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!
Jan 2012 we moved back to Spanish Fork, UT. We found a house for rent that is almost the same amount of rent we were paying for a basement. This house has 4 levels and we LOVE it here! The only problem is we wish we could take our old ward with us here (Mountain View 1st Ward)! The ward in Payson really came around us and helped us when Lilly was in the NICU. We will always be in there debt. They showed us the True Love of Christ. But our new ward here in Spanish Fork is nice. Still trying to get to know them.
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!
In February we came across a problem. When Lilly re-fluxed, she threw up ALL of her food, and started turning blue in her lips. I do not like the color blue on my baby's face. So I called her doctor from the Dysphagia Clinic at Primary Children's. Her name is Dr. Molly O'Gorman. She suggested we bring her in and replace the G Tube for a GJ Tube. The G stands for Gastrostomy; and the J part of the tube stands for Jejunostomy Tube. The G Tube goes directly to the stomach, the J bypasses the stomach and goes to the Jejumostomy (intestines). By it going directly to the intestines, it is supposed to make it so Lilly will not throw up. The thing that would be more difficult is that we would have to have her on a continues fed at a slow rate, so she would always be hooked up the food. Well, we took her to Primary Children's Hospital in SLC and put the GJ tube in. I dropped by my sister, Rachael, house on the way home. I was feeding Lilly. Well, Lilly started throwing up again! Because her stomach was empty she was throwing up stomach acid which was a florist green color. It was so painful for her, and before with the G tube her lips turned blue. Well this time her WHOLE HEAD turned BLUE!!!! I was pissed at the situation, cause it was supposed to help her! So I called every doctor I could, until one called me back! It was Dr. O'Gorman's day off, but she got my message within a few hours, and called me back. She told me to take Lilly to the ER at Primary Children's, and they were going to admit her. So that is what I did.
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!
Logan and the hospital. He loved the wagon!
Kody and his biological sister, Jenny-Lynn at the hospital. Jenny just found out that Kody and Jeriah were her biological brothers. The boys have known for years. But Jenny just figured it out. She was so happy to know! The boys are happy to not have it a secret anymore!
Kody hanging out at the hospital playing with Lilly's iPad.
Logan playing in the Playroom at Primary Children's. One of the reasons I love this hospital is that they have volunteers to get your kids and take them to the playroom. The volunteers LOVED Logan! His nickname was "The Happy Baby."
Kody loving on Lilly in the hospital
This is the GJ tube. This thing was MASSIVE! I am glad we are back to the G tube!
Logan and Lilly taking a nap in Lilly's bed
I started a CP group on Facebook called "Utah Parents with Children with Brain Inhuries and Cerebral Palsy." Some of us got together at Primary Children's. Cause I lived in Spanish Fork, and they live in Odgen, we decided to meet in the middle, SLC. Well, we were trying to figure out where to meet, and we realized we ALL knew very well how to get to Primary Children's Hospital. So we had lunch there.
We call Logan the "Happy Spitter!" There was a huge difference of normal baby re flux (Logan) and what Lilly was doing! Logan got daddy good! Good Job Logan!
Right after we got out of the hospital we got Lilly a helmet for a few months to help with the flat spot of the back of her head. She only had it until the end of April!
My cool little man, Logan
Jeriah sleeping with Logan and Rosco
In March we made a trip to KY. To visit Rocky's family. It was during March Madness. So Logan and Lilly became HUGE University of Kentucky fans! This year UK won the session!!!!
Kody decided to move to Oklahoma for a while to spend time with his Biological Father, Wamni. He is a really good guy. When we adopted the boys we were lied to and were told that Wamni was dead, and this awful guy. In 2008 we found out that he is actually alive, and has been searching for the boys all these years. He was so happy they were in a good home. For the past few years, we have let the boys visit Wamni, and it has been a good experience. Wamni is Native American, and teaches the boys about their culture. Kody turned 16 on April 9th, and he decided to stay with Wamni for a while now. We miss him like crazy, but I think this is a good experience for him. It is not always about what I want as a parent, but want is good for him. He also has so really bad influences here, so he is nice and far away from them!
In KY with Mamaw! (Rocky's mom)
In KY, Logan and his cousin Deagon
In KY with Papaw (Rocky's dad) and Logan and Lilly's aunts; Tammy and Autumn (Rocky's little baby sisters)
In April we went to the Aquarium. It was so good for Lilly, cause of her Cortical Visual Impairment, it is easier for her to see the fishes cause the aquariums light up!
Lilly has started to flip over in April! We put her down for a nap on her back and she flipped to her tummy. I am so proud of her. It is almost June, and she does not do it a lot, but every once in awhile she flips. Slow progress is STILL PROGRESS!
Easter Sunday!
My beautiful baby girl on Easter Sunday 2012
My cute lil man!
Logan cracks me up everyday!
We went to the zoo in April with Cousins! All of Sarah's kids and all of Rachael's kids, with Lilly, Logan and I. It was a fun day.
Lilly loves playing on her iPad!
My friend showed me a place on Facebook where they give a Build-A-Bear Stuffed Animal with the same kind of tube the child has. All they charge you is shipping and handling! So I filled out an application, and Lilly got a bear from "Tubie Friends." The bear is named "Hugs." She also has a G tube and a vent in case the Bear needs to be vented too. It is soo cute! Lilly loved to touch Hugs! The only problem is, it is another tube that Logan likes to pull on.
Logan figured out it is much easier to crawl holding the toy in his mouth. He is my smart little puppy!
Lilly and Logan Loves each other!
Beginning of May, I got Lilly's ears pierced. I love dolling her up. I had my ears pierced YEARS ago, but never wore earrings. So I decided to get my ears pierced again with Lilly Bean. I love this picture, it shows how sweet Lilly really is!
Jeriah got his level 2 from his group home. She he has been coming home on 12 hour visits. Rocky picks him up at 8 am and has him back by 8 pm. Well, I am so proud of him, because he just advanced to his level 3. Which means for us, he gets to come home for 24 hour visits. He gets to sleep over once a week on the weekends. In a few months, if he keeps up the hard work, he will get level 4, and get 36 hour visit. At level 4 is where they start trying to keep him home for good. The state thinks he will be out by the end of the summer if he keeps the hard work up. I am so proud of him! I LOVE my Jeriah!
Lilly LOVES her Daddy! She is a daddy's girl!
This is the first time we put Logan in a swing. He just laughed and laughed! He LOVED it! His laugh is best laugh in the world!
Memorial Weekend, I turned the Big 30. I am officially old now. LOL. Rocky threw me a big Luau, and lots of friends came. It was tons of fun. Then on Memorial Day we went to Heber with my mom, her friend, Joe, and Rachael and her kids. We rode on "Thomas the Tank Engine." Logan is very fascinated with the conductor!
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!
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