surprising the kids, but I’ll post those when we tell them.)

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Lone Star Park – Horses!

Ben’s wish list included the hope of seeing a variety of animals and he’s been very fortunate to see many recently (the zoo, Sharkarosa, etc.) However, I don’t know if any were as beautiful as the race horses we saw at Lone Star Park in Grand Prairie. They invited us to come out and see the race horses (and enjoy a delicious buffet!) and it was such a fun day!!

We pulled up front and Stacey met us and lead us inside, up the elevator and into this gorgeous dining area overlooking the track. Just the view was worth visiting there! We had tables reserved right up against the window (as well as a tv so Ben could see close up everything that was happening.) It even had a sign that said “Ben’s Wish” and when we looked into the program Stacey showed us race four – it was named Ben’s Wish!! And we were going to go down to the track to get a photo of that race with the winner!

The only hiccup being Ben’s little sister thought this meant she could RIDE in the race, and her three year old self was not amused when I told her she couldn’t actually ride the “pony” she picked.

After reminding the kids that they must eat something healthy before hitting the dessert, cake, and ice cream bars we let them loose on the buffet. It was delicious – C loved the enchiladas, B loved the salmon, Kit and I both thought the build your own pasta bar was fantastic. (We went back for seconds – so, so good.) There was Blue Bell ice cream with toppings, a huge variety of cakes and pies, cookies, strawberries, trifle, cobblers, chocolate sauce… oh, and a really great salad bar but the dessert kept distracting me. :)

Then of course there were the horses! We came downstairs for the third race and watched it from the railing and it was breathtaking, seeing those powerful horses racing past. Even just walking down the path where the horses are lead towards the railing – all of it was stunning. The kids were enthralled. (Though admittedly they picked which one they wanted to win based on which they thought was prettiest, but we weren’t making any bets so that’s okay.) The winning horse came in and was RIGHT THERE, we could reach out and touch it, but they remembered I told them NO reaching towards the horses and they behaved. :) We headed back inside for some water then came out for race four, and just before it started Stacey introduced us to Scott, the president of the park. He asked the kids if they would be interested in watching the next race (Ben’s Wish) from INSIDE the track. Um, yes??!!! So off we walked on the track, crossed over and got inside the track (and let the kids play inside the starting gate, which I told them was not a bad idea to have at home to contain them.) They hopped out, the horses were brought in and we stood feet away as they launched out of the gate.

I told Ben that just for a second he should close his eyes and remember the sound of the horses as they raced past. It was something I will never forget, and I hope he always remembers. While many of these experiences are focused on the visual, we want Ben to use ALL of his senses to collect these memories. When he remembers these races someday I want him to “hear” the sound of those beautiful animals and think of the smell (ha!) and the touch and all of the ways he was able to experience it – beyond the visual.

Once they’re off they pull the gate out of the way and we needed to cross back outside of the track before they came around. It was so neat, and Ben had the best smile on his face.

We saw them cross the finish line and then got a photo with the winner and the kids were able to touch the winner! (Me, too, I wasn’t about to miss that chance.) Then we went back inside to enjoy the buffet again and eat way too much ice cream. J, our five year old, couldn’t decide if he wanted a sundae or cone – they gave him both. He wisely admitted later that he probably should not have eaten three servings of ice cream. :)

Oh, and I was too slow and missed a piece of pecan pie at the dessert bar, but when I got back to our table Stacey was standing there with the chef and a beautifully plated piece of pecan pie he had brought out for me. It was so, so kind (and so YUMMY!)

When we were back inside for the following races I had Ben do the same thing – I told him to close his eyes just for as second as the horses were getting close to the finish and listen, to the cheering crowd and laughs and excitement and to remember this moment and then open his eyes and watch the horses dash across the finish line. Judging by the grin on his face I think it’s cemented in his memory as a magical moment. :)

To everyone who made this possible and especially Stacey for reaching out to us and coordinating it – thank you.

