Wednesday, April 27, 2011

Ashlyn has Crohn's Disease and 'Good Times' layout

Happy hump day. All the doctor appt's for the week are over- yay! I am looking foward to staying home the next two days. Life has been so full of visiting doctors, testing, traveling across the state, etc. There has been something medical scheduled for Ashlyn just about every week day that she has been out of the hospital back at the end of Feb. It has worn her thin and her patience is up. I am just running on autopilot now, taking things one day at a time. She has one more major test on Monday, May 2, which will be a CT-E- this will be the final piece of the puzzle and then we can continue to move forward.

Ashlyn was offically diagnosed with Crohn's disease on Friday April 22. I knew the diagnose was coming, but it was still hard to hear. At least we have something to call this "thing" that has wreaked havoc with her poor little body for the last 4-5 months, even years esentially. To our extreme frustration, the peds GI doctor here in Spokane was so stuck on her abusing laxatives and having an eating disorder, that he ignored treating Ashlyn as a patient, even with screaming, tell-tale lab results that clearly stated otherwise. We had to drive over to Seattle to take her to a ped. GI dr. there who took one look at her lab work and pretty much diagnosed her at that moment. Ashlyn should not have to be suffering as she is- it truly breaks my heart. Fortunately she has an excellent team of doctors now, and although traveling across the state takes a lot out of her, it is worth it to know that she will be well taken care of. For now she has been placed on two medications, and we are awaiting the CTE results to see where we go next- if there is not a lot of disease present in her small intestine then the plan will more than likely just continue with these two meds. If there is disease found, well- frankly I don't want to think about it- one day at a time. I will deal with that if I need to.
She is still continuning all her nourishment via the ng tube. It's been months since she's eaten a meal. It is going to be a process to begin the eating food again, but we don't need to worry about that just yet as the drip feeds are a part of the short-term treatment. We'll tackle that bridge when we are all a little bit stronger. lol

I leave you with a layout today. I used a Sassy Lil' Sketch as well as a challenge from a wonderful new store/message board called My Scraps and More. You should go check it out! There are daily challenges which are sure to inspire you and get your mojo flowing.

1 comment:

  1. Oh Rae...I've been following your blog for sometime now (I guess since CMK days) and I have been lurking to get updates on little Ashlyn. I am so sorry that she had to endure so much pain and trouble up to this point. But also soooo relieved right now that a diagnosis has been made! I love reading your updates on how she is doing and I do say a little prayer for her little body and spirit each time I read an updated post. (((hugs))) to you and praying for continued strength for you and her!


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