Thursday, November 15, 2018

So many things have changed and happened in our family.   I feel like things kinda went to pot for a while, but now we are coming back on top.   We all struggled so much after our little angel Halie died.  Then just a few weeks after that we had some of our family friends die in the airplane crash.  We felt like our family could not take anything else.  But then we had something else hit us so hard and knock us down even more.  Our sweet Mia was diagnosed with autoimmune hepatitis.  It is a disease that attacks your own organs and there isn't really a cure for it.  She has had it for probably most of her life and for the past five years when it was getting really bad she had just learned to live with the pain and not complain to much.  She is for sure one tough girl!  But in 2017 during the summer she started to get really bad leg cramps and had stomach problems that the doctors just kept saying it was because of gluten.   When she would get a leg cramp it would put her to the floor and she would cry and no one really knew what was going on so we all just thought she was being a drama queen and would give her some meds and tell her to be tough kinda.  She had a bad summer with them but played and had fun anyway.  She wasn't herself and we thought she was just turning into a teenager.  Elizabeth and her are best friends and even they were not giggling and playing like they normally did.  Mia wanted to sit around and was really tired and they just didn't do much.  WE kept making them go do things and she would.   She even went to a byu volleyball camp even though she was in pain and did not feel good at all.  After the summer she was home and sara took her in and told them to run every test.  It didn't take them long to see that her liver levels were crazy and they got her into Primary Childrens fast.  It was all a whirl wind from there.  She had been living to the last point that her little body could take it.  Her liver was shot and doing nothing it should, she was lucky to be alive.  Most kids are diagnosed much earlier, and Mia really could have been if the doctors would have looked into her instead of saying to change her diet.
She was in the hospital for a while back and forth and they were put on the list for a liver transplant and given loads of pills to take.  Family members all volunteered to be a liver donor and they had started the test on Sara and her sister Ashley.  I was on the list but was never called in to do the test.  While they were doing test they had a couple calls that ended up falling threw for a liver but then one call that did.  It was such a miracle and just amazing how everything fell into place the way it did and when it did.    I don't know how much longer mia could have gone threw what she was and she was getting so bad.
I had gone to st george and had stayed the week to help sara paint.  Lizzy came with me and was hanging out with Mia and Lizzy kept telling me that Mia was being weird.   I kept kinda getting mad at lizzy and telling her, "I know she is sick and you need to be nice, just go hang out with her and be nice"  but then I had asked Mia what time it was and she said, "40 o clock" and i just laughed and thought she was being silly.  But then a little while later lizzy came to me and was almost in tears and said, "mom, mia is acting really weird"  Brad went in to talk to her and she wasn't making any sense and kept saying she wanted to go home.  She started to throw up and do some other things that we knew something was wrong.  Sara called Primary Childrens and they said to bring her in as soon as we could.    So I was heading home anyway so they all jumped in my van and I started to drive.   Mia kept doing weird things and would fall asleep for a second and then sit up and flop back with trying to say something.  She kept doing it again and again and it was very scary.  Sara called the hospital again and they said that she was having HE symptoms where the disease was attacking her brain, and we needed to pull over if she had a seizer and call 911.  We were close to Cedar City so I just went as fast as my van would go and we got to the hospital and they were waiting for her and had everything she needed ready.   It was such a blessing.   After we looked at what was going on we figured that her head flop she kept doing and her eyes rolling back was her way of having a seizer so she was very lucky to not have anything happen on the drive and to make it to the hospital safe.    It was one of the scariest things I have done and watched.  
Mia is such a different kid this year.  She feels better than she has ever remembered feeling and she is so outgoing and happy.  She is such a good girl and just a sweetheart to everyone.  She has a heart of gold and wants to help everyone.   I am so thankful that things went the way they did and that she was able to get a new liver when she did.  I am so thankful for organ donors and for what it has done for our family.  

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