Ruby and Mark met with the neurologist yesterday for a routine visit. Even though her seizures are as controlled as they have ever been, she still has several small seizures a day. We weren't sure if we should continue to fight these little eye roll seizures or if we just had to deal with them. Basically the neuro said that Ruby is doing as well as we can expect with her diagnosis (Infantile Spasms that have changed now into Lennox-Gastaut syndrome). He doesn't think that we will get much better seizure control then we have, even though she is still having them every day and even though the background pattern on her EEG hasn't improved much. This might be as good as it gets.
I knew in my heart this was probably true, but it is still hard to hear it from a professional. It once again makes me mourn the future and wish for a day when her seizures would stop and she would look me right in the eyes and say, "hi mom!"
For now though, that doesn't look possible on this side of heaven. So, I can grieve for a moment but then all I can do is keep loving on her and fighting for her. We pray she will be happy and content and we are hopeful that she will make some gains on her own time. And at the end of the day, we thank God for the little things in life that mean so much and for the peace that He brings.
Ruby Fendisha-- you are a blessing!
Little update since I first wrote this post-- Last night we increased Ruby's meds slightly because the neuro suggested it. This morning she had a tonic seizure like the one that landed her in the ER a few months ago. Thankfully we had diastat at home to give her and after about 9 minutes the seizure stopped (instead of 90+ min. like last time). She seemed to be doing okay after she stopped seizing, so we didn't bring her to the ER, but it was still very scary. We kept her home from school and now she is sound asleep, recovering. It is terrifying to watch her go through that, but thankfully this time she came out okay.
Once again, I hate seizures!
My little sweetheart LOVES her Daddy...
5 comments:
Aww Kelli.. my heart hurts for you guys and for Ruby; what a day that will be in Heaven when she is completely free from seizures! So glad we have that to look forward to.. especially when we face hard days here and now.
I am welling up with tears. So many of us prayed and waited with you to get Miss Ruby home to the TenHaken household, and it just breaks my heart that she can't say Hi Mom! to you, her amazing mom. But I know that she is feeling it, she knows the love you have for her and she couldn't be in any better hands. Ruby is a pure blessing from the Lord and those darn seizures need to leave her alone!
So sorry, Kelli. You know how much I care and how much I pray. I know God is in control but someday, I really do want Him to tell me why Ruby's journey needed to be so difficult.
Loving on all of you, Mom
I'm hating seizures with you over here! You guys are such amazing parents, and I continue to marvel at your patience and perspective in light of all that comes your way. Your kids are so blessed to have you!!
I'm sorry Kelli and Mark for Ruby's seizure this week. Our daughter had a tonic-clonic last night and I hate seizures too! I don't understand why our daughter or yours have these seizure disorders but I am continually praying that God would use this to grow us closer to Him (He has already!) and to glorify Himself. The neat thing is, both bringing glory to himself and growing us through trials is promised in His Word. I Peter 1 has been a real encouragement to me lately. Praying for you both and for the safe and delayed ( :) ) birth of your new baby, and for Ruby.
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