It is almost the end of Day +15. Ryleigh’s counts have not gone up. I eagerly await the 7AM nurse change so that I can get her blood counts for the day. At 4:00 each morning she has her blood drawn so the results can come in early. But, no changes for over 15 days….such a stress to wonder when it will start. We are all eager to get the recovery process going. Ryleigh is managing well. She is resting when she needs to, starting to do some physiotherapy to help get her body moving as she is very, very deconditioned, working on eating healthy, and trying to spend some time with her sister. Ryleigh’s fun way of seeing the world is coming back as her Crohn’s has settled down thanks to no immune system. The big question will be to see if the Crohn’s will stay away when her body starts to generate those white blood cells and neutrophils. But for now I am grateful for her sense of humour, witty comebacks, and her making sure we are technically correct on various facts during our discussions.
The last few days have had a few moments that have lifted all our spirits and helped us take some time to enjoy and laugh.
Moment 1: Games and Laughter
I find that Ryleigh is quick to say no and refuse to do things. It is going to take time for her to believe that her body can handle activities and take risks to do a variety of different activities. Chloe comes to visit Ryleigh and works hard to not get upset if Ryleigh does not want to do anything. However, Chloe knows her sister well and brings out crafts to do or games to play and Ryleigh will then be interested. Hanging out together and laughing with each other is truly a great way to lift all of our spirits.
Moment 2: Snow
Yes, Vancouver got snow! It was really beautiful. Especially after the dark quiet of Ryleigh’s room the past couple of weeks. But a couple of nurses decided to add something else to the view:
Moment 3: Visitors
We had some visitors come to the hospital. Apparently with the break for the Olympics they decided to use their time off to make some youngsters (and their parents) forget some of the challenges they are facing.
The visit was surprisingly uplifting for us – Ryleigh is not a hockey fan at all. She does not understand why grown men get paid lots and lots and lots of money to chase a puck on ice, with a stick, and on skates. “Mom if we took all the money spent on professional sports there could be enough money to stop hunger or to save a continent like Africa.” Hmmm she has a point. She did not want to meet them. She was tired and really had no connection with them. Now, me not so much…I am a hockey fan – Oiler Fan mostly- but I was not going to go without a picture. They came by…we raised the blind and they called to Ryleigh, knocked on her window, and said Hello. Ryleigh was slightly embarrassed but she definitely was giggly and it made her chuckle just because they were being silly. She was not very happy with me as I opened the blind but I told her Karen (her nurse) made me do it. We all had a good chuckle and she enjoyed it. She also got some autographed cards from the them. I think I will keep them in a safe place – I know of some Canuck fans in my family!
I have been very exhausted and my body is starting to show it. Cold sores, pulled leg muscle and/or tendonitis, headaches, and difficulty sleeping. These moments over the past few days have given me energy to keep going. I made sure that I found opportunities to reset and gather up some energy to get through each day. I cross my fingers that tomorrows blood counts are better…thanks everyone for your positive comments and thoughts. They lift my spirits too!
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