Both of my kids sleep through the night for the first time ever last night!!! Ruby slept for 10 hours straight and Charlie slept for 8 hours. I woke up at 2:30 and didn't hear anyone crying so I went right back to sleep; I didn't have to feed Charlie until 5:30. What a blessing it was to sleep for 8 hours!!
We went to meet with our neurologist yesterday morning. We had so many questions about Ruby's treatment and about the ACTH injections that he squeezed us in and talked to us for an hour. I am sure he was late for his other patients, but I really appreciated him talking to us and answering all of our questions. By the end of the conversation, both Mark and I felt at peace about continuing the ACTH shots, even with Ruby's CMV. The neuro and infectious disease doctor do not believe that Ruby's CMV is congenital (meaning she got it inutero) which was a relief to hear. If it was congenital, we may have other problems like loss of hearing and vision later in life. The CMV is inactive and the chances of activating the virus are very low. So, I am back to giving her daily injections, which I hate, but if it helps slow her seizures then I can put up with it.
I have felt at peace these last couple of days; God is good and I know He has a plan for His little Ruby. Thank you for your prayers; we feel very supported.
3 comments:
1) WOOHOO!! So happy you were able to get a wonderful nights sleep!! Praying that continues to occur!!!
2) WOOHOO!! So glad to hear that the doctor took the time to listen to you, hear you and offer some sound ideas!!!! Praying that the shots, though hard for you :(, will be a blessing for Ruby!
3) LOTS of hugs to you!!!!
Yes, God is Good!!!
awesome!!! so glad to hear that you are getting some much needed rest. it's amazing how much better you will feel once that happens on a consistent basis...
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