Ryleigh had a nice day today. She got up early to travel by bus to the beauty salon that we found years ago. We actually met up with our stylist on the bus. Ryleigh decided to go with purple again and it just brightens her up inside and out!
We then ventured back to Ronald Macdonald House and met up with our dear friends – the Cullum’s. Nash, Jordyn, and Ryleigh explored a bit and played some air hockey. Ryleigh was so happy to hang out with them. It was great for me to sit and chat with Debbie and Warren. Kindness, laughter, and friendship – a rewarding way to spend a day after a tough couple of days.
Ryleigh and I have had some difficult discussions over the last couple of days. I feel for her as she is frustrated, sad, and angry. She had 3 scopes yesterday. The scopes showed evidence of disease – which was no surprise to Ryleigh. She still wonders if the pain is amplified by having developed complex pain syndrome but nevertheless the disease is still in a full blown flare. Reflecting on the issues that continue to face us – I realize that Ryleigh has developed some excellent pain management strategies. She has to as she is in some sort of pain throughout her days and nights. Nights are hard – I am understanding that a bit more as we are sharing a room. One of the way she copes by watching youtube videos (she follows a bunch of different ones). There is nothing better than to hear her random giggles as she watches them.
We chatted again with the nurse practitioner and her doctor yesterday. It has been decided that a new set of minds would be beneficial to help look at her medical history and issues now. So, she will be referred to Sick Kids Hospital in Toronto. The hope is that a new team will perhaps see things differently. Ryleigh and I think this is a good way to go. She has had numerous symptoms and complications that are not typical for Crohn’s disease. Ryleigh (and I wonder with her) wonders if perhaps the crohn’s disease is actually a symptom of something else. Dr. Barker also agreed that having a new set of doctors looking at the her files with a fresh perspective might help see something others had missed. Because she has been under the care of many teams and departments and she has had some many crises…something else might be found.
I also think that her team is so focused and wanting to help her that they may have possibly gotten too focused. Getting ideas from someone else could be the answer.
We do not have any definitive times about when this will occur. So, she powers on.
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