The NICU Nurse Who Showed Us How To Fight

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May 6 – 12, 2018 was National Nurses Week. As I read through posts on Facebook and articles online, I recalled our time in the NICU where the nurses played such a major part in Solly’s recovery. There was one NICU nurse in particular who I credit with getting Solly home quickly and setting him up for success – namely, teaching us how to fight for him. This is our story with Judy. 

“He’s going to be there for weeks or even months, not days,” Mike told me as I shook my head in disbelief, tears streaming down my face. It was two days after Solly was born via emergency c-section and he’d been admitted to the NICU due to seizures. We’d just received the result from his MRI: massive, multiple bi-lateral strokes that occurred some time around birth. The prognosis from the fellow on duty that evening was horrible. She didn’t sugarcoat it at all: our son would never walk or talk, he’d likely be unable to hear or see, and he’d probably never live an independent life.

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A Nanny for Two Adorable Children

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Why don’t you guys take a break tonight from poopy butts and sick kids and go have some dinner and drinks. I can stay till 9 so you’ll have plenty of time for dessert too!

Mike and I received the text above from one of our nannies while I was en route to Solly’s first-ever dentist appointment, after a sleepless night thanks to a teething and diaper-rashed Bea. Texts and conversations like this are fairly normal from her and our other nanny: “Camie, go for a run! I’ve got the kids. Go ride your horse. Go take a nap! TAKE A BREAK!”

To them, nannying is a job, yes, but in the 15 months and 8 months that we’ve employed Nanny Jen and Catherine, respectively, each woman has become an extension of our family. They love our babies, go above and beyond to learn handling methods, feeding techniques, equipment, doctors’ and therapists’ names, and help me with research and brainstorming ideas for just about everything. They get what both of our babies need and also act as a continuation of me around the house, doing laundry, wiping the counters, letting the dog out, basically doing whatever needs to be done to keep our household running smoothly.

I feel so incredibly comfortable leaving my babies in their care. I don’t know what I’d do without them.

When we moved to Nashville, we largely chose to move so we’d be closer to family for some much-needed support. What we didn’t realize was how much support we needed.

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Our Stem Cell Therapy Experience

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I’ve struggled with this post. I’ve debated on how much medical detail I should go into on a topic that I truly don’t know that much about. I also worried about sharing too much because, as I’ve learned by participating in support groups on Facebook, stem cell therapy is still very much in a research phase and, as such, it is a polarizing topic. However, because we did our own research and have had wonderful results with our first round of stem cell therapy, it’s important to share our experience. Here it is.

I never thought stem cell therapy would be an option for Sol. When I was pregnant with him, we didn’t make the necessary arrangements ahead of time to bank his cord blood. Honestly, we had a perfectly healthy pregnancy, so there didn’t seem to be a need for it.

After Solly was born and we started seeking out less traditional treatments, I kept hearing about stem cells, not entirely knowing how it worked. When I found that an ongoing clinical trial at Duke University was only for children with cerebral palsy using stem cells from their own cord blood (here are some of the results from that trial), I put the entire idea on the back burner. Around the time that I was pregnant with Bea, I heard whispers that Duke’s next stem cell study for cerebral palsy would be testing sibling cord blood, so we arranged to bank Bea’s cord blood so we would be prepared when this treatment was available to us.

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A Little Stroll

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When we got home from NAPA Center three weeks ago, I tried to make more of an effort to have Sol spend some time in his gait trainer each day.

When I say “make more of an effort”, that generally means that I’m successful maybe every few days because, let’s face it, if I were to do every activity that every single one of Solly’s therapists want me to do at home with him, we’d have enough activities to fill up 54 hours in one day. But, we’ll save the topic of “Mom is medical coordinator, researcher, therapist, advocate, all-while-trying-to-be-Mom” for another post.

While chatting with Jennifer, Solly’s PT at Full Circle Therapy, during last week’s hippotherapy appointment, I told her that we were struggling to find something at home to motivate him to take steps in his gait trainer. She suggested that we allow Solly to have alone time while in his gait trainer so he can work on figuring it out on his own. So, we took her advice and starting last week, for about 30 minutes before dinner, Solly would spend some time simply hanging out in one of his gait trainers. For a couple of nights, he’d shuffle forward a little bit and get stuck, so I’d adjust him and let him hang out so more.

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NAPA is Magical

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On Day 1 of our 3 week intensive at the NAPA Center, which stands for Neurological and Physical Abilitation and is located in Los Angeles (and Sydney and soon-to-be Boston) and NOT Napa Valley, I proudly posted a photo on Instagram of Solly kicking butt and standing (with assistance) during the first hour of his intensive therapy. A Mama of another CP kiddo quickly posted: “NAPA is magical! I hope you have a great experience.”

I smiled as I read her comment, thinking to myself – yeah, yeah, I’m sure it’s great, but we’ve done intensive therapy before and I’m pretty sure I know how everything will go.

Nope. I was wrong. That Mama was right. NAPA is the most magical and amazing place on Earth. Solly made the most gains I’ve ever seen him make in a short time period.

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