Apple!!

The title of this post is because when we walked up that’s what Ben yelled – APPLE! Safe to say he’s a fan.

A bit of background for those not familiar with his story – you can read a snippet here and see some photos of Ben just after he was born and in the NICU. Eager to join the party, Ben arrived at just 23 weeks gestation and weighed only 22 ounces (630 grams.) He developed an eye condition because of his early entrance which has caused him to be visually impaired. Thankfully he can still see relatively well from one eye, enough that he can read print up close and uses a magnifier. Unfortunately his vision will continue to deteriorate over time and there’s no way to know how much vision he may maintain.

Not that it slows him down at all!

We were encouraged to give him lots of visual memories before he loses more eyesight so he made up a wish list. We were amused he asked to go see the Apple Store! We told him we weren’t sure when we could make that happen but we would try someday. One morning we woke them up early to “run an errand” and this is what happened next… (more background story is included below the gallery.)

From almost the time Ben could walk he’s been obsessed with our various Apple devices. He would sneak off with them as a tiny toddler and drop them or do other destructive things. He sucked on a few power cords as a baby and shorted them out. He had a super power of finding them no matter how far we hid/buried them away behind the couch. It got to the point that we were visiting the Apple store so often when we walked in they would greet him by name and say, “Hi, Bennett! What did you break??”

Thankfully he outgrew this habit and we’ve not been to the store in years since Apple stuff really is durable. Funny that the other five kids haven’t been able to do any damage when he did so much – we joke Ben was doing crash testing on it, research for his future career at Apple building gear you can’t destroy. I want him to work on shatter proof screens since I broke one of those.

When I was on bedrest a few years back with our youngest child the older ones had a field trip to the Apple store. Bedrest meant we couldn’t all go and sad Ben had to stay home with me. During the trip the kids composed songs with Garage Band and got yellow t-shirts – Ben’s favorite color. This left quite an impression on Ben and when asking about his wish list for trips and places to see he said the Apple store! To get a yellow shirt and ask the Geniuses questions and play on an iPad! We thought that was an easy request to fulfill, though we weren’t sure if we can manage the t-shirts since we’re not an official field trip.

We had mentioned his wish on Facebook because we thought it was so funny and to our surprise learned – wait, apparently we know some people who have Apple connections! They contacted us and asked some questions and started making some plans and were absolutely fantastic every step of the way. While we were hoping to just visit the store and let Ben play at the kid table, the Apple folks had so much more in mind.

Over the last few years Ben’s various vision team members have talked about how wonderful the iPad is as an assistive device. Kit researched and learned more about the amazing technology it has to help people with visual impairments & the long list of apps great for kids with visual disabilities. Even built in features like Siri can make a significant difference in the day to day lives of someone with a vision challenge. We just didn’t know how to make that happen with the budget, so it was something we kept in the back of our minds but hadn’t pursued. Once again little miracles started to fall into place with offers of help, surprises here and there, and so much support and love from friends and family. Suddenly the dream of an iPad for Ben was becoming a reality!!

One night Ben came into my room after bedtime and asked if I could learn more about taking a field trip. We looked online and I told him the field trips aren’t being planned until spring but maybe we could go then? I also told him they don’t sell those special yellow shirts, those are just for field trip kids. We talked about making it happen someday and when he saw the picture of the store online he said, “Wow… awesome!” So he kept hoping to see Apple but knew he needed to patiently wait.

Meanwhile we plotted and planned and this morning we told the kids we needed to run some errands and meet Shannon to return some things to her. Shannon happens to be a dear friend and photographer and she had so sweetly offered to be there to document this experience. There was much texting and coordinating going on as we got up early (before the store opens to the public) and headed out. The kids knew we had a surprise for them but we needed to meet our friend at the mall first. As we walked up to find her what did we happen to see?

The Apple Store.

