As some of you may know, our youngest dd, Ashlyn, was diagnosed with Crohn's disease near the end of April. She is 11 and has been ill for most of her life.
For the first time in years we finally have a ray of sunshine, and I couldn't be happier! Her medication is working, in fact her inflammation levels went from being in the unheard of highs down to nearly normal in just 5 weeks. With the help of the ng tube she has had since mid-Feb, she has been able to absorb the food and has even gained 20 pounds since then. Her body is finally acting "normal". She has been hanging out with us more and her spirit is coming back! Her laughter makes my heart full and my eyes tear up... it's been too long since we've heard that sweet sound. :)
Our current goal is for her this week to be able to drink between 1800-2000 calories during the day (5- 375 calorie drinks), so we can take her off the overnight formula feeds and remove the ng tube. This process is going a little slower than I would like for it to go, but I am hopeful by this time next week she can pull it out and toss it.
The next step is for her to slowly start eating solid foods and replace most of the beverage calories with food calories.... easier said than done since she needs to follow a peanut-free, lactose-free, Crohn's diet. But, we'll get there a day at a time. It's going to be a battle and it's going to take months to get into a "normal" regiment of eating. She's associated food with making her sick for most of her life, and her body just flat out started rejecting food back in Jan., and she hasn't had solid food in nearly 2 months now. Fun times ahead (NOT), but we can work with what we know and take it one meal at a time.
Now that we have a diagnosis, and her health is improving, I have spent a lot of thinking about what's next. How do we create a "new normal" as we move onto the next chapter in our lives. After much thought, I made a huge decision- today I officially unenrolled her from the Virtual Academy she has been attending for school the past two years, and enrolled her at the local Middle School. Although she hasn't completed all of the 5th grade curriculum, she will still be able to slide into 6th grade. I have truly enjoyed being with her the past 2 years, and have enjoyed learning along with her, and teaching her, and learning more about her, but now that she is in Middle School there are so many things that she will get to expereience by attending school, that I would not be able to offer her. She also has a lot of anxiety about school, and people/crowds, and her health in general, and she needs to learn how to cope with these things in a positive manner. It's going to be a huge transition for us, but a good one. I spoke with the principal today and he listened to my concerns and adressed them seriously. So many things have changed in her life since she last attended school. She now has food allergies that require an epi-pen, she now has a disease that will require her to take medication at school daily, and at times might disrupt her attendence. She is worried about having an accident, or having diahhrea, or being called names/teased, or being tired, or the possibility of having a severe reaction to peanuts. These are huge issues for her/us, but to them they are something they deal with on a daily basis, and I feel good knowing that they respect these issues and take them seriously. The principle is even going to give Ashlyn a personal tour of the school in a few weeks, once school is out, so she feels safe with the staff, and her anxiety about school won't have to hang over her head all Summer. I know this will be a good thing for her. It feels right, although it is a bit bittersweet. My baby girl is not such a baby anymore. Middle School is a big deal. lol :)
I will be back shortly with some scrappy stuff. I haven't created anything new in weeks, but I have some work from April and May to share that I haven't yet. Until then, take care!
