SMA: Neuromuscular clinic (September 3)

A few days after Khloë was discharged from the hospital, we went to our second Neuromuscular Clinic appointment. We met Dr L, an orthopedic surgeon, who was very friendly and great with Khloë. He liked that her feet aren’t terribly formed yet and he wrote up a prescription for Ankle-Foot Orthotics (AFOs). There’s an ADP form that goes with the prescription as well, which means we will only pay 25% of the cost.

In case I haven’t explained what ADP is, it’s short for Assistive Devices Program, and it’s for residents of Ontario. Once approved, ADP pays 75% of the cost of the device. In this case, the AFOs. We are awaiting ADP approval for the suction machine and feeding pump. Khloë’s equipment is very expensive! Another program we are hoping to be approved for is ACSD (Assistance for Children with Severe Disabilities). If we get approved for that, then ADP will actually cover 100% of the cost of the devices I listed! ACSD is based on our income.

We also saw the physiotherapist (not much to remark) and Kellie, the dietician. Kellie is looking into Pediatric Vivonex, an elemental formula, for when Khloë turns 1 in December.

Dawn, our nurse coordinator, gave us the CoughAssist machine to take home. She suggested we have Khloë play with the tubing and mask to get used to it first. Not sure what happened to the pulse oximeter we were supposed to be given… Both of these pieces of equipment are loaned to us from the Ventilator Equipment Pool at no cost.

Next we saw Dr MacL, a different respirologist. He doesn’t think Khloë needs BiPap just yet, but he wants to do an overnight pulse oximetry at home to get an idea of her sleeping O2 sats. We professed interest in the BiPap because we know Khloë will most likely need the extra breathing support when she gets sick.

And lastly, Khloë was assessed in her car seat with the pulse oximeter attached to her toe. We were trying to see if her blood oxygen level was different while upright. The OT still doesn’t want to help us with getting the car bed from FSMA Canada.

Later that afternoon Jordan and I met with a genetic counsellor. We found out that we are indeed carriers of the SMA gene. No surprize there! In order for Khloë to have Spinal Muscular Atrophy, both of us had to be carriers. The counsellor drew our family tree, explained a few things about autosomal recessive genes that we already knew, and said that she would be mailing a letter to us that we could give to family members. The letter would explain our family history of SMA and would encourage family members to get tested to see if they are carriers of the gene that has changed our lives!

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