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Camel Kisses & Selfie

The first selfie we tried the camel put its head on my shoulder! Then the camel tried kissing me, so we stayed a bit further back for the next selfie attempt:

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BFD in Flower Mound

photo 1After hearing about Ben’s story we were invited by the folks at Bar Fun Dining in Flower Mound to come enjoy lunch and some game adventures. The kids had a blast – almost as much fun as Kit had. ;)

They were very excited to see the welcome on the sign as we pulled up, and then Cory gave each of them a game pass card – swipe to play. Oh, they swiped! We pulled them away from the games long enough to eat, and they loved it all – that was the best tomato basil soup I’ve ever had, though I lost half of it to Livy and they were kind enough to bring me more. :) For dessert they brought out plates of cheesecake cannoli with ice cream, which Livy asked me to NOT share with her and she was quite confident she could eat it all, thank-you-very-much.

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It was a ton of fun and a wonderful, relaxing, yummy lunch. (Thank you, Cory & Molly! We’ll be back for sure to try that key lime pie-in-a-jar!)

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A Couple of Galveston and NASA movies

The kind Flight Director asked the crew of the ISS to say goodnight to B. Hit it full screen and take a look at the love feed from orbit.

https://www.youtube.com/watch?v=iFihO6Xicd8

And I threw together a little slideshow of our Galveston and NASA trip, if you’re interested in that sort of thing.

https://www.youtube.com/watch?v=6lKl7iJehmg

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We Won’t Be Stopping

10410286_691261707586797_5828425792027922505_nTo answer a few questions we’ve been receiving…

But first, some background!

We have six kids, so historically family vacations aren’t exactly relaxing for us parents. :) Nor are they inexpensive, so until last year all of our trips were to stay with my parents (first in Germany* where they lived for many years, then in Kansas where they live now.) The grandparents love our wild crew even when we invade, and the kids adore playing with them and doing adventures.

*The Germany visits were back when we had just two kids, as my parents moved back stateside when I was pregnant with Ben so he’s not had a chance to go there. Plus, I could handle flying with two kids – more than that was intimidating to me.

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Links!

(I know I’m missing some interviews, please feel free to leave a link if you find some!)

WFAA original story

Follow up with Janet St. James

Katie Couric show

Alaskan Surprise with Janet St. James

Huffington Post

HLN

News Nation with Tamron Hall

TODAY with Tamron Hall

People.com

Albuquerque visit (each station had their own crew/story):

KOAT

KRQE

KOB

WFAA Six Flags visit

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ROP FAQ

We’ve been asked often why Ben’s eyesight is declining, so here is my very non-medical explanation. :)

First, legal blindness is defined as your STRONGER eye having an acuity of 20/200 with corrective lenses. You can have only one functional eye but if it sees better than 20/200 you are not legally blind. (Which means when people say they are “legally blind in one eye” that’s not accurate – that just means one of their eyes isn’t strong. You also cannot be legally blind without your glasses, which I hear- legally blind is defined based on corrected vision.)

The other definition of legal blindness is a visual field of 20 degrees or less. Basically you can only see right in front of you with blind fields on your sides.

Ben sees 20/30 (HOORAY!!) and 20/200 right now with glasses but that is anticipated to change over the years. We knew he was losing depth perception because of the discrepancies in acuity between his eyes and he was patched for years to try and get his weaker eye to respond. He told us last year that weaker eye “doesn’t work anymore” and he essentially relies on just his stronger eye.

Ben is also losing peripheral vision, which is why he qualifies as legally blind now. If his siblings are standing next to them he cannot see them – which was a painful lesson for them to discover, physically and emotionally.

There is also complete blindness when people can only see shapes, or literally nothing at all depending on their eye condition. There is a BIG difference between legal blindness and complete blindness.

Ben’s vision issues are caused by his prematurity and a condition called
ROP. In generations past ROP caused complete blindness for babies born too early and receiving high concentrations of oxygen. They have modified O2 levels and watch saturation closely to make sure babies are getting enough oxygen now for their lungs and brains but not so much that it damages their eyes. (The ROP link above explains how the O2 alters blood vessel growth in their eyes which can cause retinal scarring and detachment.) Ben was so tiny and his little lungs really struggled – he was on a special high frequency oscillating vent for six weeks, conventional vent for another six weeks, then CPAP then cannula oxygen when he came home (with a later re-intubation and vent time for a couple weeks with RSV.) They monitored him so closely but it was a balancing act of lungs and brain and eyes. (Just since Ben was born I also read about changes in saturation level parameters for preemies, but Ben’s case really was extraordinary with his extreme prematurity and lung condition.)

