Briggs was born on May 14, 2011. The pregnancy and delivery overall went well. He had a little trouble breathing at first but caught on after a few hours. He was 8 lbs 3 oz and 18 1/2″.

He loves, loves, loves to eat. Most of all, he loves eating his hands. Or Brinley’s hands. Or anything that resembles a hand, boob, formula, or rice cereal. Or anything else that might come within his perimeter. See the video–don’t mind the water filter commercial or cackling.

He loves, loves, loves to smile. If he’s not tired or hungry, he’s smiling. He’s a sweet little guy.

He’s really easy to deal with. Not much gets to him except for when uncle Cameron yells at the TV during a football game.

He loves kicking in the bathtub. We’re sure to have a flooded bathroom after each bath.

He wiggles like he’s got Parkinson’s shakes. He’s always looking around and curious about what’s going on.

He loves blabbering and making fart sounds (both simulated and the real deal).

He loves playing with his hands. He thinks they’re the coolest things ever…well, after food.

He’s a sweeter pie and just what we ordered.

Brinley is really improving with her anxiety with strangers (strangers being anyone but Mom and Dad). She actually lets Grandma and Sister-in-law hold her without her crying and holding her breath.

Brinley’s starting a music and movement class at Kids on the Move. She’s also learning to communicate with a joystick.

Brinley is still growing…but not outward. She struggles to keep her food down and is in the 2 percentile in weight for her age. First ’cause Briggs ran us out of all our food. Second because she likes to throw up any crumbs Briggs might have left behind. She throws up generally once or twice a day, oftentimes in her crib in the wee hours of the morning. Over the next few weeks we hope to convert her G tube (feeding tube) into a GJ tube which runs down to her intestine. We hope that solves the vomiting…and our narcolepsy.

She also grinds her teeth. We’re working on getting caps on her back molars.

She also has scoliosis (curved spine) and she now wears a torso brace that wraps around her back, stomach, and chest to help keep her straight.

She’s warmed up to Briggs quite a bit and sometimes even thinks it’s funny when he eats her hand.

We’re glad to have both of them as part of the fam. They’re sweet kiddos and make for a fun home.

Over the last two years we’ve become frequent fliers at your hospitals. Our daughter has an undiagnosed Leukodystrophy and, as such, reacts abnormally to or has a difficult time fighting off the variety of ailments that beset her. She is tube fed, immobile, and unable to speak. A week ago we were on a family vacation in Idaho and she became very sick. She began vomiting frequently and couldn’t retain the smallest amounts of liquid. Her skin felt hot and she appeared extremely lethargic. We took her to the IHC emergency room in Burley, ID to get her the help she needed.

Three times while in the emergency room we recounted the events that had occurred leading up to our arrival and the history of our daughter’s Leukodystrophy. Eventually tests were ran which showed low glucose levels and an extraordinarily high heart rate–both symptoms of dehydration. She was given fluids and glucose to a point where she seemed to be responding well enough for us to cut our vacation short and make our way back home. They directed that if there were any problems in the meantime to be sure to take her to the nearest emergency room.

The trip back home is approximately four hours. During the trip home she moaned in a way that seemed to express pain but we figured it may be a result of the trauma she had endured over the past day. When we got home, she was acting very similar to how she was before we took her to the hospital earlier. She was very unresponsive and resisted opening her eyes or making any movement. When we tried giving her a few drops of water in her mouth using a wet sponge she immediately vomited. Again her heart rate was elevated and her skin felt hot. It was obvious something was wrong and she needed liquids fast. We rushed to the IHC emergency room in American Fork, UT about five minutes away.

The lobby was empty and it did not appear as though many, if any, patients were being attended to within the ER. I showed the secretary our unresponsive daughter and requested that fluids be provided quickly and that we already knew she was dealing with dehydration. Again we were asked to explain the events that had occurred–not only since our trip to the IHC hospital earlier in the day but also the events previous and the circumstances surrounding her Leukodystrophy. We were asked to explain the same to the nurse who took her vitals, weight, etc. Ten minutes had passed and no liquids had been requested.

We were brought back to the emergency room where a different nurse cheerfully chatted with our newborn son who we had brought in the car seat, asked what his name was, and when he was born. By all means, she had a heart of gold and I would love to bring in my photo albums so she could get acquainted with my family tree, but my daughter continued declining and, as though I should have to point out, we’re in the emergency room! Again, we were asked to recount the history of events and details of her Leukostrophy. We made sure this nurse, too, was aware our daughter needed liquids ASAP.

