I am sorry it took me a few days to post about Ruby's appointment! We have been having a great time with Mark's family; they were here from MN and SD for the weekend and we stayed very busy. I will post about our fun weekend, but for now, here are a few thoughts about our neuro appointment.....
-We didn't learn much that was new, but it was good to confirm things with the doctor and be able to ask him questions about Ruby.
-She doesn't have full blown Lennox Gastuat syndrome yet, but it looks like we are heading down that road
-We were reminded that this syndrome is very hard to control and success for her would be to have a 50% reduction in seizures. Sadly, it doesn't look promising that she will ever be seizure free.
-The medication (Zonegran) we have her on now seems to be making a small dent in her seizures. We will keep increasing that for another week and a half and then we will chat again with the doctor to see where we are at. If she has great results, we will stop there or if she is still having a lot of seizures we could add a second med or try the ketogenic diet again.
-The doctor thought her structure was looking better, which is encouraging to us that all the hours of ABR we are doing are making a difference.
Even though none of this information was really new, it was still a little hard to hear. Yet, there is not much we can do. So, we cry a little and then we move on and do what we can to keep fighting these stupid seizures and love on our baby girl. We are determined to not mourn what we don't know and we keep trying to enjoy each day and not think too far into the future. There are hard minutes, hours, days..etc but God is good and has given us a lot of peace about the road we are on with Ruby. This new diagnosis doesn't change the fact that we have a beautiful, smiley little girl that needs to be changed, fed and cuddled, so that is what we focus on. Thanks for your continued prayers.
3 comments:
It sounds like you have the best attitude possible in your situation. I am sorry that the news did not bring new hope for Ruby's future, but I am glad you have our Father who can give you hope and blessings as you parent your sweet girl. ((HUGS))
"We cry a little and then we move on - we try to enjoy each day and not think too far into the future". I can't tell you how much we understand your words! You summed it up perfectly. Even though our situations are so different, our God is the same and that is where our hope comes from.
It was great to be at your home and be a first hand witness to your 'nuts' schedule and your dedication to our beautiful grandkids! We had a ball!! Ruby is just a joy and Charlie...well... we just couldn't believe how smart and grown-up he is!! Grandma handled the trip so well and when we got home at 7, she got in her own car and drove to Sioux Center! What a trooper!! We love you all and all we can do is pray for peace for each day, which we do, and thank our faithful Father for the strength to face each trial, because that is the only way to go on. Once again, thanks for the beds, the food and the welcoming hospitality!
Love you all and pray daily...Mom
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