Our daughter Abby has clinical cerebral palsy meaning everything we see her in body ‘looks like’ cerebral palsy. We were sent for MRI diagnostic imaging in hopes that it would help diagnose her cerebral palsy and give us clarity as to how her brain damage occurred. After being placed on a 2 year wait list for MRI requiring sedation at BC Children’s hospital we were sent by our family physician to Edmonton, AB Stollery Children’s hospital who were able to schedule her within a 3 week time period. We had the MRI done last week and the results came back the next day as normal. There was nothing remarkable in the report.
The next step for Abby will most likely be genetic testing and metabolic screening. It will be more difficult for her to receive a CP diagnosis without the MRI showing any damage in her brain, however a few medical journal reports that I have read place a diagnosis of CP with a normal MRI as high as 10%. I will speak to Abby’s neurologist at the end of August via tele – health to hear what he thinks and what he would like to see happen next. I’ll be honest I was a little bit crushed by the results. Abby doesn’t fit with any other condition really and I had wanted to be able to move forward with some answers and be able to state clearly what is going on with her especially as her equipment costs are sky rocketing and we need to start applying for funding from charitable organizations to help cover the costs. It also seems a bit alarming to me how slowly we treat children with these types of neuro-muscular symptoms in Canada. On behalf of all parents that are waiting in BC, I’m really disappointed. It shouldn’t be this way.
Matthew and I have to continue to move forward with Abby in love and faith. We still believe that God knows, he will move and he is doing something even right now. SO, if you are a praying person and you want to support us in that way, here is what we are needing prayer for:
- Give thanks for the care team members that are already in Abby’s corner with us. We are so thankful for both our family practitioner and the local staff at the Child Development Centre but we need more specialized practitioners to start to get involved in Abby’s care.
- Pray that an effective care team of doctors is established for Abby. Pray that these doctors do their job with hearts of compassion and eyes of wisdom.
- Give thanks that right now there is no visible damage in Abby’s brain and pray that Abby’s neuro-muscular system would also improve to match that.
- Pray that we would continue to have eyes, and ears of faith for the miraculous. Not just a big miracle but the small day to day miracles.
- Pray that Abby would start eating better. Abby remains on close watch for intervention regarding her nutrition. She finds eating challenging and frustrating. Meal and snack times are time consuming and if her weight gain does not continue to improve they will have to look at putting her on a feeding tube. As her parents we feel that she is not disabled enough that she shouldn’t be able to eat herself and I don’t want to take steps backwards on anything that she CAN do.
- Pray for our other kids. Our kids love Abby like crazy and all of this can start to be hard on them too. They feel the weight of it all. Pray protection over their own little hearts.
- Pray for the right connections. Matthew felt early on with Abby that God would start to show where He is in her situation by sending help. We believe that that will continue.
- Pray for wisdom for us and patience. I have had to advocate to push forward every step of Abby’s follow up. I am growing really frustrated with the process and the lack of attention from some parts of the health care system. It’s hard for me to know when to wait and when to keep pushing. There are several Shriners hospitals in Oregon and California that specialize in neuro muscular disorders that would help us at no cost (even travel and accommodations.) We are prayerfully considering this. I know many of you may have misgivings about Masonic influence in the Shriners organization. I am well aware of the connection but can you please pray over it.
- Pray over our finances. God really has taken care of us this year. It has been Matthew’s first year running his electrical contracting company full time and our needs have been met. The equipment that Abby could require, the therapies etc. … I mean …there are no end to the costs if we did it all. We are thankful that a portion of her expenses are covered but pray that we will use money in the right places and towards the right things to support her growth and development.