Jalien Update
We have made great progress over the last six months. The breathing technique was a major break through in Jalien's care. The first couple of times we tried it-it worked great. Within at least a half an hour she was good. Unfortunately, the last couple of times we have tried it- she has become frustrated that the bag is not going in and out and convinces herself that it is not working. The more worked up she gets, it seems the more severe the muscle cramps. Which could possibly be related back to becoming anxious over the whole idea. We have been so proud of her progress. Before we would have to immediately take her to the ER. In the past few months we have been able to treat her from home.
This past week has she has thrown up quite a few times, but were ecstatic that she bounced back twice. We decided to take the girls and cousin Zoe to the Drive in Last night for the first time. At the end of the movie Jalien wasn't feeling well and ended up throwing up a 3rd time- which basically put her over the edge. We have been trying to let her get to know her body. To be able to decide whether she is ready to eat, what food choices to make (healthy ones encouraged). However, Last night was pretty rough. She slept very little and was cramping the entire time. We tried the breathing technique and it was working, but she gets tired of breathing in the bag for a long time. We were up with her 3 hours with continuous pain. The worst thing about it was that she was begging us to take her the hospital. Pleading with us that she needed an IV. But, we had come so far with getting her well on our own that I didn't want to run to the ER right away with her. I held her, rocked her like a baby, rubbed her legs, played her favorite music, put on her favorite show- but still she was making very little progress in getting the sleep she needed. At about 5:45am she asked me to take her for a drive. She finally rested. I drove till 7:30. I am currently on about 3 hours of sleep and a Venti Iced Coffee from Starbucks. I was so proud of myself I had been sober from Coffee for 8 days! But after sleeping very little between 11 and 2 and then practically being up from 3 on, I needed something.
After countless prayers, hours of leg rubs and a couple hours of driving she is finally asleep, resting as she should be. Sleep is the 2nd major factor in her getting well.
In addition, we met with a surgeon last week. We presented him with Jalien's medical history and current obstacles. He is going to review her medical records and scans and get back to us on his suggestions. So far we are leaning against another surgery. We seem to be able to control things more- even if it does take a few hours. I am so very thankful for the progress God has made in her life. Little by little we are closer to healing.
XoXo,
Ness