Ben’s eyes were also closely watched with eye exams every two weeks and when he developed ROP it was FAST, one exam was clear and we were so grateful and next exam he needed surgery ASAP. He had stage three ROP with Plus disease. The laser surgery prevented his retinas from detaching so he did not go completely blind, but there is scar tissue that cannot be removed.

The way it was explained to us, as his eyes grow and stretch the scar tissue cannot stretch and the eyesight declines. He loses peripheral vision, colors change, his light sensitivity gets more extreme, and his prescription has to get stronger. He’s higher risk for a retinal detachment, but we try to avoid high impact sports and balls to the face and he has sports goggles. We were warned that because of the scar tissue he could wake up one day with detached retinas BUT we consider that highly unlikely because it’s too awful to consider. (We have talked with preemies for whom that happened but we think it’s pretty rare.) There are treatment options if a retina begins to detach (they can “buckle it” back to the eye) but Ben’s retinas are examined at least yearly and are okay right now. (“Okay” meaning scarred but attached.)

Unless Ben experienced a complete retinal detachment he will maintain at least some vision – he won’t go completely dark. We are clinging to that hope that even as his eyesight declines he will have SOME functional eyesight, despite being legally blind. We were also told that until he is an adult his eyes will keep changing and we won’t know what degree of vision he will maintain.

At this time we are not aware of any future treatment options for damaged retinas. We’ve been asked about transplants – that is just for corneas and lenses, not retinas. Another laser surgery at this stage would not improve things BUT technology changes so fast that we are holding onto hope that new options will be developed. When he is a bit older we will try specialized contact lenses along with glasses to see if that helps improve his acuity and visual field. We are optimistic!

This situation was not a surprise to us – we were told before he was born that blindness was one of the many challenges micro-preemies may face. We feel incredibly grateful that losing his eyesight is Ben’s only remaining effect of his painfully early arrival. However, we know Ben – he doesn’t let anything slow him down! He’s going to continue to surprise and amaze us like always.

Still have a question? Feel free to ask!

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52 Weeks

Ben and his siblings have been talking a lot about paying it forward, and how they could show their gratitude for this tidal wave of support. We’ve talked about doing two things – local acts of service, and global acts of giving. They picked two charities that are near and dear to them – clean water initiatives and feeding the hungry. Our oldest suggested that for each donation our family has received in the mail in the last couple of weeks that we’ll do an act of service and/or a donation as a thanks.

After opening the mail today we discovered we’ve received over 50 letters with kind notes and a check to help with wishes. (There have been countless other acts of service through phone calls, emails, tickets being sent, businesses reaching out to us, and the fundraising website – each of which has been a HUGE blessing! But for this list I just had the kids count up the letters.) :)

It was 52 letters of support that are helping in a very tangible way to make dreams come true for a little boy – and that little boy wants to do help others. I think that number is significant – 52 weeks in a year.

I also realized what the date is – it was 9 years ago this weekend that our Ben finally came home from the NICU to us, after 109 days he was strong enough and healthy enough that he came home to us. Granted, he was on oxygen and monitors and multiple medications and being seen by his doctors at least every week, but still – he came home to us nine years ago this weekend. I cried when I realized it was our anniversary of his homecoming.

SO, that’s the perfect time to kick this off! Once a week for the next year Ben and his crew are going to pick their act of service, whether it’s helping a local family or serving in our community in some way or making a donation. We’re officially starting our year of paying it forward! Feel free to join us, whether big or small, find a way to serve the people around you and make this world an even better place.

I think that’s what I’ve taken away from this last month – it’s been a whirlwind and my head is spinning, but it’s been reiterated over and over for me that this world is full of such beautiful people. We set out on this adventure wanting Ben to see this glorious earth, but what’s been the most stunning for me is the outpouring of love from around the world. There is so much goodness and kindness, and each of these letters and postcards and emails is reminding us of that over and over.

Thank you!

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