Thursday, March 6, 2014

100th day of school

Hello! I have a few things to share today. :)
First off, I am beyond excited about this http://clearscraps.typepad.com/my_weblog/2014/03/introducing-amazing-new-clear-scraps-designers.html!!! When I initially saw the DT call I almost didn't apply, but I wanted to apply last year and didn't, so I figured I should at least try this year. It is better to apply and not be selected, then to not and wish I would have. I am really honored to have been selected, and eager to stretch and grow my creativity. :)

Secondly, I created this layout last week, but time really got away from me I forgot to post it. I used sketch 69 from My Scraps & More sketches as my inspiration and even pulled out papers I had been hoarding. lol




Lastly, Ashlyn had a pretty big surgery early Monday morning (March 3rd). For those who are aware of her history know that the last 3 years have been full of ups and downs and big health struggles with Crohn's disease, malnourishment, and Scoliosis. Although her Crohn's is not currently active (thanks to Remicade!), she was still having a lot of issues with eating, nausea, and not being able to maintain her weight, so another ng tube was placed back in mid December, with a consult for a more permanent feeding tube to be placed shortly thereafter. We decided to wait until she had gained some weight and strength back, and in mid Feb. we took her to a surgeon for a g-tube consult. At that time the surgeon reviewed her history and she went back to look at multiple tests she has done over the years and discovered that Ashlyn has severe acid reflux, enough so that even while we have been treating it with medications for the past three years, it is continuing to worsen causing her major issues. The surgeon highly recommended that she have a surgery called a Nissen Fundoplication to try to alleviate it, at the same time she had a permanent feeding tube placed. Ashlyn was all for it as she is so sick and tired of feeling, to put it truthfully- sick and tired.  

She handled the surgery well, the only issue being that the feeding tube that was planned to be placed was not an option once the surgeon was able to look inside her abdomen. Unfortunately, Ashlyn has scoliosis and this has caused the right side of her ribcage to turn inward, as well as shifting the entire ribcage to the right  thus leaving little extra room in her ribcage area. The Fundo already moved part of her stomach to fill that area, so there was not enough room to pull the mid area of her stomach to the abdominal wall, therefore she had to place the tube in the lower part of her stomach, requiring a more bulky tube. 

This photo shows her g-tube, which is where she will have all of her nutrition pumped through. They made 4 incisions, along with the g-tube site to perform the surgery. 


this tube sis about 15" long and about the diameter of a pen. It's big and bulky, and even in three months when she is allowed to "fold" it up, it will still protrude about and inch from her skin. 

I found this image on the web, and this is what she (we) was expecting:

It's a radical difference, but as Ashlyn always does, she has embraced this big chance with grace. We have a huge learning curve ahead with both the tube and the Fundo surgery, but these are positive changes and should greatly impact her quality of life. :)

She is still in the hospital and will remain here for at least another day or so. She is in a lot of pain and walking, talking, and sitting are extremely difficult for her, but she does everything she needs to do to help her get well. She is a warrior! The best part is that she hasn't had any acid or bile taste and burning, which she is beyond excited about! Even better for her is that she no longer has the ng tube. She spent a lot of time Monday and Tuesday just rubbing her face and smiling. (she's also pretty heavily drugged- lol)


This was taken right before they wheeled her away. Her last photo with an ng tube. :)

Thanks for making it through this. Blessing to all!!! I am feeling pretty hopeful and it is such a wonderful feeling! :)






4 comments:

  1. first of all...I hope that your daughter has continued to do well!!! I have read your posts on facebook and have been praying for you and her!! Secondly...congrats on the dt girl!!!! Thirdly...love your page! So glad to see you playing along with us at My Scraps!!!

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  2. I am glad to hear all went well!!!! And HUGEEEEEEEEEEEE CONGRATS on the DT!! So happy for you!!!!! I loveeeeeeee your lo!!! Such fun colors and loving the photo!!!!

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  3. That is so fantastic about the team! You will be a great addition! I don't know how you have the time, I have been keeping up with Ashlyn's progress from FB and saying prayers for that strong spirited girl, and you!

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  4. First off...my prayers for your daughter & family. But a huge congrats on the DT! Now your page...so awesome! Love everything about it. Thanks for playing along with us at My Scraps & More!

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I thank you so much for your kind comments! :) Have a beautiful day.