Nov 28, 2008


All my children are amazing. Each in their very own special way. Evie, she is an artist and a busy body. Always thinking, planning, doing something. Often involving excessive consumption of art supplies. But this Thanksgiving I was so incredibly proud of the way she put her talents to use. Her teacher had all the kids make a "Thankful Bowl" out of a tissue paper mache technique. It turned out quite beautiful in shades of red and orange. We took it with us to Thanksgiving dinner at my birth mom's house. We cut strips of colored paper and Evie went around and asked each person to write what they were thankful for and place it in the bowl. No small task since there were about 20 people there. Then she read them to the group before dinner as an alternative to saying grace which we never do in our non-religious group. She did a great job being brave and standing up to read them in front of a large crowd. I helped when she didn't recognize a word or couldn't read the handwriting. Everyone seemed to enjoy it and even get a good laugh out of it when one was read poking fun between cousins or when Adrian's was read saying he was thankful for his Pokemon book. It was a great idea and I think I might make that a family tradition.

There were many things I was thankful for this year but was only able to write 3 before Evie cut me off, saying that was enough, which I thought was funny. Apparently there is a limit on thankfulness. In particular I said I was thankful for three beautiful healthy children. I'm sure as my scroll was read there were some in the group who would question the honesty of that. But it is true. As far as children with major medical issues go Ainsley is pretty healthy. I am thankful that her airway condition hasn't worsened, caused her to need a ventilator and that she has not had frequent respiratory infections. In fact things have gotten much better for Ainsley over the past year.

Last Thanksgiving she'd just had double hip surgery and been placed into a spica cast which she wore for 3 months. She then wore a restrictive brace for 5 more months. Thankfully she is an easy going girl who handled the restriction with little frustration. Looking back I can hardly believe we made it through that time. She needed so much suctioning of the trach and had the vomiting issue on top of it. Positioning her was such a challenge. The special diapering and concerns about soiling the cast.....THAT is an amazing change, to be done with hip issues, what a blessing. Sure, we're still working on physical therapy but for the most part, we're done.

As a result of correcting her hips she was eventually able to learn to crawl in September! What an incredible change that has been! It is so truly beautiful and inspiring to see her work so hard to follow her brother and sister around the house. We are still in awe that she met this goal! When we placed in on her IFSP in June we really thought it might never happen. Little did we know she would amaze us by starting to crawl just 3 months later!

The trach and it's care, the cranial surgeries, the feeding issues, the eye issues, the concern about her brain development, the hip issues, the therapy it's all been hard, but the vomiting has been one of the hardest things to deal with. Every time it happened we knew it was hurting her airway (and that she'd never get the trach out so long as she kept vomiting), we were concerned she would aspirate the vomit and get pneumonia or lung damage, we had messes and laundry up the kazoo, and the frustration of knowing that she was losing calories and not maintaining an ideal weight plus the guilt when doctors and therapists would look to us as if we were doing something wrong. We made the decision to do a Nissen Fundoplication in October and have been very happy with the results (see prior posts) so far and are thrilled to see Ainsley have more energy and gain weight. She still has issues with coughing up secretions and it causing gagging and retching but at least the stomach contents are staying put in the stomach where they belong. We are having more challenges with oral feeding but I am hopeful that will come in time.

Many people give thanks at Thanksgiving for their health. Often people in hard times say "Well at least I still have my health, right?" as a sort of consolation. Few people truly understand what a gift our health really is. Having Ainsley, I KNOW that we are lucky that she is as healthy as she is and I KNOW I am blessed that my other two children have perfect health. Appreciate your own health and be truly thankful.


  1. Susan--
    That was a touching post! I sure appreciate health. Here is my email

  2. Susan, our kids give a whole new meaning to the word "healthy". Yes, Jack is on a vent 24/7, but he is amazingly "healthy". I'm happy for each and every day I stay away from doctors and hospitals.

    Wishing you and your family a very merry Holiday Season!