Twenty minutes into our hospital visit the doctor came in. Again we were asked to recount the history of events and details of our daughter’s Leukostrophy. A half hour had passed since we entered the emergency room and no fluids were to be seen. On the flip side, I was able to partake in the reminiscing of recent class reunion hilarity that ensued at the nurse’s station while my daughter continued on the decline. Nay, not only that, but I was able to graciously provide my credit card to pay for care we had not yet received, look for insurance cards that turned out to already be in the system, and for the fourth time answer such urgent and diagnostic questions as “And who’s your employer?”

I pitched a fit. I made a scene. I’m sincerely not one to get upset easily or desire to make any sort of disturbance especially in a place of healing. But that day I did everything in my power to ensure your employees knew we were in an emergency room and there was an emergency to be treated. The doctor’s response: “Your child isn’t going to die if we don’t give her fluids right away.” Is that so? Were those your findings the last time you treated an undiagnosed Leukodystrophy patient suffering from severe dehydration the previous doctors thought they had under control? Why are we in the emergency room at all then? Who cares if her energy is sapped to render her unable to avoid aspirating her own vomit? Who cares if her system continues shutting down or her body starts eating away the little muscle she has. Send us home with a bottle of water or maybe I can call in my extended family and we can all kick back and talk about who our employers are! Hell’s bells–I’d venture at least 95% of the people going into the emergency room wouldn’t die if we sat on our hands for a while. Let’s all go have a coffee break, shall we?

After finally getting her hooked up to fluids and reviewing some of her tests she took an ambulance ride to the IHC Primary Chidren’s Hospital in Salt Lake City, UT. We repeated the routine. Two more times we described the events. Two more times we gave the history of her Leukodystrophy. Two more times I answered who my employer was and a handful-dozen other questions I had answered several times previously that same day. Our daughter was hospitalized for three days following to be treated and recover from what appeared to be an intestinal virus.

I realize this may be entirely ignored or we may be discredited as over-dramatic parents. Or, on the other hand, you might consider the improvements that could be made, a higher standard that could be achieved, or that patients might be able to arrive at your hospitals with the expectation of timely treatment and professional service.

Sincerely,

Aaron Hardy

Holly’s about to pop and any day now we should be welcoming the fourth member of our family–a baby boy. We’re excited to expand our family and have another personality in the house. I won’t lie though…I already can’t wait until he sleeps through the night.

Brinley got her wheelchair today which is awesome. She finally has a place to sit that will keep her back and head in a decent pozish. It even has pink zebra prints and her name embroidered on the seat. I think she’ll be a lot more comfortable. Now we’re trying to figure out how to keep her and us mobile. We’ll be installing a ramp for our front steps and trying to figure out a plan for getting a chair lift installed in our van.

The whole fam’s been through a couple few sicknesses over the last several months. Holly had bronchitis, Brinley had RSV, and I had a couple weird cold/sinus things. We were really trying to avoid RSV with Brinley because she’s not made to handle infections like that. Fortunately, we had her nose, throat, and lungs suctioned out a couple times a day at the hospital and she was able to clear up in about a week.

A couple months ago I changed jobs and now work at Adobe–specifically the Omniture business unit located in Orem. It’s gone well so far. Thirteen years ago I started developing websites using Adobe and Macromedia (bought by Adobe) software and never would’ve thought I’d be working for them. They have a great line of best-in-class products and I’m glad to be an employee.

That’s it for now! I’m sure we’ll be back with more once the baby arrives!

Check out all of the photos under Summer 2010 (including Brinley’s first trip to the zoo!)

These first few videos are of some games we play with Brinley at home. They’re pretty silly but you can see how much she loves them!

These are from our trip to the zoo.

Video Courtesy of KSL.com

Father’s Day 2010

And just for fun some of my favorite Aaron and Brinley pictures…

Kisses

Beach

Cuddles

Classic Aaron

Some of the highlights of the sealing day were….

1)  Brinley was at home with Grandma

2) Road trip to Manti with Katie and Spud

3) The perma-grin Tracy and Kevin wore all day

4)  Going to the temple with my family

5) Witnessing the sweatiest bald head I’ve ever seen in person (yep that’s you Kevin)

6) Pizza Pie Cafe buffett till I puke

7) Playing sports late into the night with the Clarks

8 ) Finally going to bed absolutely exhausted