carefree days at the lake

Here's the newest color challenge on the Color Me Scrappy blog. The palette of Challenge 55 makes me think of sunshine and warm carefree summer days.  Before I share my layout, there is a DT call going on right now, but you have to hurry- it ends on February 10th. You can get all the details by clicking here. I encourage you to apply- it is such a great team to be on! 

Here is the sketch for this challenge:

My layout:

OK- I am going to get deep here. ;) This photo was taken of Ashlyn almost 6.5 years ago and you know what, the is now 14 and this swimsuit still fits her. Even more shocking to me is that she looks so much better in this picture than she does now. I didn't even realize it until I was adding the finishing details and really started looking at the photo and realized how long she has had this suit. She has meat and substance here. Now she is literally just skin and bones with no muscle definition. She couldn't stand tall like this today. Never in a million years would I have imagined that this would be one of the last "healthy" summers for her. Life sure does take one down some unexpected paths. I wouldn't change what I have learned, but I sure would love to see my girl looking like this again- carefree and just being a kid. 

That being said, she is making some progress. She can walk around the house with a walker, although some days she doesn't have the strength to do this so we push her around in an office chair. When we go out, we have found that it is better to use a wheelchair because just walking for more than 50 yards tends to make her leg muscles weaken and buckle. She has grueling physical therapy three times a week, which is hard on my heart, but she is gaining some strength and has more energy. She works hard and pushes herself even harder. She complains about having to do therapy at home, but does it anyway because she knows it is going to help her get well again. I am extremely proud of her!!! She finds it encouraging that her therapists compliment her and recognize her efforts. They continually tell her that she does better than most adult patients. That helps to keep her motivated. 

She had an appointment with a neurologist last week and I am so happy because she doesn't show any signs of having a muscle disease!!! We were a bit worried about this as she has very little muscle tone. The good news is that she should regain a lot of the muscle back with months of PT. This is all caused by malnutrition which is a huge issue among Crohn's patients, although her case has been more extreme than most. 

She has a surgical consult this coming Friday to get a feeding tube directly inserted into her stomach so she will not have to have the ng tube down her nose and throat. She is having such a hard time with it this time- her poor nose is raw and cracked and swollen and bleeds all the time and her throat is constantly sore. We are hoping to get the tube placed asap. We are also going to take her off of all food for the next year, once the g-j tube is placed. She has dipped down in her weight again and in the past when this has happened she has taken nothing by mouth for several months at a time and she gains weight. She is 76 pounds now and they would really like her to be up around the 95-100 pound mark by her 15 birthday in September. 

The past few months (well honestly years) have been among the most difficult for me. It is exhausting and challenging to have to take care of a 14 year old as if she were an infant. I am managing to work 27 hours a week, take her to all her appointments (she has had 5 each week for the past 3 weeks) and even squeeze in some creative scrapping time. I need it. Sometimes I wonder at the end of the day how I managed to even make it through another day, but I do. I will continue to do. Someday this will be a thing of the past and it will seem impossible that we have gone through it yet again. This is the second time in three years that her body has done this, but this time she regressed rapidly and her climb back has been a lot more difficult and longer.