The NICU Nurse Who Showed Us How To Fight

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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Lately: On Specialists and Therapies

The other day, a neuromotor researcher asked me to send her a list of all the therapies we are doing as well as the specialists we regularly see.  With all the traveling we did and changes Solly went through in the last year, this seemingly simple request was not so simple! After our year of change, in my mind, we really pared down the number of therapies Solly did each week, but our schedule is still pretty full. The biggest difference is that we have more therapies that are fun for Sol and fewer that require him to sit still in a chair.

After racking my brain, here is the list that I sent her:

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What A Ham

After Solly was born, we had a month-long stay at the Georgetown University Hospital’s NICU. There, the neonatologist had told us that in order to be discharged, we had to get Sol’s seizures under control and come up with solutions for his oxygen levels and feeding. Seizures were the easiest thing to get under control, followed by removal of all oxygen support. While we were confident that Sol would come home without any feeding support, some of his doctors were less-than-optimistic. I remember expressing some feeding concerns to one of his rounding doctors, a Fellow who was spending some time at Georgetown, and her exact words to me were: “I don’t think he’ll ever eat by mouth. He may be able to have some pleasure feedings by mouth, but he’ll probably go home with a g-tube.”

Less-than-optimistic, right? It was definitely not the kind of thing we wanted to hear.

Luckily, Solly is stubborn (just like his Mama and Dada!) and proved that doctor wrong, leaving the NICU a little over a week later without any feeding support.

However, since leaving the NICU, feeding has continued to be a struggle for us. Sol’s strokes affected his ability to coordinate muscles, including facial muscles, as well as dampened some of his sensory abilities. At three years old, he is still taking the majority of his calories in by bottle and eating some finger foods, but primarily favoring purées that he can eat by spoon or feed to himself with his fingers. We’ve been in weekly feeding therapy since he was one year old to address his muscular challenges as well as a few behavior issues. Progress has been slow, but entirely worth it, especially after we switched to a new, very experienced feeding therapist, Linda, at High Hopes in Franklin, TN.

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Word of the Day: Apraxia

Definition: Apraxia is a motor disorder caused by damage to the brain (specifically the posterior parietal cortex), in which the individual has difficulty with the motor planning to perform tasks or movements when asked. (Source)

I remember the first time I heard the word “Apraxia” mentioned as it applies to Solly. It was back in D.C. and Marie, our vision therapist, was holding a teeny tiny baby Solly. She placed him on her left side, trying to get him to move his eyes to look at her. It was difficult. When Solly was born, his eyes were stuck staring to the left side, and for the longest time, I worried this would always be the case. As she continued speaking to him, he started to dart his eyes over to the right side to check her out. It was progress. “It’s almost as if he has visual apraxia,” she said, meaning that he could see, he knew he needed to look to the right to see her, but his ocular muscles weren’t understanding what his brain was telling them to do.

Over the weeks that followed this particular appointment, we continued to work with Solly and his visual control began to improve. Today, if you were to meet Solly, you might see his eyes dance around as he focuses on you, but for the most part, he has good control over his eye movement. We know he sees (his Nana might tell you that he doesn’t miss anything!) and other than some possible peripheral visual field loss, the only thing he struggles with visually is this control over his eye muscles. In my book, since his control has gotten much, much better since those initial days, it’s not that big of a deal. He compensates quite well and it’s just something we’ll continue to watch and find ways to support as he grows up.

While the idea of difficulty with motor planning was often mentioned, especially with our new physical therapist, the term “apraxia” didn’t come up again until we were in Florida for our intensive therapy. While there, the physical therapist working with us watched Solly and suggested we have an evaluation with one of the speech therapists at Lampert’s who has years and years of experience with kids just like Sol.

She was amazing. If I could have packed her up and brought her back to Nashville with us, I would have.

She took tons of notes about Sol’s medical history, watched him eat, and asked him to move his mouth and tongue in certain ways. She explained that he has some apraxia, making it difficult for him to manipulate food in his mouth and move his mouth and hard and soft palettes to make different noises – or, to talk. She gave us a handful of exercises and stretches for Sol’s cheeks, lips, and tongue that will help bring awareness to each part of his mouth to help improve feeding and speaking. After just a couple of days, Sol was eating new textures, comfortably and easily. He’s also gained some weight since we met with her!

Difficulty with motor control affects almost everything Solly does – walk, talk, and grab for and look at objects. But that doesn’t mean that he can’t do them. We just need to teach him how and be patient with him as he figures out how to do what his brain is telling his muscles.

Years ago, I would have freaked out when I heard apraxia as a possible diagnosis. (Yes, it’s still a “possible” diagnosis as it’s not officially on his medical records, yet.) I probably would have jumped in bed, pulled the covers over my head, and cried non-stop. Now, I look at it as a blessing. It helps me understand how he’s processing – and not processing – what we’re teaching him, it tells me what types of people we need on his medical team, and it also reassures me that progress IS possible.

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Peekaboo!