There is not a lot of new information to post. Ruby is still having seizures everyday, even though we increased her steroids on Saturday. The seizures are very short, but we still see them. I don't think we will change anything until the doctor sees her next EEG, which we have on Thursday morning. If that doesn't show improvement, then we may have to try something else-- maybe the steroid shots. I am really sick of trying med after med after med because as soon as her body gets used to one, then we switch things on her. This affects her sleeping and eating and it is hard to figure out a good routine for her when we keep changing things. On the other hand though, I want to find a combo of meds that completely stops the seizures, so I know this is for the best.
On a positive note, Ruby seems to continue to make small developmental improvements. She is still smiling (I have a great picture to post soon :) and she is holding some of her own weight when I stand her up on her feet. She still doesn't like tummy time, but she can tolerate it a little better and she sometimes pushes up on her arms enough to tip herself over. A physical therapist and a occupational therapist from Early On came over yesterday to evaluate her and see what kind of services she qualifies for. They were great and I think they can really help Ruby. I am hoping that one of them will be able to come once a week. It is so nice that they do home visits because when baby #2 comes around it is going to be hard to get out of the house :)It is also nice to have people teaching me what I can do to help Ruby the most.
We are thanking God that Ruby is smiling and making some small gains, but we would appreciate it if you could continue to pray that God would stop these seizures totally! We know He can and we know prayer is powerful. Please ask Him for a great EEG on Thursday and no more seizures!! We appreciate all of you!
8 comments:
Can't wait to see the new picture of Ruby! I will continue to pray that you have good results soon. I can only imagine how frustrating it would be to be switching meds all the time and still looking for the ones that will do the trick.
so sorry to hear that these meds are still not the right combination. hopefully they can find the right "mix" soon and ruby will really start to shine. she is such a beautiful girl. cant wait to see the smile. :) thinking of you all...
I'm praying for her that her seizures will be totally gone and that she (and you) can start getting into a routine. I'll be checking back to see that cute pic!
What a precious little face she has. Praying her situation improves very soon. Caroline didn't like tummy time either -- she would just mush her face in the blanket til I thought she couldn't breathe, then I'd pick her up. But they get strong anyway.
Our prayers are with you! Glad to hear about the positive improvements with Ruby! She is a doll! Love you guys!
I hope the next combination of meds works for Ruby. She's so beautiful.
I just wanted to throw out the ketogenic diet which is an alternative approach to stopping seizures. I have no idea if Ruby would be a candidate or not but the diet was tranformative for my cousin.
Thanks for sharing your story. You are in our family's prayers.
We will pray for this, Kelli!!!
Praying for sweet Ruby!
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