Category: Uncategorized

  • Crossing Fingers

    Today Ryleigh had her Remicade treatment. It was a tiring day for all of us as we got little sleep the night before because of our second adventure at the emergency room. Gratefully, Ryleigh’s own doctor was on today and I must say I was relieved to see him. He…

  • Heading Home for 7 Hours!

    GI fellow came by. Bloodwork looks fine — she is not concerned about bleeding because Ry has remicade. They are thinking of increasing prednisone! Oh my. I am so confused. Sleep, coffee, then I will be better off to discuss with doctors.

  • Another Visit to ER

    Here we are again! We had a seemingly good day. But starting around 9:30 at night Ryleigh started having pain in her tummy again. She was upset because it felt just like the Crohn’s pain she has had before. She was okay dealing with it because she was going to…

  • Family Day Weekend

    Chloe, Ryleigh, and I were able to spend the family day weekend together – I missed Dan and Jakob — but it was nice to be the girls. We spent time together trying to renegotiate things as we are in a small space and we are all a bit tuckered…

  • “Perseverance is not a long race. It is many short races one after another.” – W. Elliot

    Should be thankful that we had 6 hospital/medical free days. Was difficult to make the decision last night to go to emergency. Ryleigh agreed that she should get checked. We took a cab to BCCH Emergency. This is one part of the hospital that I am not familiar with but…

  • Spoke to soon…

    In my last blog I wondered if I was feeling a bit of withdrawal as my adrenaline and cortisol levels have been reduced as we have been 6 days out of hospital. Nope just plain old exhaustion. Right now I am in an emergency room with Ryleigh. She fell asleep…

  • Slow and Steady…

    Another day closer to us coming home. We had a very laid back day – I seem to have a bit of a bug although I am wondering if it is adrenaline withdrawal?!!! The last weeks have been so intense that just having some down time is a different feeling.…

  • We all need something to lean on….

    Today was a wet and rainy day but it wasn’t cold and snowy. Ryleigh was up very late last night — we got watching some television and she got really into reading Catching Fire (part 2 of the Hunger Games series). The steroid, prednisone, keeps her up too even when…

  • Don’t mess with a girl on prednisone and her pancakes!

    It is so odd to go from having Ryleigh only eating 500 calories a day to 500 calories as a snack! The change in her eating habits because of prednisone is unreal. One morning she ate 3 pancakes, 3 eggs, and 6 sausages! We travel to IHOP every morning on…

  • Transition

    I found out that Easter Seals House has WIFI – it just does not work in our room. I can sip my instant Starbucks in the common area on our floor and blog. We are in a transition time now. Ryleigh has been out of the hospital for 24 hours…