CHD Awareness Week – Avery at Two

This post is the last in a series of three. To read the previous click here: (diagnosis and surgery).


Coming home:

Avery was brought home on January 25th, exactly one month after her birth. I would have to pump her milk and fortify it with formula but save that there were no special directives required for her care. She grew slowly but surely with regular appointments at the family doctor and clinic (for vaccinations and weight checks), but we would have no other interventions until she was six months old.


Our second home:

As part of the post-operative care of Avery, she visited the cardiac clinic for a follow-up appointment at the age of six months. She had a murmur still (since the hole created by the balloon septostomy had not closed) as well as mild pulmonary stenosis. Save annual checkups (where they would check to ensure that her arteries were growing with her), they told me she was doing very well and that no additional therapies/medications would be necessary.

In addition to her typical care, the Alberta Children’s Hospital’s Perinatal Follow-Up Clinic manages care for children who are premature and/or those who experience invasive therapies. In this clinic, the child is followed by an assigned pediatrician and several nurses. This group will regularly check the child until 18 months of age and then do an additional review at the age of 4 1/2. Should they perceive any development issues with a child, they can refer to other clinics throughout the hospital.

While lucking out in her cardiac post-operative diagnosis, we spent a great deal of time in the perinatal clinic dealing with various minor issues. She worked with an occupational therapist to aid in eating (pinching and grabbing). She had hearing tests due to her relative lack of responsiveness (even to me) at the age of six and twelve months (she passed). As we plugged on, it was becoming apparent that Avery was not hitting her marks when it came to gross motor movement.  She did not sit until the age of sixteen months and did not walk until twenty-two months so she was assigned to a physiotherapist. In addition, she was assigned to a speech therapist since she was testing at the age of a nine month old for expression and reception. In the end, this confluence of factors would end up with a diagnosis.

On her eighteen month follow-up, Avery was given a diagnosis of cerebral palsy (mild and only on her right side). Believing  it to be due to an oxygen depletion which caused her brain injury, the pediatrician concluded that it was probably due to the time spent on the bypass machine during her open heart surgery. We have yet to make it to the neurology clinic (we have been on the wait list for eight months at this point since Avery’s condition is mild) so the causes are still (and may forever be) undetermined. Wait lists seem to be the norm for the more specialized clinics of neurology and opthamology (Avery’s right eye tends to wander which requires a visit).


Presently:

Avery is now two. Her heart condition steadily improves even if she is still a little smaller than they would like. To keep up with her therapies,  she will be going to special needs preschool in the fall (where she will have to go five afternoons a week!). She still doesn’t sleep through the night (didn’t figure out any self-soothing strategies as a baby thanks to her time in the hospital and an overindulgent mama!) but save that, she is a real trooper with a smile always on her face!

Note: Alberta Learning provides funding for early intervention from ages three to six (if you need more information, click here). The funding is particularly driven by speech delays so if you think you might have a child that would benefit, get them assessed by a speech language pathologist…better now than when they get into elementary school when there is no longer the resources available!

Allison mixes up her day with mothering, working and crafting. She has three wild jackals (also known as children): Tristan who is seven, Charlotte who is five and Avery who just turned two!  She blogs at Stampin’ When I Can.

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One thought on “CHD Awareness Week – Avery at Two

  1. Pingback: Month in review – February | Kids in Cowtown

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