Wednesday, January 15, 2014

Hibernating

I had been hoping it wouldn't come to this, but it looks like it has become necessary, if not critical. This flu season is becoming progressively aggressive, so we're going to have to make sure that everyone that comes in close contact with Norah, or even in our house, is up to date on their flu vaccine.

The truth is, I didn't get my first flu shot until I was pregnant with Norah. After her diagnosis, my doctors stressed that she could have respiratory issues (ha!), so we needed to make sure our family was protected. I have received the shot every year since, and so have Harper, Jeff, and Norah.

In our lives we are always weighing risk and benefit. Some people have allergies or sensitivities that result in a choice against the flu vaccine. (You can get a preservative-free version, though there are other allergens too.) Others may not fully understand what can happen if they get ill. I truly hope that everyone does research on both sides of the topic to make a fully educated decision on whether or not vaccination is right for them. A good place to start is the CDC's website. We understand that our family lives in this unique world where we are apt to hear more scary details about what the flu can do to otherwise healthy, youthful people (hospitalization, heart and lung ventilation, even death).

I just know that for my family, we need to increase our "herd immunity". Jeff and I have decided that, for our family, we cannot afford risks. I will not tell anyone that they should or shouldn't get the vaccine. I may tell them to consider it, but I will not tell anyone that they have to. However, our company will be contingent on it. Our family has had to live in separate places for far too long to have to take any unnecessary risk of having to live that way again. For those that do not vaccinate, we still hope to keep in touch via other means, and look forward to coming out of hibernation in April!

Tuesday, January 7, 2014

Two Hundred and Three Days

Norah has been home for 203 days. That's just shy of seven months. I have been distracted from blogging by our new life at home. I spend every day grateful for our life together as a family, at home. We have our routines, and that helps us manage the level of crazy. We were not quite so organized at first. Of course, we are still a work-in-progress, but what family isn't?

Most days, I still have moments when I am caught off guard by my emotions. I look around me, and see what I've been longing for. Just about every morning, Harper wakes his sister with his enduring volume of a 5-year old boy. I hush him, but secretly love the normalcy of it. Norah and I have quiet time together while Harper is at school for a few hours. Today, it made me sob. It is difficult to describe; my tears aren't quite tears of joy or sadness. As I type, I gaze down at my daughter. She's lying on the carpet while gravity feeds her through her gastric tube. She fidgets with her toes, enamored with the Princess and the Frog (one of her favorite movies). She has no voice with the trach, but her fingers dance with babble like so many other kids her age with a hearing loss tend to do. She's learned so much sign language in the last few months. I look at her in awe. In awe that she is really here. In awe that I don't have to miss her anymore.

I think of what we would all be doing this time last year. Norah would probably be getting her bath at the hospital, a mess after being fed by her speech therapist. Harper and I would be getting dressed, with me counting down the hours until it was time to go visit our girl. I think of my aching heart. I think of Harper hiding from the hospital employees. I think of cuddling and holding my girl tightly, trying to squeeze in every bit of affection I could in our time there each day. I think of Jeff's extra long days: commute, work, then time at the hospital. By the time we got home, it would be quite late. We'd be scrambling for dinner and to get Harper in bed at a decent hour.

In so many ways, our life now is more difficult. I don't get out much. Something as trivial as picking up Harper from school is a huge production with medical equipment. I have learned to juggle a ton in my arms and strapped to my shoulders. I have learned to trip over cords, tubes, and wires without falling down or pulling on Norah. I manage her equipment and supplies. I manage all sorts of mail such as people saying we owe them money to medical records and appointments. Yes it is hard. That is just the tip of the iceberg. All this is done while standing in Norah's doctor, nurse, CNA, medical transport, respiratory therapist, physical therapist, occupational therapist, and speech therapist. And of course all of these daily things are made much more manageable with the help and support of Jeff and some select friends and family members. You know who you are. :)

But the single thing that truly makes all of these things doable is the love and gratitude we have for finally being together under the same roof. This love makes it almost easy. I look back down at my girl, playing with the fabric on the couch with her feet now. She dances to the movie's music. She is so happy at home, and has come so far.

This post is a scrambled mess of thoughts, but I felt like I had to get it out while I had a spare moment. By the way... Our first round of holidays together at home was PERFECT. 

Thursday, November 21, 2013

Happy Miracle Birthday, Norah!

I interrupt this blogging hiatus to share my thoughts on the second anniversary of a very significant day.


My dearest Norah,

It has been exactly two years since that awful day. Your daddy describes it as both the worst and best day. He's right. We all stood together, teetering on the edge of life.

That day lives in my mind so clearly. Maybe it always will... Or perhaps it will fade a bit over time. But right now, I choose to recall it with clarity. It reminds me of where we came from, and all that we have. It reminds me that our love can do amazing things. The four of us are in this together, and we lend strength to one another without hesitation or sacrifice. 

These last two years have been amazing with you. I am so thankful that things happened the way that they did. If I had it to do all over again, I wouldn't change a thing. This is our story, and I love it. Thank you for being the bravest person I know, and certainly the strongest. You continue to amaze and inspire me. 

I love you.
Mama

Tuesday, October 22, 2013

It's Happening

'Tis the season for goobers and viruses, which means it's also hermit season.  We don't mind though, because the kids are both doing amazing. Harper is in love with school, and has already learned so much. Norah is taking huge leaps, too. 

For awhile now, she would get around the house by scooting on her bum. This was tricky while tethered to her ventilator. She had some successful trials off of the vent with a little attachment that moistens and warms the air and bleeds in a little extra oxygen. So we decided to take a big leap. On Sunday, we let her wear this attachment (referred to as an artificial nose) all day. She did amazing. She also did amazing all day Monday. And she'll do it again today. I put her back on the vent for "naps" and overnight, since she definitely still needs it while "sleeping". So this is a huge step. HUGE. 

We have also dropped her "dinner" tube feeding, as she has been loving meals by mouth at dinner. We've even been able to graduate from her eating on the floor (a familiar place), to the high chair. It's been a lot of work to get her to eat by mouth, but it's happening. It's all happening. 

Tuesday, October 1, 2013

I get by with a little help from my...

Today I did something probably long overdue. I met with a clinical social worker. The best part? She came to our house as part of the Medicaid waiver program. We already began to scratch the surface of my challenges, and I'm genuinely looking forward to meeting with her every other week. 

We talked about an array of things, and she was ecstatic to hear me rave about the relationship that Jeff and I have. Jeff and I aren't just husband and wife. We are partners. We are best friends. We laugh, giggle, flirt, cry to one another, vent to one another, comfort each other, and work together like peanut butter and jelly. Our strengths and weaknesses compliment one another so perfectly. We work so well because we came into this with a strong solid foundation. I could tell that hearing all of this was a breath of fresh air for our clinical social worker.

What else do "I get by with a little help from..."? The rest of my family and friends. Thank you all for such love, support, and understanding. As hard as it is for me to live in Utah, I sure am surrounded by amazing people, near and far.

Friday, September 27, 2013

Enough

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.
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