Friday, September 27, 2013


It's been a rough couple of weeks for us: a hospital admission, pretty bad colds for all of us, impossibly painfully tight finances accompanied with lots of unpaid time off work, a huge unresolved misunderstanding with one of my family members (who's love and support I need right now more than ever), dietary issues, and now to cap it off, a really hard-to-swallow questionable diagnosis from one of Norah's doctors. He thinks that she needs spinal fusion surgery at the very top of her spine (C1 & C2). This is huge. This is life altering, and totally risky... and I just don't fully trust in the diagnosis.

So we are going through the motions for a second opinion in Delaware. Yep, Delaware. We are sending her radiology images to them to see if we can prevent a trip across the country with a girl that does not travel well or light. I'm not holding my breath. So, why Delaware? It's all for this brilliant man. His entire population of patients are those with a huge variety of skeletal dysplasias, where as the doctors here only have a small handful of patients with Norah's condition (the many different skeletal dysplasias can be vastly different from one another). So we don't just need specialty care - we need sub-specialty care. There are few places in this country with experts on skeletal dysplasias. People from all over the world travel to see this doctor, and with good reason. It's unfortunate that so few specialists understand Norah's condition... but we are so grateful for those that truly try (like our ENT). So if a costly trip to Delaware may save our girl from an irreversible invasive surgery, I'm all for it. She may still need surgery... but even if she does, I'll rest much easier knowing that only the best hands and minds are taking care of our girl.

So why the title of this post? I've had enough of being sad. I've had enough tears. I can't sustain it anymore. I'm putting on my big girl panties and facing issues with my head up. I'm going to focus on my health. I'm going to take care of my family. Yes, there will be moments of sadness, but I will hold onto the beauty and good in our world. I won't let others get me down. Jeff and I had a wonderful talk last night about what we want, how we want to feel, and how we will achieve our goals. We're so optimistic right now.  And what better teammate than my Jeffrey? I've had enough of the blue, and am ready for happier days. This seasonal change is the perfect time to start, since autumn is my favorite. I'll close this post with the motto of special needs families everywhere: I can do hard things.

Monday, September 23, 2013

Pennies by the Inch Campaign

Miss Norah the Brave was selected out of thousands of Primary Children's patients to be this year's featured story for the Pennies by the Inch campaign. It is their only door-to-door fundraiser, where her story is now printed in 500,000 brochures. Her story is of hope, bravery, and love, and isn't over yet. She has a long, wonderful future ahead, that just happens to include more surgeries, hospital admissions, ambulance rides, x-rays, labs, treatments, etc. But it also includes countless laughs, cuddles, sass, and lots of love.

Our girl is incredible. We're honored to have been selected as the featured story this year. You can see the story included in the brochure here. I encourage you to consider a donation, even if it's just a penny... because every little bit adds up. With our 10+ months that we spent in the Pediatric ICU at PCMC, We have directly benefited greatly from the donations given to this campaign. The staff at PCMC is wonderful. They saved Norah's life time and time again, and we will continue to lean on them for fantastic care that is delivered with such a personal, caring touch. 

Wednesday, September 18, 2013

A Quick Stay

That was a quick one. We were discharged from the hospital yesterday. It hasn't been the first time that I felt a nagging tug that they were going to make us stay. It is more the sort of feeling you get in a nightmare than a true suspicion. My brain knew they wouldn't make us stay, but my heart didn't quite get the message. I suppose that comes with having spent close to two years in the hospital.

Norah is doing much better now that we have albuterol to open up her lungs. Yes - the same albuterol given to asthmatics. She doesn't have asthma, but she sure benefits from the bronchodilator. Norah is so happy to be home. That night in the hospital, she (we) only slept for two hours then an additional hour and a half. The crazy girl fought sleep during the day, too. She was too worried that the masked and gowned people would come do something to her in her sleep. Of course the coughing and crying didn't help.

I'm so thankful that I listened to the mom-voice in my head. I simply knew she was going to need to go in. And I listened before things got too scary. What did it turn out to be? Rhinovirus. Yes, the common cold. But for us, the common cold is scary. It used to always mean a PICU stay. Norah is getting stronger, but apparently a cold still means a stay in the hospital. It was a mostly inevitable kindergarten cootie. I just wish I could program everyone's brain about illness prevention with hand hygiene, covering coughs and sneezes, sanitizing surfaces, etc. Alas, I know that I can't expect everyone to do it. So we'll continue to do our best to protect ourselves.

Thank you all for your well wishes these past couple of days. Though we'll be mostly hiding at home until we're completely better, we are definitely on the mend, and glad to be home.

Tuesday, September 17, 2013

THAT Feeling

It hit me while waiting for Harper to be dismissed from class. At about 1120 yesterday, I got the horrible feeling that Norah would be admitted to the hospital. She was starting to show hefty viral symptoms, and was inconsolable. I spent much of the day on the phone (in between kindergarten homework), and it was decided that Norah should at least go in to see her general pediatrician in Layton. 

To my surprise, at that very moment, one of my best friends Jaci was standing at my front door. We rushed to the pediatrician, but were late anyway. During the course of the appointment, Norah began to deteriorate. By the time we were loaded into the ambulance, Norah's heart rate was peaking at 180, and she was on 6 liters of oxygen. 

Though she stabilized a bit on the way there, she slowly became worse and worse. We decided to err on the side of caution by admitting her. I'm so glad we did. She had a rough night, spending more time crying and coughing than actually sleeping. 

So here we are just waiting. Waiting for her to get past this cold so we can take her home again. We were two days shy of three months at home without any admissions to the hospital. But here we are.. Hopefully not for long. 

There is a huge ray of sunshine though. My darling friends, the Packs, welcomed their three gorgeous daughters into this world. They are perfect and they are beautiful. They are at the hospital next door, but my desire to for them to be safe and healthy far outweighs my urge to run over there and snuggle on each of them. Hopefully they get to go home soon! 

Monday, September 16, 2013

Checking in

Yes, things have been beyond busy. Harper is loving kindergarten, and Norah is blossoming at home. She is more affectionate, sassy, and mobile than ever before.

Right now she has a cold, which, while dangerous, will hopefully be recovered quickly without any trips to the hospital. Her suction and oxygen needs have gone up, but lets just hope it stays manageable. 

We are still so appreciative of life at home with our complete family. Harper will randomly talk about how we get to "keep Norah". He often talks about how much he loves her, and how beautiful his sister is. 

Though blog updates may be sparse, you can always peek in on my Instagram photo feed to the right on the (non-mobile) site. Thank you all for your love and well-wishes!

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