Monthly Archives: April 2014

Here we go! Bring on cast number 5

Like all the castings so far, I’ve dreaded this one just as much. I’m hoping that one of these times the big lump in my throat and the watery eyes will lessen.

As we sit here and wait in her pre-op room Nora is relaxed and enjoying watching her Elmo videos. She has been great so far with all the doctors and nurses who have come in to see her. This in itself is a relief and I’m so grateful.

Just a little while longer till we get started. Lots is prayers and squishy snuggles to cram in.

Stay tuned!

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Day-to-Day Life in Plaster

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We are currently on our fourth cast and boy have we learned a lot by now. Much of it I wish we had known sooner, but isn’t that often how life goes?

Nora adjusted pretty quickly to her first cast. It really wasn’t holding her back from doing anything. In fact, she was developing some serious baby muscles. When we would remove her knit-rite shirt, that’s worn underneath her cast, and she would flex and pull herself almost into a crunch and you could see a six pack muscle outline. I kid you not. Carrying around that extra 2 to 2 1/2 pounds on such a little body is making our baby buff!

Speaking of the shirts, changing these little suckers is not fun nor is it easy but we feel it’s a must with a busy toddler who’s into everything. There was one changing episode where I didn’t think I was going to be able to get a new shirt on. The cast was so tight and it was so hard to dig and squeeze my fingers in between to try and pull it down and into place. After about 20 minutes and a few breaks I finally got it.

We’ve figured out a sponge bath routine that to this day, eight months later, is still a dreaded task. She simply hates just about every aspect of the sponge bath and hair washing. No matter what distractions we have or how many pieces of bribing candy we have on hand, it doesn’t matter she hates the whole thing and screams and cries. She just wants in a big full bathtub. But even though she hates it and fights it, she has, in a way, come to terms with it. As soon as we are done she, all on her own, happily applauds herself and smiles and typically does her happy dance.

Having the cast trimmed or removed is an absolute nightmare. Unfortunately, after four casts we’ve had to have 3 trimmed for various reasons. Being too high under her arms, too low on the hips so she can’t move about normally. The sound of the machine and the way it shakes her entire little body while it’s doing its job is simply terrifying for her. The techs felt so bad one time they went to the hospital gift shop and brought her back a couple of stuffed animals to keep.

We’ve taken her to a closer branch of Children’s hospital just for trimming and removal and it got to the point where she was crying and pleading as soon as we walked into the hospital – she just remembered. Holding your child while they try and cut and tear away at the casting material while she’s crying… No, not crying – screaming, screaming sheer terrified help me screams is just awful. I’ve broke down crying right along with her.

But once she’s settled down after having her casts removed, every time she points to her belly and pats her ribs and has a look of wonder, joy and confusion in her eyes. These casts have become a real part of her and suddenly they aren’t there anymore. It’s almost awe inspiring to witness. With each removal we’ve spent a few minutes afterwards just taking it all in…And that includes endless hugs.

The cast removal appointment is a roller coaster of emotions. I can’t tell you how amazing and incredible it feels to be able to wrap your arms around your baby…Around her body, touch her skin, feel her body expand and contract with each breathe after two months of wrapping your arms around a hard plaster cast. It’s like Christmas morning to me. I can picture it and I can feel it right now as I write this…I long for it and I miss it so incredibly much. It’s one thing I often find myself jealous of. I see parents pick up their little ones and give them a quick hug like or a big huge snuggle. They don’t think twice about it usually, why would they? But I do.

So after a long hug and squeezing session in the doctor’s office our routine is to go get milkshakes on the way home as a reward. In fact, it’s become our routine for just about any doctor visit now. And once we get home its bath time. The excitement on her face when she’s in the tub and realizing she can actually splash and play is infectious. It’s impossible not to grin ear-to-ear.

These breaks from her casts are filled with more baths than you can imagine, almost daily trips to the pool, ooey gooey messy crafts projects, more hugs and snuggles. I’m beyond grateful for these breaks where we have a few days to live life like normal.

milkshake  crafts  pool

 

Trading Worry for Peace – Present Day: April 3, 2014

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The Dalai Lama once said, “If a problem is fixable, if a situation is such that you can do something about it, then there is no need to worry. If it’s not fixable, then there is no help in worrying. There is no benefit in worrying whatsoever.” Such a simple and yet profound explanation of worry. I know this. I believe this. I’ve tried to live much of my life knowing worrying is useless and won’t get me anywhere. Lately, I’ve found myself reading this quote, and a few others about worry, over and over and yet I’m struggling, really struggling to push worry aside.

After first getting Nora’s diagnoses over a year ago, I did a great job of pushing worry aside and focusing on what was right in front of me and what I could control. But in the last month or so, since her case has changed, I can’t seem to push worry aside. Not even a little bit. My days and nights are constantly filled with worry, fear, wonder and doubts and so many unanswered questions…questions that simply do not have answers. Constantly.

We meet with Nora’s surgeon yesterday again to talk more in-depth about our options. I was truly hoping that we would leave that appointment and things would suddenly become clearer, that there would be an obvious path to take. But there wasn’t. Her doctor said it best, “When you have several surgery options it’s because none of them are really that great. There is no perfect solution.” It’s a freakin’ complex matrix. It’s not a simple pro’s and con’s to each surgery, there are too many factors that play into it. But the worst part of it all, is there are so many unknowns, questions that don’t have answers. Eventually, hopefully a year or two from now, we will have to pick something. How do you pick a surgery when you don’t have all the answers? When they all have risks I simply don’t want to think about.

I’ve spent hours and hours digging and finding all sorts of research and studies. I keep searching as if I think I’m going to find the perfect solution out there. In my subconscious I think I’m going to somehow discover something none of the experts have ever thought of.  As if I’m now some orthopedic spine genius sent down from God himself. Yes, it’s crazy. I know that. But what it’s really called is denial. DENIAL. I know I’m in denial… still. I can rationally understand that but I’m not ready to move on to full acceptance.

None of us know what the future holds for ourselves or our children but we all imagine it and have a basic story line in our heads. Worry has driven me to think of what my daughter’s real future will be like. What will her life be like as a teen and into adulthood living with this? A big percentage of spinal surgeries using rods, screws and fusions have complications 15 -20 years down the road. At least that’s what studies show from those who had those surgeries 20-30 years ago. Some of the complications are, all things considered, minor but many are not. I’m inundated with stories I read daily of adults who are suffering now. We are talking on living on disability, continually use of pain medications, a limited lifestyle, etc. The surgery options we have now do not have any long term studies because they just haven’t been doing them long enough. But that’s what I worry about so much these days. The unknowns. Things out of my control anyway.  I worry for her future in a way I never thought I’d worry. I worry we will choose the wrong surgery. I worry later in life she will live in pain. I worry about her psyche, her self esteem, not being able to do all that she wants to do. I can’t push those worries aside no matter how hard I try these days.

And so I will close with another quote that spurred this blog entry

“Never worry alone. When anxiety grabs the mind, it is self-perpetuating. Worrisome thoughts reproduce faster than rabbits, so one of the most powerful ways to stop the spiral of worry is simply to disclose your worry to a friend… The simple act of reassurance from another human being becomes a tool of the Spirit to cast out fear — because peace and fear are both contagious.”