After a long couple of months, our lives have seemed a little bit more normal this weekend. Ruby did have a couple of nights this week where she slept 5-6 hours (instead of 2-3) which was a nice break for Mark and I. She isn't back to her old self yet, but she did seem a little more content the last couple of days. She doesn't look like herself yet either-- she looks more like the Pillsbury dough boy :)-- but, she should stop gaining weight and swelling up after the steroids are done. We have one more week to go on these injections. Next week Friday will be her last shot, if all continues to look good on her EEG tomorrow and we don't see anymore seizures. I am sooo ready to be done with these injections. I am excited to watch Ruby's mood change and hopefully watch her make a few more developmental gains as she feels better. But, it has all been worth it because we are seizure free for over 6 weeks now!!! Her last EEG report even said "Infantile Spasms are in remission!" Yeah! Please thank God with us for no seizures and pray that as she comes off these steroids we don't see a relapse.
Ruby had cranial sacral therapy again last week. She has now seen this new therapist two times and we have really seen a difference already. After she is adjusted she always sleeps great for the next couple of hours and her eye contact is much better (usually she looks right a lot). The adjustments also help her constipation (sorry if that was too much info for some of you :) We are looking forward to having cranial sacral therapy once a week all summer with two different therapists. Ruby will also continue with physical therapy once a week and we might add occupation therapy and/or water therapy, but we want to wait and see how she is going to be off the steroids first. If we change to much at once then we don't know what is working and what is not.
So far, since the seizures have stopped, we haven't seen Ruby do a lot of new things. This is a little discouraging, as of course we hoped we would see a bunch of new activity from her. But, I am trying to take it is stride because I know she has felt miserable for the past 2 months on these injections. And she has had an incredibly tough first year of life. We just started take her to physical therapy again after a month break. She was just too crabby and uncomfortable to be able to handle it (and so was I :) My hope is that when she is steroid and seizure free that we will see more from her. We know it will be a long road, and progress will be slow, but I am very hopeful that we will see progress. I think God has amazing plans for Ruby and that someday she is going to shock everyone. I get tears in my eyes thinking of the day when she will be able to walk up to me and tell me that she loves me. I am waiting on God's timing and I am so pumped to see what He is going to do in my baby's life.
5 comments:
Kelli, your love for Ruby just comes pouring out of your words in this post and I got all teary-eyed just thinking of the possibilities her future holds. God is faithful, and like you, I am sure He has good plans for Ruby's life. I will pray that her next EEG also shows no seizure activity and that she starts perking up after the steroid treatments are through.
I am so glad that Ruby continues to be seizure free and that she is sleeping a little better. The sleep deprivation makes everything else harder. I hope it continues to improve and that once you get to stop the shots Ruby will make some progress again.
Because Maddie is older, it is sometimes a little easier to see just how much the steroids affect her. When she went on Prednisone initially for her IS, she stopped walking altogether and by the time she was done with them, her muscles were so weak that she actually had poor head and neck control. She was a two year old running around before we started them. So I was devastated and worried that the IS had caused that much regression. But within a few weeks of coming off the steroids she was back almost as strong as she was before them. I think it is completely normal to make no improvements whatsoever on steroids. So try not to worry.......changes will come, even if they are slow.
We are so glad that things are going well and that you are finding a bit of normal routine. It is excited to think about how God is going to use Ruby in amazing ways for his glory. :)
Wow, I wonder why I am continued to be surprised by Miss Ruby, but I always am. What an amazing story she has.
Sweet, sweet baby....continuing to pray for your beautiful girl, esp as she weans off the steroids.
Jenny
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