It’s taken me longer than intended to sit down and write this, not least because I’m losing the game of germ dodgeball that my children like to bring home from school, and it’s been particularly relentless the last few weeks.
As I reflect on the trip, the tightly wound ball of worry was evident at every step, from snapping at my husband on the way to the airport to the extra stress the turbulence had on my nervous system to the inability to sleep well despite the deprivation. Yet it started to uncurl as the week went on, not just because we largely had good, no great news, but because the people who look after our son are some of the best people you will meet on this planet. I hope you don’t get to know so many of the specialists we see, but when you’re in a room with people who have dedicated their entire lives to serving sick children, it’s a grounding experience.
An area of concern for anyone with Myhre syndrome is the onset of stiffening and thickening throughout the body, including the internal organs. The muscle you want to be supple, fit, and well-supplied is the heart. We’ve seen the devastation in our community and the catastrophic impact Myhre can have on this organ. Our cardiology appointment was the last of our visit and involved them performing their own echocardiogram. It involves a Doppler placed on the skin with gel to capture images on the screen as you see in the movies for pregnancy scans. The room lights were dimmed, and before we started, the sonographer held up a trio of DVDs. Finding Nemo was the winner; the sonographer purposefully started it a little way in; he couldn’t understand why a film would open with sadness (spoiler alert: Nemo’s mum is eaten by a barracuda within the first five minutes). The procedure took around 45 minutes, longer than usual. Our heads were close together as I held both of his hands, and the movie had a hypnotic effect; both of us were tired from a full three days of appointments and fun. We waited another 30 minutes to hear that the results were stable, with no signs of stiffening or thickening.
We breathe out. For now.
The whole family had come on this trip as it was spring break, and our itinerary had a strange juxtaposition. We’d be in the hospital having serious conversations, then blink and jump in a cab across the city to have fun at the museum, aquarium, or Legoland. Each day, a different attraction. Each day, at least two different body systems to be caught up on.
The most poignant appointment was rheumatology – the discipline that treats inflammation in the bones, muscles, joints, and internal organs. It was the first time this specialist had seen us, but we had suspected something was happening, particularly in his knees. They are big and not in proportion to his legs, which are small and thin. Schools of thought are that the tight muscles have pulled apart the structure or there is an anatomical malformation or inflammation. Perhaps slight indications of all three. He doesn’t complain too much of leg pain, but it comes and goes. Confirmation came that his ankles and knees were inflamed.
We asked, “What did that mean?”
He said, “That he’s likely in pain.”
At that point, the physical pain also becomes mine. To know that his body hurts and has probably hurt all his life is hard to fathom. Long-term pain medication is in his future, but for now, we’ll monitor and see how we can help him via his diet and exercises that don’t exacerbate it.
Similar news was reported at our physical therapy appointment. Upper body and neck rotation are restricted, which we’ll work to improve with regular physical therapy sessions. We let the physical therapy team know that he didn’t seem keen when we were trying to encourage pedal pushing on his bike and that we’re still at the balance bike stage.
She said, “That position for his legs will be hurting.”
My stomach lurches again and lands in my shoes.
She continued, “If it’s important for him to ride a bike, then we must build up to it.”
I try not to make comparisons on our journey to those of others. Still, I know families deal with way more than us, wishing bike riding was even a consideration. It’s healthy to have an awareness of the gratitude I have for our position, yet there is agony in the truth that our little boy feels pain and will live with chronic pain for the rest of his life.
But we move.
We move forward.
We move those stiff and sore muscles.
We move with gratitude and with appreciation for what we have today.
We don’t need to return to the clinic for at least two years; our local care teams are well-equipped to monitor and treat his symptoms. Not only did Boston clarify our son’s health, but as we tried to open the cab doors against the gales while rushing to get out of the snow showers, it wasn't long before we decided that California was the place to stay. Heading east can be tempting for cheaper housing and cost of living, but we’ve been spoilt. We’re paying for the sunshine, and it appears happy to do so. And that decision, in and of itself, is also another great milestone.
Until next time x