Sorry, I have not updated this blog for awhile, life gets crazy sometimes. I am going to try to update key pointed that has happened for the past 5 months!
In January, in my old old ward (Canyon View Ward), I went on a women's retreat in Draper. It was a lot of fun. I went there the weekend that Rocky and Kody moved into our new house. I was allowed to bring the babies because they did not crawl at the time. Now Logan crawls around EVERYWHERE!
The hospital ran a bunch of test on Lilly, to see how bad her relux really was. She failed all the test with flying colors. The confirmed the Acid Re flux Disorder (GERD). They put a tube down her throat for 22 hours. In that 22 hours, it showed that the acid went up and down her esophagus 84 times. When that happened the acid levels went down into the 2 and 3 levels. A quick lesson for those that don't know what that means, cause I had to learn. Level 7 is normal stomach levels. Level 14 means it is very watery. 0 mean it is pure acid. Lilly's had so much acid in her, it was burning her esophagus! Dr. O'Gorman sedated Lilly and put a tube down when a camera to look at her esophagus, and it had parts that was damaged.
The hospital asked if we would be willing to be a part of a study, and see what would be better for kids like Lilly that has brain damage. Rocky and I agreed, as long as we got to pick the treatment plan. They will be following Lilly for a little while. Anyways, because of all the pain Lilly was in; because she was not gaining weight because she spit it all up; because GERD usually does not go away with kids that have Spastic Quad Cerebral Palsy, we decided to get a surgery done called a "Nissen Fundoplication." With this surgery, they basically tie the bottom part of her esophagus and the top part of her stomach, which will make it hard for her to throw up. They put the Nissen in loose, so she is ABLE to throw up, it just makes it hard for her to throw up. The thing that sucks about it, is you have to "vent" her to get air out of her belly. She looks like she is going to throw up, and starts retching back when she needs too, so I just connect a vent at the end of her G tube (which they gave us back the G tube) and get there air out of her. Since, the surgery Lilly has gained sooo much weight! And she has been happier!
Much more has happened, some good, some bad. Like I was diagnosed with Fibromyalgia, and my back is KILLING me again! Some good was I got to see how it would be to be an ASL teacher. I became a long term sub for my friend, Bernice Thompson. I had so much fun teaching those kids. But it was a lot of hard work too.
Rocky worked as a Adaptive PE paraprofessional for Alpine School District. He loved working with those kids. But next semester he will be student teaching. Which means next December, he will be graduated with his BA.
I also started an ASL class for parents with Deaf kids or disabled kids for Kids Who Count Early Intervention. I love working with the parents!