Update for January 7, 2013


Ryleigh has had a few more positive and upbeat moments. She is eating a bit more (thank you prednisone for giving her food cravings). She laughed and smiled a few times and even cracked a few of her corny puns! She is getting homesick but tries to make the most of being here. The doctor told her that she won’t be leaving until she eats a good amount of calories, drinking fluids, going to the bathroom a normal amount and not waking up in the middle of the night, and gaining some weight back, and make sure this is not because of the steroids but because other more longer sustaining treatments are working.

Tests: Ryleigh will have another scope done and MRI to see if they can identify the diseased parts of her colon. There is a concern that the diseased parts may not be visible with either method which makes the treatment more difficult.

Although they thought Ryleigh’s remicade treatment was going to be today. They could not give here the treatment. It lasts for 5 hours and she needs a specially trained one on one nurse to be with her. They were not able to provide this for her today. They are going to try again tomorrow but if they cannot she has her original appointment on Wednesday. Remicade is the last real medication option they have right now for Ryleigh the doctor informed me. There could be a chance for her to try Humera another Biologic but he did not seem to think it would help if she could not even respond to Remicade.

If Remicade works we should see an improvement in a few days. However, she has been put back on steroids and that treatment works well for her but she cannot stay on them for a long period of time and as a result when she goes off of them she continues to have the symptoms. So if she improves is it because of the steroids or the remicade? They will need to taper her off the steroids because it is dangerous to just quit them. They can taper faster in the hospital than if we were to do it.

Now if the Remicade does not seem to be working the last option is surgery. We met with the surgeon today only to meet and get the surgeons on board. Surgery is not yet happening but they don’t want any surprises. So they are setting the ball rolling to be prepared just in case .

Tim and Chloe are driving down on Tuesday to spend a few days with Ryleigh. That will be good for her spirits as she will have someone to go to the Teen lounge with. No adults are allowed in there and she is not ready to go on her own. We are also going to get Ryleigh to participate a bit in school here. Her and Chloe can go to the school room and work on some things together.

Good Nite

About WiseMindedLiving

Mindful living and a thoughtful attitude are the focus for Johanna as she navigates the paths of life that are sometimes daunting. Her journey as a mother and educator are interwoven as they are the primary motivators for her stories, reflections, and wondering.

1 thought on “Update for January 7, 2013

  1. Dear Jo and Ryleigh, All those drugs sound so familiar…Nash can totally relate especially with the eating part. If you are still there this weekend Nash and I want to come down. We would be there by noon Saturday sleepover and leave Sunday afternoon. Hope treatment goes well today or tomorrow. Hugs to both of you D

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