Tuesday: Neurology appointment 12pm
Wednesday: Blood pressure check at pediatrician
Thursday: Radiation injection
Friday: mIBG scan and meet with Oncology
So we definitely have a full week ahead of us. We have to get her prescription for potassium iodine drops that she will take 2 times a day for 1 week - due to radiation scan. Meeting with Neurology and probably another MRI scheduled on February 4th. They want to discuss the behavior, weight gain, seizures, sleep episodes - so that will be a whole day.
Oncology says we have to get her off the blood pressure medicine before the mIBG scan. So we're cutting her back over the next 5 days down to nothing by the 23rd. So this is why the blood pressure check.
Haven has been a bit sick and achy the past few days. She's been sleeping a lot. We've been sleeping on the big heating pad - it helps her bones and aches.
We start the 3rd round of Cushings/Paraneoplastic testing tonight. This will be 3 nights at 11pm and two mornings at 8am of chewing on the cotton thingy. She's used to that so she's a pro. I'm sure when she wakes up she'll be excited to know I was able to find the tubes again. They are very hard to find and take a few days to finally locate a place that has them. Kris picked them up this morning when our attempt to last night in the SNOW failed.
Those are my updates for now. I have been on the phone with doctors since about 3pm and it's now 5pm. Talk to everyone soon!
Love ya
M
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
Misty I was not going to check tonight but nothing could keep me away. I will be having a untrasound of my liver on Feb.4;Grams Birthday. The doctor says I am having post stress disorder due to Grandpa. Let Haven we are all thinking about her and love her very much. Tell to also have a nice Birthday Party
ReplyDeleteHaven!! You look so beautiful in this picture!!! I hope you are feeling good and know that things will get better! We love you! :)
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