What If Cayla Tested Positive?

My seventh draft. Still unable to put thoughts into words. Perhaps it was difficult to adequately describe how I felt in writing. I would try.

Since April, C was bugged by viruses. He was down for 9 days with a persistent high fever (39.8 degrees at its highest). On the 5th day we made a trip to A&E for routine blood and urine tests which he cleared. While on the road to recovery, came occasional episodes of desaturation and frequent choke-coughs. We were expecting another bout of illness but it did not come. By early May, desaturation returned with a vengeance, accompanied by a fever and cough. Last I checked fever spiked to 39.5 degrees. I hope we could get over this without checking in at the hospital.

That aside, what worried me was C missing an entire month of physiotherapy (PT). He seemed so fragile especially with joints that sometimes crackle when moved. His limbs and hips so skinny that they could possibly give way when force applied. Everytime it crackled, my heart skipped a beat and I literally sweat my head out in the next 15 minutes checking for signs of pains and jutting bones. I was so afraid of breaking him I have since refrained from putting pressure under his armpits, lifting him by holding the sides of his chest instead and quickly supporting his bum, worried that his body may not hold. This, a reminder to discuss with his panel of doctors on x-rays to be done during his next medical review.

Yet amidst these unsettling events, something weighs on our minds.

Following my earlier post, Cayla underwent a speech and hearing test during the same period. She was also assessed by a doctor at the Department of Child Development (DCD), KKH.
Doctor found her to have coordination issues and had to commence regular occupational therapy (OT). She explained that since C has a genetic condition, it was best that Cayla be tested for SMA as SMA of other types may sometimes manifest itself in many ways, in Cayla's case - poor coordination and muscle weakness. We were also told to watch out for signs of regression as an indication/red flag. Like I had mentioned prior, we were aware that Cayla had issues and needed help, though this did not come as a surprise, it wasn't easy to take in. DNA test has been scheduled for end of this month. Felt like deja vu and I am not liking the wait for the results (usually takes a month), that I'm pretty sure.

Today Cayla went for her first OT session. Feedback was poor - weak limbs, poor coordination, zero balance, weak core muscles. She requires more than once-a-month OT. Therapist suggested intensive therapy i.e. once a week for a month and to see her again 2 months later. To top it up, Cayla also needed PT which will be scheduled soon.

I did not know how the rest would take the news but for me it was simple - Cayla has been neglected for the longest time (due to C's condition) and she deserves the same (if not more) attention and early intervention to help her along. One thing at a time, one step at a time. We will get there somehow.