Our family has benefited immensely from the Complex Care program and the services it provides.
When one has a child with special needs, family life automatically becomes more complex and sometimes very calculated in many ways. Not only are there often additional physical and emotional needs to consider, there is the whole medical side of things that can become very overwhelming.
Living almost 2 hours north of the city, we needed a high level of care and expertise closer to home. It was a stressful time when our son was going to be leaving the care of the Toronto doctors and moving to the Orillia hospital. Our fears were calmed almost immediately as we became part of the Orillia Complex Care family.
When there were so many medical unknowns and concerns, the Complex Care team became an invaluable resource for us. Having several of the people involved with our son’s care together in one room to help formulate a care plan and lay out all the resources available to us made it easier to manage his needs. With so much happening on a day to day basis, as a parent, the thought of having to go to several appointments far from home just added a whole other element to dealing with his issues. With email or phone access to members of the Complex Care team, we were able to have our questions answered quickly and often without having to leave our home.
Throughout our journey we have been learning the art of stress management. The complex care team have made every effort to help us in any way possible. They are a fantastic team and very much appreciated. Our son has come a long way on his journey to health and “normalcy” but there is still a long way to go. We trust we will be working with the team close to home throughout this time.
We are truly blessed to have the medical expertise that the Complex Care team provides. We always feel very well informed and have every confidence that our son’s medical needs are the team’s number one priority. We feel like the team is an extension of our family and are never made to feel like we are “just another patient”.
“Our daughter is 20 months old and has been diagnosed with Aicardi Syndrome. She faces a lot of health and developmental challenges including intractable epilepsy, developmental delays, vision problems and ongoing respiratory issues. We live in a rural area and because of this, we end up travelling a lot for different appointments. For example, our monthly trip to get the RSV vaccination means a day off work and 1 1/2 hour drive each way, for a 20-30 minute clinic appointment. We have a similar experience for seating clinic appointments if adjustments need to be made to her wheelchair. We are also more limited on when we can make PT/OT appointments because the therapists are only out to our area a few days a month.
We miss out on some services for disabled children that are provided just because they are only offered in the city and it’s too far of a drive. I am concerned about what will happen if her health deteriorates and her care becomes more complicated. She will require more services and accessing those will likely be difficult where we live.”