Some progress has happened this weekend for Ryleigh. Saturday was an excellent day!
Ryleigh showed a more energetic and positive demeanor in a variety of different settings. She was visited by Debbie and Nash, Michelle and Tiegan, and Aunt Jennifer, Uncle Dave, and Makenna. She was much more chipper and chatty visiting with all of these wonderful people. Not to mention, I so enjoyed the adult company. What wonderful friends and family we have. We are so fortunate.
She played, laughed, giggled, talked, and had fun. Ryleigh even got a pass to go out and she went out for dinner at a Cactus Club Cafe for their chicken fingers. She ate a couple, talked a bit, and then rested her head against the window. In a few minutes she had fallen asleep. She looked so sweet – reminding me that even though she is getting a bit better. She is still not fully healthy and we have to be aware of that.
Sunday morning I woke up feeling hopeful. Perhaps the steroids have helped her but the remicade is really working because she had a good day on Saturday. Maybe she will be discharged on Sunday. Unfortunately, she had a rough morning. She was fatigued and had more trips to the bathroom with more blood. The doctor said it could be that she has moved from IV steroids to oral. Her symptoms have not gone away as quickly as they anticipated. Many different things are being suggested – an earlier dosage of remicade – possibly next week? waiting out this dose? going back to IV steroids.
Also, she is experiencing pain in her left hip. It was originally thought that her hip was sore because she had been in bed for a long time. So on Saturday she got up and walked a lot more. Today the doctor took another check and they are wondering if her hip joint has become inflamed — it could be a side effect of the remicade or steroids, a symptom of crohn’s, or a permanent effect of being on steroids. Either way, they have made a request for rheumatology to come and take a look at her. She was having a hard time walking on it for extended periods of time.
This disease continues to be so tricky.
Luckily the steroids are getting her to have cravings and she wants to eat! From one extreme to another! She craves salty things and sweet things. Specific items like chocolate chip pancakes, fish and chips, chicken fingers, cheese, milk, and pizza.
Any fruit or vegetables? Oh my….calories or nutrition? Right now they are saying calories are good worry about nutritional quality later.
Her medications are being switched around — we are not sure about the benefits of the remicade until she is totally off the steroids. She is also starting methetrexate next week. It is a cancer drug that helps deal with the inflammation and immune system issues. It has some side effects that are not the greatest but right now we just want her to be able live a more normal life.
So she has made a few steps forward and a couple of steps back. But, she is progressing and has more of a sparkle back!
Tomorrow is more doctors, tests, test results, and questions!
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