I continue to be impressed by the care Ryleigh is receiving. Tonight I gave her a bath and washed her hair. When I was combing it out her nurse offered to french braid her hair so that she wouldn’t have to worry about her hair the next couple of days. Ryleigh felt special and cared for. It was a lovely time for her – relaxing and distracting.
Ryleigh has a tough couple of days ahead of her. She needs to prepare tomorrow for a colonoscopy on Friday. Tomorrow she is on a liquid diet and has to drink a special but very yucky drink that helps clean out her entire colon so they can have a good look. It is an unpleasant day for her but at least she knows what to expect which help reduce her anxiety attacks.
Ryleigh’s condition has the doctors perplexed. When the surgical team came in today to chat they could not believe that Ryleigh has been experiencing bleeding for the last year and a half. Ryleigh was very confident in telling them that is the truth – she has been dealing with it for a lonnngggg time! The surgeons believe based on her symptoms and most recent colonscopy that she has ulcerative colitis. If they had their way she would be in surgery next week – they even had a surgery time in place for her next week! The GI specialists are not as easily convinced. Many of her symptoms are what Crohn’s is about.
Tomorrow they are taking a special blood test so that it can be sent down to San Diego, CA. There is a specialized lab that will look at her blood and analyze the different proteins and other markers to be able to identify if she is suffering from either Crohn’s or Ulcerative Colitis. The treatment is not much different. Personally, it is just a label. I just want her to improve. We will find results early next week and then more decisions will be made.
Thanks to all the visits, gifts, balloons, and well wishes. They lift our spirits and help all of us realize how truly blessed we are.