Miss Evy's update

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This weekend Evy and I took the train into the city to stay with dear friends, meet with the amazing team of folks that will soon join us for a couple weeks on our island, and be there early for Evy's appointment at Rush this morning. Evy loved the train and flirted with everyone that would respond to her little grins. Sweetie. She also soaked up time with two rough and tumble boys that we love dearly; thanks Studees!
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heading to church with friends in Chicago

Here is the latest: She had her EEG first and the technician was so kind and tried so hard to distract her and help her cope but let's face it getting 25 wires glued to your head is no fun and for a baby it is confusing and scary. She just kept looking up at me like "Mama, why?" and all I could do was hold her arms down and hug her. Pole Evy!
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not lovin' her EEG- getting things glued to your head pretty much sucks...ask Evy!

She never fell asleep but once they were all in place she just snuggled and sat still and quiet for 40 minutes while they watched the screen. She did great! I thought she may actually fall asleep since she had tired herself out so much what with all the crying and trying to rip out said wires but she decided it was much more fun to sing, poke me, and pull out my nose ring (I know that takes talent!).
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see...it wasn't that bad

After the 2 1/2 hour test we went to see the specialist and got all the blood test results from last week. While we were waiting Anni and my Mom joined us which was great since we missed them and Evy was so happy to see them. Then Evy and I saw the doctor. Evy was making me a liar yet again smiling at everyone and being he usual mischievous self. Her new nickname is "Faker." She really is doing great but we still want to figure out why she has been so sick for so long. Her Xray showed some things we need to follow up on and some of her blood tests were abnormal but showed her body was fighting hard and he thinks she does not have an auto-immune disorder. Yeah! He is a great doctor and really is going out of his way to help us-such an answer to prayer. In short, the doctor thinks Evy has Hepatitis because her liver levels are abnormal. So sad. And yes there is a vaccine for that but she had not gotten it yet because she has been so sick since November and unable to get it every time we had made an appointment on the mainland. I just feel so much relief in starting to figure out what has been going on, getting answers, and being able to help our girls be healthy. We gave her 4 vaccinations today followed by 5 more blood tests to confirm the type of Hep she had/has. It was a rough day for Miss Evy Imani. The big story is she is a fighter and our warrior princess is doing great and God is good. Thanks everyone for prayers, love, and kindness. It has really been overwhelming and I am praising God for it.

Comments

Jason said…
Oh the pic with the EEG is so sad!! So glad that we are getting some answers, though. Strange - she was fully vaccinated against Hep B but I don't see in her records anything about Hep A. Love you and miss you all!
Emily Clarkson said…
You're gorgeous. Lifting you all up!
Griffen said…
Well that IS an answer!!!! PRAISE GOD for answers. Praying that all the other tests are conclusive and affirming. Yes, hep is sad in a wee babe, but it must feel so good to KNOW. We're still praying every day!
Unknown said…
we're still praying for you all. i know what it's like to not know what's wrong with your baby. we'll keep praying for answers and health.
Anonymous said…
Hep A you can´t vaccinat before the kids are 2. Hep a + b in combination you can already vac. when they are 1; and this is, how we did it with our kids. At least these are the regulations I know from germany.
Great to hear, that she is very fine in the moment and I hope, that this will continue!!! Today I talked with tree women (2 Expats) and they told me a lot about strange sickness, high fever,diarrhea, tummy pain their kids are suffering quite often here. Was very interesting to hear that!
Greetings to your sweet girls and you :-) DORO
jkww said…
Wow! Rox! You and Evy both look so beautiful, even with wires and tape... Praying and Praying.
Cha Cha B said…
I'm so glad you are getting some much needed answers. Poor little girl, but she is such a trooper to start playing around with you when she realized there was nothing that could be done. Shows she's got some good flexibility and roll with it genes in her. I think she gets that from her wonderful parents. :)
Thanks for keeping us updated. Love you tons!
misskatiez said…
so good to hear that you guys are getting some information and answers to your questions!

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