And what was happening there? Rows of people all dressed in red clapping and cheering and welcoming our family. As you can see in the photos, Ben’s face just LIT UP when he recognized the store. When he realized he was allowed to go inside??? He was stunned. When they greeted him by name? SHOCK! He got a bit bashful as he passed so many people cheering for him. (He later said he felt like a celebrity and wanted to know how they knew his name???)

They did a mini tour & he was allowed to stand behind the Genius bar, which was so impressive to him. Then he asked me if he could play on one of the iPads at the little table like the kids were doing before we left. We sat down and explained not only could he play on one – but the one they had just shown him was FOR HIM. People who loved him had helped make it possible for him to have an iPad of his very own.

Shock. He just sat there staring at the box straight faced. It was probably a good minute before he blinked and asked, “For me?” Yes, I explained – for you to play on not just now but to KEEP. More shock.

The reality set in when they handed him the box to open and he was all smiles. He lifted it out of the box and said, “I get a charger??” Yes, an iPad AND a charger! πŸ™‚ (He’s so easily impressed, I love it.)

Then they spent time talking with him about the assistive technology and zoom and reading books on it and Garage Band and games and Siri. We need to go back for sure to learn more about all of it, Kit said there’s tons we need to explore for Ben. Then I got lots and lots of tight squeeze bear hugs as the reality sunk in for Ben – he got to visit Apple! And tour it! And see a computer and the genius bar and talk to so many sweet people and he got an iPad!! And a t-shirt! Then he told me, as he hugged me tight again, “This goes on my list of best days ever!!”

So to everyone who helped make this possible – thank you from the bottom of our hearts. You made his dream come true, and I know that every single day of his life will be enriched by having this as a resource and tool for independence. Okay, and he’ll just have fun with it, too!

P.S. We’ve been asked how the other kids are handling this situation with B’s vision loss and how they reacted to seeing B get something this big. You can read their responses here.

P.P.S. For our new visitors coming through links to this post – WELCOME! Ben’s been reading your comments and loving every single one. He’s grinning ear to ear knowing that his story is helping other people feel happy. Thanks for your kind words and support! If you have any questions please feel free to contact us – we can be reached at heidi@thadenpierce.org.

Want to see a 22 ounce baby?

We’re often told that it’s hard for people to imagine how tiny a baby is at 1 pound and 6 ounces. We saw him daily and it’s still hard for us to wrap our minds around!

To summarize his story – B was born at just under 23 weeks gestation and was 12 1/4″ long. He was in the NICU for 109 days, came home on oxygen then became sick and went back on the vent in the PICU for 13 days. He had many of the complications associated with prematurity – pneumonia & other infections, lung disease, PDA and ROP surgery, hernia repair, feeding issues, developmental issues with gross, fine motor and speech… he has fought so hard to overcome these challenges and amaze us all. His lingering challenge has been his vision loss, but we know he’ll continue to surprise us with his persistence and creativity as he tackles any hurdle.

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The Boy Who Lived

(If you’ve NOT read Harry Potter then a brief explanation – Harry was the target of the evil bad guy but somehow managed to withstand the death curse thrown at him despite many others being killed by said bad guy. He became know as “The Boy Who Lived.”)

And this is repeat info for some of you but for those of you not familiar with Ben’s story – some background before the punchline. Apologies in advance – I censored a bit, but Ben’s story is not for the faint hearted.

I spent three months of my pregnancy being told I was going to lose Bennett. (In very kind and gentle terms, for the most part.) At 10 weeks we discovered I was miscarrying (again, we had just had our second miscarriage in July then got pregnant with Ben in August.) I was put on bedrest and I was already on progesterone supplements and we were sent to see the OB back up for my midwife then he sent us to the two perinatologists/high risk specialists. We also had a few other ER trips in there for complications (like, oh, my water breaking at 22 weeks) during which time poor freaked out ER doctors and OBs on call at the nearest hospital had to see our ultrasound and tell us we were losing our baby. (We reassured them we had been hearing that for months.) The perinatologist when he first saw my ultrasound called in his partner so they could be check it out – which is NOT comforting for a pregnant mom, let me tell you. They said it was the biggest subchorionic hematoma they had seen in the last decade of their practice. Woo-hoo! We aim to impress. Wiki Link (Essentially my placenta was not cooperating and instead of nourishing Ben it decided to partially detach and just bleed into my uterus, surrounding the amniotic sac. Not cool.) Continue reading “The Boy Who Lived”

