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Health Update on Addison

Since Addison's birth it has been a roller coaster ride for us in regards to her health.
But I knew that we had a fighter on our hands. While I was in labor the doctors were surprise that her heart rate never dropped in the long labor. They were even more surprised that her heart rate didn't drop or increase after they saw the bruising that she had due to the long labor.

In late August Addison was diagnosed with congenital atresia of the intrahepatic portal venous system with portal hypertension. If you are like me you probably would have just stared at the doctor like he was crazy insane mental unbalanced kooky!  Basically it means that she is missing veins in her liver (I included a link at the bottom if you are interested in learning more about it).  Her body created  (God created) a natural shunt for the blood to flow in and out of. Many children with this disease have to have a shunt put in but not Addison. Because her liver isn't working properly it has caused her spline to be enlarged. Our job is to watch for any changes in her sleeping patterns, temperament, watching for yellowing, or change in stool coloring.

We were prescribed several different medication that she had to take three times a day. It made going anywhere a nightmare because it had to be added to expressed breast milk, that had to be kept refrigerated. She was to go in every 4 weeks to have blood drawn and then to see her GI specialist in Spokane. After several appointments the Doc was extremely pleased because her levels had come way down. He ended up taking her off the medications. We have been medication free for several months and her levels have not gone up! PRAISE JESUS!!! There was a moment after he told us the good news that I did not feel excited. All I could think about was the what ifs. I didn't want to celebrate because what if next month she has to go back on them. What if next month her shunt closes. What if, what if, what if! But those thoughts were followed quickly by this one "Are you going to let your fear (satan) steal your joy? Are you not going to rejoice that at this moment you have a healthy baby? Celebrate today and DO NOT worry about tomorrow!" God was there, in that moment, to remind me that I can't let anyone steal my joy.

Today we saw her liver specialist from Seattle. He too, was impressed with Addison's growth, weight gain, and the FACT that her levels have remained normal! We were given permission to let her eat whatever we were eating (before she was only aloud fruits and vegetables).  This was exciting news for us. We are still going to stay away from red meats because that kind of protein is more difficult for her liver to break down and may cause her ammonia levels to rise. But who cares!


God has made her body to fight. She isn't going to let this disease stop her. 


Tonight she had her first taste of noodles and chicken! She loved it. Seriously, we couldn't feed her fast enough. Also, where is my baby and how do I get her back??


Comments

  1. UnknownJanuary 31, 2018 at 8:27 PM

    Em....she has a noodle coming out of her mouth!!!!😂😂😂😂😂😂😂

    ReplyDelete
  2. SueFebruary 1, 2018 at 6:46 AM

    Sharing your joy... And praising Him!

    ReplyDelete

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