Yesterday Ryleigh spent the afternoon with two of her doctors. Her rheumatologist and her gastroenterologist. I have to say that these appointments were the most hopeful. There are no answers but their was more information which can always lead to a solution.
First, Ryleigh’s gastroenterologist , Dr. Barker discussed with us the results from her 3 scopes she had on Wednesday. He brought pictures from the scopes which was fascinating to see. There is definite disease in most parts of the digestive system that they could see. I asked Dr. Barker if this rules out the possibility of a complex pain syndrome – unfortunately he thinks she is experiencing complex pain as well. Her brain has become wired for pain and this just adds another layer to her health care. She will be continuing with the Thalidomide until the doctors get special permission to try another drug and/or she goes to Sick Kids and they recommend something else.
He is officially referring her to Sick Kids in Toronto but is not sure yet how long the wait will be. He will let us know when he finds out. Until then, Ryleigh will continue with doing what she is doing.
Then Ryleigh spent 1.5 hours with the rheumatologist. This doctor was familiar with Ryleigh as she had met her in 2013 when Ryleigh had the two complications:brain lesion and deep vein thrombosis. It was reassuring to Ryleigh because this doctor was understanding and supportive. She empowered Ryleigh by affirming that she was a mystery to all of the doctors and that she is coping fantastically. I so appreciated her comments as it gave a renewed energy and hope that we can cope and make it through. There is some discussion now that this might be a syndrome or disease that shows itself within symptoms of Crohn’s disease. Because she has had some odd complications – these might be from another condition. It was interesting to hear the doctor discuss her symptoms and disease in another context.
This doctor also gave us some ideas for supporting Ryleigh in being more independent. We will be looking into a mobile device of some sort to give her a chance to get out and do teenage activities. Also, I was given some ideas to get her some ongoing support in the home and at school to manage her fatigue and pain. All very hopeful!
This has made Ryleigh feel like she can get out of her room and experience life a bit more. Usually after her appointments she wants to go back to her room to rest. Not this time….because we had a wheelchair she wanted to get onto the skytrain and head to Metrotown! It was so much fun – we had no plans but just walked around, looked at things, and made a few simple purchases (she spent most of her time in Claire’s looking at accessories and of course chapters looking at books).
As we were leaving I complimented her on the positive energy and willingness to go out of her comfort zone. She looked at me with a big grin on her face and said, “Mom books give me energy.” What a delightful comment coming from a 15 year old!
I reflect on our 3 hours out in the real world. Away from hospitals, doctors, and worries. I sat on the bus on the way home grateful for this time. The week started out so miserably. I was feeling hopeless and helpless. Not knowing what to do next for my daughter. My limits have been reached, I thought. I could not take anymore – emotionally, physically, and financially. Then, I took a breath. Asked for help and got through the week. Ending on the most joyful time I have had with Ryleigh in many months. Her bright smile, energized manner, and joyful energy just doing what most people do every day – was uplifting and gives me the courage and energy to continue finding moments like this for her.
We come home today. I am looking forward to the start of school for Ryleigh and myself. We come home to a community that has wrapped us in kindness, caring, and support.