This morning we saw Ruby's neurologist again. There wasn't much new to discuss because we have just started the diet. So far, he thinks things look fairly good. Obviously we want the seizures to stop, but at least Ruby is much more alert and awake. She is smiling and moving her hands and arms a lot more. It is so much fun to watch her do new things; even if they are very small steps, at least we are moving forward in development! We are weaning her off of a second seizure med right now (the klonopin or clonazepam) and she is handling that well. I am excited to get her off of these meds because I think each one makes her more sedated. If the diet works and does slow down or stop her seizures, then in a couple of months we would hope to wean the last seizure med, Vigabatrin. That one has been the most effective for Ruby, so I am okay with her being on it for at least a couple more months.
Next week we meet with Ruby's dietitian to discuss how things have gone with the diet. We have tried to keep a careful record of how many seizures we see each day, where her ketone levels are in the morning and at night and how hydrated she is. Then, we can go over all this information and she can adjust the diet as she needs to. Some kids get immediate seizure control on this diet, but many kids have to go through weeks or months of adjusting the diet before they see a big difference in their seizures. After a full week of being on the diet, I am encouraged that it is going to help Ruby, but it just might take time.
I went to my doctor this afternoon also. I am in week 36 and things are looking good. The baby seems healthy and I think it would be okay to go into labor at anytime, although another week or two would be best for him. It is weird to know that anytime in the next 4 weeks (or maybe longer :) we will be adding to our family. I am very ready to meet him, but it often seems very surreal that it is actually going to happen sometime soon. Crazy!
4 comments:
Kelli and Mark, How exciting that you are getting to watch more and more of Ruby's personality come out as the drugs are removed one by one. Praise God for little bits of progress in development. :)
It would be so awesome if that diet were to help Ruby and she could be off those meds. I'm happy for you that baby #2 is coming soon. I know you will be busy, God will give you the grace. :)
I am very excited for you guys and the little boy too! It will be fun to hear about him! It will be a big change/adjustment but God will help you through. It's amazing how maternal instincts kick in and even though you're clueless the amount of love you give them is just what they need. Don't be afraid to ask for help!
I will definitely be praying for you guys the next couple of weeks. Are your hospital bags packed? I'll be praying for a nice labor (can't get much worse than mine!) and of course an extremely healthy baby!
We think and pray for Ruby every day! You guys are always in my mind. I just keep thinking that if God wouldn't have placed her in your arms, where would she be? She is such a blessing.
Hey Guys! You continue to be in our prayers, and I really appreciate the updates via the blog. Keep them coming! We're excited for that little man to enter the world as well. The pictures Pac took are AWESOME too! What a treasure! Hopefully we'll chat again soon.
~Chad and Kim
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