We're Home!

We were released on Tuesday late afternoon to take our Symi home! She is on 5 different medications and a specialty formula that costs $65 for a 14 oz can! But putting it all together she is eating again. And she was eating enough to keep herself hydrated and maintaining her weight. So they sent us home.

Dane wanted to put a sign on our front door that says "Pharmacy". Seeing how between me and the kids we are all on 10 different medicines! Wow! Anyways, we are so glad to be home. We have to keep a constant record of her eating habits and medications. These last few days have been rough and hard to remember everything. But I'm sloooooowwwwllllyy, starting to remember.

She is acting SO much better and really is such a happy baby! She is trying to roll around more and more. And reach for everything. Then try to get it to her mouth as quickly as possible. She has been squealing, giggling, and jabbering so much! It's so nice to see after so long of not having her happy. When she and Ben saw each other for the first time in almost a week, Symi could not stop smiling! And Ben didn't want to leave her side! I as a Mom melted to see how attached they are to each other and how much they really care for each other too. It's amazing that even though they are so young they already have such a bond!

The only thing that she's still struggling with is sleep. She really has a hard time at nights and Dane and I take turns with her. Last night on my shift she pooped, and then was up for 2 hours straight. We had a good time together. Her being fussy and me walking back and forth with her until she fell asleep. Then I quietly laid her in her bed, kissed her cheek, and listened to her sign quietly as she fell into a deeper sleep. I'm so blessed to have such wonderful children. Despite all the health problems they have, it's not so bad. I love them both so much!

We also wanted to say a special Thank You to everyone who participated in our fast for Symi. We have a strong testimony now as we watched miracles and blessings happen from fasting with such faith. The Dr's didn't think we'd leave for a long while. They were so shocked when she made such a HUGE and quick turn around. Going from being so sick to being so well! We are truely blessed.

Hope that you all had a wonderful and Merry Christmas this year!

Primary Children's

We returned last night and I was going to write. But Symi was restless and fussy. So I spent my time with her instead.

We went to Primary Children's Hospital yesterday for an Upper GI on Symi. We've already done this test on Ben so sad to say but it wasn't new. What happens is they get the child to drink barium then they take several pictures while it's going down watching for different things while she drinks. Well she drank 1/2 an oz. They wanted 4-5 oz in for the test. They gave us the biggest syringe I've ever seen and sent us back to the waiting room to see if we couldn't syringe it down her throat. She took a few more oz and then just started spitting it all out. So we finally put a tube down her nose and injected the rest into her stomach. She was a trooper until they put it down her nose. She got really stuburn and MAD!! wow! Anyways, the tube wasn't even in there for a minute. They got the stuff in. Took the tube out. Took several images. And said, "We don't know why you are here? Everything looks normal and just fine." We'll send the images and results back to your Dr. They sent us home to watch her and make sure that she doesn't throw up the barium and that it comes out the other end. And to keep her well hydrated

We went back to my sister-in-laws house and spent the afternoon there waiting for it to digest. We ate some lunch. Dane and I took naps. Then we packed up and headed back on the road.

When we got home I called the Dr and asked if he'd gotten the images that we sent. He look them up and said yes. I asked him why we went down there on such an urgent matter because everything looked so normal. He said that he and the Gastroenterologist wanted to know if her anatomy was backwards. (meaning that her organs were place opposite of what they should be) If she did, there can be lots of complications with that. Our Dr and the Gastro Dr both wanted us to be at Primary's for the test in case if they need to admit us and start correcting the deformalities if there were any. He said that we went down there not knowing because he didn't want to scare us or cause us to panic because they didn't know yet.

So we are home now. Things are going just fine. Her anatomy is in the correct place and she is slowly falling back into her "normal". We are monitoring her closley to see if this "episode" happens again. If so we are instructed to return to the ER again. But for now we are to treat her like she's just constipated. They want her on some juice everyday and if that doesn't work than try a glycerin suppository. (oh fun) We're hoping for juice. So far things are moving along by themselves. She is sleeping a lot. But that's normal. We're still trying to find sleep so the nap the other day was very welcomed!

I hope that you are all having and will have a wonderful Christmas! Ours is one we'll always remember!

BLANKETS!

A friend of mine has a goal of making a lot of blankets to deliver to Primary Children's Hospital down in Salt Lake City. She is looking for anyone that is willing to donate, make, or help with the creation of blankets!! She is getting some more information about regulations (if there are any) and is trying to get them all before Christmas. She wants to be able to deliver them about Christmas Day. So if you would like to help please email me at brittysue2@gmail.com and I will keep you updated on information as it comes in.

Let me know if you are willing or able to help out!
Thanks!