Claire
Roger & Karen Ranly
Hi Everyone,
Just wanted to let you all know that Claire will be having an MRA of her head and neck on Tuesday afternoon, Sept. 4th. They will be checking for any sign of weakened arteries or aneurysms in the brain and carotid and vertebral arteries. She will be sedated for the procedure. We’re hoping and praying for an ‘all clear’ report. They will meet with the doctor on Wednesday to follow up on her last kidney procedure, and hopefully will get the results of Tuesday’s MRA at that appointment also. We’re not sure what the next step will be, if any. Not sure at this point if they will schedule another MRA to check the abdominal arteries, etc., as originally the doctors said she should have a ‘full body’ MRA. I think we’d all feel better if they’d check ALL of her arteries to make sure she doesn’t have aneurysms anywhere else. However, she has to be sedated each time, and that’s hard on her too. We’ve been told that if she would have blockages or aneurysms in her arms or legs, she’d probably be having pain associated with being up and moving around. Claire does have pain in one leg periodically, but usually is worse at night when she’s lying down, so could just be ‘growing pains’.
Claire finished her steroids a week ago today, and this time did fine with going off them. Her BP is coming down pretty significantly. She is still taking 2 BP meds, but the dosage of one of them has been decreased. Hopefully, eventually, she’ll be able to do away with all BP meds. Her heart rate, for some reason is still pretty high, and Kerri and Pat hope to get more insight on that at her appointment next week also. In the meantime, she has started kindergarten and appears to be a normal healthy 6 year old. She has no restrictions on any kind of activity and is signed up to start gymnastics again in a week or two. She hasn’t had a terrible headache in over 6 weeks so we’re hoping it’s because her BP is lower. Kerri said she has gone that long without a headache sometimes in the past, so I guess it’s too early to tell. However, she had been getting them more frequently before her kidney procedure, so we’re hopeful!
I will send an update next week after we have more information. In the meantime, please say some prayers for Claire, so the MRA doesn’t show any additional problems. We remain hopeful that this disease is just confined to her left kidney, and that she’ll be able to live a long, happy, and healthy life!
Thanks,
Karen