We saw Dr. B this week. We are now weaning the Klonapin...my choice. He was reluctant and said, "Well, that is reasonable but we will probably see more seizures." Hmmmm...not what I want to hear but we shall see. I missed a dose last week and she was so bright, happy, talkative. It was confirmation that I hate Klonapin. So we are moving forward! She will now be on Lamictal and Zonisamide. Yea!!! Down to 2...can't remember the last time we were on only two. But that has been my goal for awhile. The weaning process is no fun, and he said the wean for Klonapin is similar to that of Phenobarb. WE had a really hard time with that wean--really awful--so please pray for God's hand of protection over her as we get it out of her system.
Reese did have 2 seizures yesterday, which is now unusual. We had a crazy busy day, so I wonder if I pushed her too far. I have had her out and about a lot lately just because of the nature of our lives. Everyone says the same thing about her..."She is getting so big!" Why is that all anyone has to say?:) I am not complaining, I just don't want to hear it anymore.LOL First of all, she is NOT getting big. She hasn't grown in 4 months! She is in the 5th percentile and dropping. It is a problem! And second...she has a lot more wonderful qualities than just being big.:) I guess people don't know what else to say because they are wondering why this huge "baby" is laying in a stroller. I get it!!LOL
Doc and I had the Vigabatrin conversation again. I know he wants us to try it, but he is very respectful of our decision-making process. He said, "I have known you for a long time and I know how important her vision is to you." I was laughing inside thinking, we have really only known each other for 2 years, but you are right, it feels like a long time! Especially with all the phone calls I have bombarded him with--maybe a lifetime worth of calls?? So I said, "So are you saying you don't think we should use Vigab?" He said, "No, not at all. You just need to weigh what is more important to you--her vision or her seizure control. I vote for seizure control." Well of course he does, he is an epileptologist. It sounds simple and to some, like a no-brainer. But we communicate with Reese through her eyes. She does not speak, she does not sign, but she does light up when she looks at us. She sees our faces and she raises her brows, scrunches her nose, and smiles. It is the BEST! I can't imagine losing that...so no, it is not an easy decision for me. Not that she will lose her vision if she takes Vigab, but it is a possible side effect. Very difficult, because the idea of Reese without seizures is very exciting to me! I told the doc that I feel guilty for not trying it sooner, if it will in fact be her miracle drug, and he squelched that real quick. "No way, you can not live like that." That was sweet.:)
So...that is the latest...and God is SO faithful. He keeps answering my prayers in ways I could not imagine. SO good to us!! He is my strength and my song...I will trust and not be afraid.
My sweet friend Rita sent me this verse yesterday:
In that day you will say:
I will praise you, O Lord.
Although you were angry with me, your anger has turned away and you have comforted me. Surely God is my salvation: I will trust and not be afraid. The LORD, the LORD, is my strength and my song; he has become my salvation. With joy you will draw water from the wells of salvation. In that day you will say: Give thanks to the LORD, call on his name; make known among the nations what he has done, and proclaim that his name is exalted. Sing to the LORD, for he has done glorious things; let this be known to all the world. Shout aloud and sing for joy, people of Zion, for great is the Holy One of Israel among you.