In May we had a major snag in the fabric of our lives. Elaina was wasting away to virtually nothing and we finally got a Doc who knew what he was doing and diagnosed her with Crone's disease. We have since learned that this is an acute inflammation of the bowels caused by the immune system over reacting. Elaina has severe diffuse involvement of her GI tract with extra system involvement of her joints. Sounds serious, and it is. We have been painfully making ground with her recovery and how to deal with this as it is a life long challenge she will have. Part of the challenge is figuring out what medications will work and what ones don't. We will see an endocrinologist on Monday, right after we see her GI specialist, and then on the 9th we will see a rumatologist for her joints.
In all of this trial we have been going through, as difficult as it is watching her struggle and trying to figure out what relieves her pain and discomfort. We have to admit with out sounding like over zealous weirdos... we have seen the hand of God in our lives. We have been to our pediatric MD who on a Monday, ran some tests and refered us to Children's in Seattle. On Thursday of the same week, we were admitted to Dr. Christie who just happens to be the top Pediatric GI specialist in the greater Northwest. (who by the way, was not seeing new patients.) We had a CT scan on the next day, and rapidly progressed to Endoscopy with a diagnosis that same day. Then we went home, and were back the following day with a child knocking at heaven's door. Literally. We knew she was sick, just didn't know how bad. Elaina had dropped to 48 pounds and her blood pressure was dangerously low and her heart rate way too high. Children's took us in and 10 days later, we were allowed to come home as long as we had 24/7 medical care. Here is where we really knew we were blessed. I am licensed and qualified in the state of Washington to do home care. I have many friends who live close by who are also more qualified and licensed in the state of Washington I could call for help. Dan's mom came and stayed with us for a month. We had friends and family praying for us, doing our childcare, bringing us meals. My co-workers opened their generous hearts and poured out financial aide to us by donating their sick time and vacation to me so I could stay home for a month as well as giving us money to met the bills that were still coming in. Dan's co-workers kicked in and took over his class room management and donated lesson plans so he could be off with us too. It was a time of humbling experiences and heart breaking kindness.
Now, it's a daily grind. We have to keep her hydrated, fed and gaining weight. It's a daily struggle. We also have to not forget the three other girls in the house. They sometimes get frightened when Elaina is too ill to get up and walk on her own. They sometimes will be come resentful of Elaina not being able to go and play with them, or when one of us cannot take them to do what they want to do. Or it is too difficult for Elaina to walk the malls, go to the fair, ride the rides or go to the beach. It's hard to keep an even balance in our lives.
But then there are days when they all can laugh and giggle and we hear the joy in our home again. There are times when it breaks my heart when I come upon Elaina and Eryn leaning into each other, heads together reading. Or Eden asking Elaina to help her with her math work book and Elaina is a patient kind teacher. And when Emily bakes something but knows Elaina can't tolerate something and will make special ones just for her.
There is peace and joy woven into the fabric too.
