I woke up this morning feeling a little bit anxious and I think it is because we have several extra appointments, on top of Ruby's normal therapy this week. Today I am taking Charlie to an ENT doc to see if we can get tubes put in his ears. He has had multiple ear infections all summer so his pediatrician referred us to get tubes.
Wednesday Ruby has to have a CAT scan done on her kidneys. Back in January, when we started the ketogenic diet (which we are no longer on) they did an ultrasound on Ruby's kidneys. They saw a small spot on one of her kidneys that they were not too concerned about it, but they wanted us to monitor it. In June we did another ultrasound where they saw the same spot, but it hadn't grown at all, which is a good sign. To be safe, her nephrologist (the kidney doc) wanted to do a CAT scan to find out what exactly the spot is. I am not too worried about it the spot because the doctors don't seem too concerned. I am glad we are going to make sure to find out what it is, but I am dreading having to make Ruby drink contrast, not letting her eat for 12 hours and watching them give her IV sedation...yuck! Hopefully it all goes smoothly.
Thursday, we meet with Ruby's neurologist to get a plan for her treatment. We are on the highest dose of the Kepra (the 3rd med we added a few weeks ago) and we have not seen much difference in her seizures. Right now she is having around 12-15 a day. I think they want us to be at this dose for a few weeks before they say that it is not working. If it doesn't work, then I think we are going to talk about doing another round of ACTH (the steroids). I am dreading steroids, but if that is what we have to do to stop the seizures, then I am game. We will see what he says on Thursday.
Ruby still isn't sleeping well and being tired just makes me feel more overwhelmed. Thankfully I have a husband who often takes the majority of the night shifts. I am reminding myself to take one day at a time; things are a lot more manageable that way. We would appreciate your prayers for peace and sleep for us and wisdom for the doctors. Thanks for all the support you all give us!
2 comments:
Kelly, I know what sleep deprivation can do to a person. It can really bring you down... so I'm praying for some good rest for you and Ruby, and Mark and Charlie too! Also praying that the CAT scan shows nothing serious with the kidney and that this Kepra will make a change in Ruby's seizures soon.
The tubes really do help a lot of kids, so I hope they work wonders for Charlie!
i havent been to your blog for awhile but i'm back now...always praying for you! :)
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