The Adventure Begins

We’ve been quiet here, I’m guessing no one is still following along but I needed a spot to document this wonderful and wild journey.

We’ve been pondering (a) where we should take Ben to see and experience things and (b) how to afford it. πŸ™‚ He wants to see the Tardis in England, he’s a huge Dr. Who fan but alas, passports alone for a family are size will cost over $1000. (I still hope to make that happen someday!) It’s also tricky in that with my work I’m pretty much on call all the time – I have to plan vacations literally 9 to 10 months in advance and I’ve got babies on the schedule for next spring and summer already. I can’t just drop everything and go on a trip, but I don’t have more than week off call for months into 2014.

Stateside Ben’s big wish was to see Harry Potter world in Florida. (He also wants to see California, a waterfall, a mountain, snow, I should write up his whole list.) I did some preliminary research and saw tickets for the park would run our family about $1,000, it’s a 16+ hour drive (I am NOT that ambitious) and plane tickets were about $400 each (times 8!) Plus hotel, food, etc, etc. I felt so sad to tell him but I just didn’t see any way we could financially pull that off anytime soon. He said that’s okay – he would be happy with going to visit Legoland or Going Bonkers here in town. πŸ™‚ He’s such a sweet kid… and he had no concept of the money involved, so we’ll be sure to get him to Legoland at some point, too!

We were running Kit to an eye exam and when we came home there was a letter on our door step. I wasn’t expecting anything so I opened it and read the letter – several times, because I couldn’t believe what I was reading and was in complete shock. I think I worried Kit when he saw me crying and saw the FedEx overnight package and wondered what bad news the letter held! Continue reading “The Adventure Begins”

Quick Rise Ciabatta Bread: The Movie!


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Heidi and C worked up this little instructional video for her quick-rise ciabatta bread.

(By “her” I think he means the one I learned from him and Rebecca?? πŸ™‚ )

4 cups flour (I do half wheat)
1 1/2 teaspoons salt
1/4 teaspoons yeast
2 c hot water

Mix all, cover and let sit 8 to 18 hours or somewhere in there.

If you want a same day dough, increase the yeast to 1 teaspoon then let rise at least 2 hours or until bubbly looking. It has a less intense flavor but is still delicious.

When you want to bake flour a cutting board (we use a flexible one from IKEA) and dump the dough onto it, patting into an approximate lump. Preheat oven to 500 degrees (I do 450 as our oven runs hot) with a dutch oven inside of it. When hot, dump the dough ball into the dutch oven and COVER it (this is important.) Cook about 20 minutes, uncover then cook until golden brown on top. Dump out, cool, slice and enjoy! Add some rosemary, garlic & cracked pepper if you want a fantastic savory bread.

Here’s the pan we got:

We bought the Lodge Logic 5-Quart Double Dutch Oven with Skillet Cover – it was comparable in price to others, it’s free shipping on Amazon AND the lid works as its own pan to make yummy, crusty cornbread. Or you can use it on the stove top for cooking, though I’ve not tried that yet because we have a cast iron skillet with longer handle. I like that it has the handles on the side vs. the top because it’s easier for me to grab and flip off when cooking ciabatta bread in a 450+ degree oven. We love it, and if we ever go camping we’ll be set for campfire cobbler. Though I did recently make a cobbler in this in the oven – a dump cake variation, it was delicious. Plus extra iron! I was told to cook in cast iron when pregnant and anemic, for all you expecting ladies.