Everything went fairly well today at our appointments. First we had another EEG done and then we met with the neurologist to discuss the MRI, EEG and Ruby's medicines.
The bad news first-- We were praying for a clear MRI, but unfortunately the doctor saw some scarring in the white matter in Ruby's brain. This could have been caused by an infection she had earlier or a lack of oxygen she experienced. We are thinking this damage probably happened when she was really sick in Ethiopia in August. This is frustrating for me because if she had been in the States by then a lot of this could have been prevented. He also saw signs that at one time Ruby had bleeding on her brain that could have been caused by some kind of trauma or infection also. He wasn't too worried about this as he said the spots were small and usually the brain can absorb this.
The good news-- Ruby's EEG looked better this time. The doctor said he didn't see as many spasm/seizure patterns and her brain waves are looking a little more normal. We have not seen as much seizure activity since we started the 3rd med so this is why the EEG is calming down.
Where do we go from here-- Really none of what we found out today changes Ruby's prognosis a lot. Because of the scarring on Ruby's brain, we know she will have some type of delays, but we have no idea how severe they will be. Already she is several months behind developmentally; some of this could be due to time in the hospital and orphanage, but some of it is also probably due to her brain injury. Kids that have infantile spasms fall anywhere on a spectrum from only having small delays to being severely handicapped.
We are increasing the dosage of the 3rd med tomorrow; since is seems to be working we are going to try to totally get rid of the seizures. In 2 weeks we go back for another EEG to see if Ruby's brainwaves have calmed down even more. Once she is seizure free and she has a couple good EEGs then we can talk about weaning Ruby off some of the medication. She will probably have to stay on some meds for at least 6 months, maybe longer. In 4 weeks we will go back to the neurologist for a consult; hopefully the seizures have completely stopped by then.
Mark and I are doing fairly well. We were angry, frustrated and sad at first and those emotions still come and go, but we are now coming to grips with what we are dealing with. We are also trying to focus on the positive and keep hoping that Ruby will continue to make improvements in her development.
Thanks again for your prayers. I think we will continue to need them, but we have felt God's peace through this journey.
8 comments:
Thank you so much for the update. I am glad to hear that the new med seems to be working. I am amazed at your strength and your faith and we will continue to keep baby Ruby in our thoughts and prayers.
hey guys,
glad that you received some great news. it has to be so hard not to get frustrated knowing some of it could have been prevented if they had let you get her sooner... hang in there. still praying for you...
It sounds like you've got some very positive news. I'm so glad to hear that things may be getting better. You two must be just glad she's not in ET anymore! I know all that love and prayer will do miracles. I speak from experience!
It sounds like you are moving in the right direction... be encouraged! I think that with small amt of scarring, her future is very bright. Let's pray that the third med does its job. ((HUGS))
I have been following along and cannot imagine how hard this must be for you all. God is in control and He gave you Ruby...because He has confidence that with His help, you two are the best parents for this beautiful girl. Keep praying as we are!
God doesn't make mistakes and He knew when he chose you guys to be her parents you would be the best. We will keep praying!
Amber and Carla
praying.....
love and hugs,
the Klein's
Hi,
I have been following your story with Ruby. Your family has been in my thought and prayers..
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