I have been on the phone with doctors all morning. Our appointment with her surgeon is at 9:30am on Wednesday. We will be meeting to review the procedure and everything that needs to be done prior to the surgeries.
I also talked to her Oncologist and he has received a few of the tests back from last week. Thyroid test came back normal. Electrolytes in the blood came back normal. Prolactin came back high. Which they said they would expect as it is caused by Cushings and Hypothalamic Dysfunction. Prolactin becomes high when the Hypothalamus can not produce Dopamine - which causes your body to remain in a stressed state due to dopamine not being produced to calm you down.
More blood tests should be in today and the results of the latest Cushings test. All doctors will be meeting to review the tests and will get back to us with their findings.
Thursday we will be at JH all day. We need to arrive by 10am and the test will go through until around 3:30 pm. We will not have any news from these tests until later in the week or next Monday.
Haven is home with her dad and I'm sure driving him insane! :) It's her specialty. She is a non-stop talker and needs 100% attention at all times. You can only hope to be saved as she will pass out in the middle of a sentence....then you can take a breath! The more tired she gets the more she talks.
She woke up at 1:30 am last night and wanted to color. Both Kris and I were still up so I let her stay up until 2am. At 3:00 am she was still watching Incredibles in her room and then at 5:30 am I heard her slam her door shut. She doesn't like sleeping in a bed and was making her bed on the floor...her bed was too hard (not sure how the floor is softer). But I convinced her to come to our room.
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
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