Today I was on edge, but Malachi had a good day - no seizures.
When we woke up today we just chilled, Malachi woke John up at about 5:30 and I woke up at about 6:15. Simon slept in until 8:00 and we decided we should start moving for the day. John got Simon out of bed and I was taking care of Malachi. I was doing makeup in Malachi's bathroom when he was showering (it's hard for me to be too far from him right now) and I heard John say I should come look at the pattern on Simon's face. Here I thought that he laid on a stuffed animal for a long time, but when I got into our bedroom where they were I noticed the rash that was on Simon's torso last night had spread all the way up his head and his eyes were a bit puffy. We assumed that it was a reaction to the medicine he was taking for the infections.
I finished my makeup and called the Embassy nurse to inform her that the whole Roy family was coming to her office this morning because of Simon's rash and because we needed her to confirm with the neurologist what was going on today. I fed Simon a bottle, got Malachi's backpack with a snack and some homework together (felt like I was so prepared), and we left for the Embassy.
Once there the kids and I went to the Health Unit and John went to the Front Office (Ambassador, Deputy Chief of Mission and their admins), to inform the admin of the Ambassador that he might not make it on the trip this weekend that he was supposed to be control officer for. It turns out the Ambassador and DCM were in a meeting, so John went to talk to them and they were very supportive and understanding.
He joined us at the Health Unit where the nurse had agreed with what we thought about Simon and was trying to get a hold of the Pediatrician to see what he wanted to do about it. She took a look in his ears and confirmed that both of them were red and a bit swollen. The Dr. decided on Zithromax for three days - good. One problem solved.
While we were sitting in the reception area of the Health Unit, the Imaging center at CIMA called John's cell phone to make an appointment for Malachi's MRI, with contrast. We made it for Saturday morning. Throughout the day there were emails and phone calls and much confusion about what was going on. Finally John got a call from the neurologist mid-afternoon who said that we could do an EEG on Friday morning or Monday morning. They decided on Monday morning because the night before both tests he needs to stay up a couple of hours late and get up a couple of hours early. With this setup he gets to rest on Sunday.
So, in conclusion. No blood tests are going to be ordered right now, an MRI is scheduled for Saturday, and an EEG is scheduled for Monday. I need to bring Malachi's records from all of his other tests that were done a year and a half ago. I may do that tomorrow, or I just may wait until Monday since I'll need to pass the time during the EEG. Simon is doing much better, the rash is almost completely gone. Dad is sleeping happily next to me, and I'm going to turn in pretty soon.
What a crazy life we live.
1 comment:
Hang in there Sara! I am so glad you at least had a seizure free day. We're pulling for you.
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