Friday, October 24, 2008

Updates

So Lily Bug is still having some drops and that cluster of myoclonic jerks. She only has that cluster once to twice a day and she smiles afterwards and they don't make her sleepy so I won't be too concerned, but I still don't like them. I don't like the drops either. I really thought she would have had them better under control with Clobazam. But the grand mals are still MIA and thank God for that. Although this isn't the best seizure control, it is good and maybe the best we will ever get so we'll just take it and try to relax.
Isn't it odd how you pray for one thing to happen and it does and then you want more. I guess we are all greedy in some ways. Please tell me I am not the only one. I just want my daughter to live a day seizure free. I feel like we are close and to be so close yet so far, it is a bit frustrating.
On a positive note, Lily had a cold that started about two weeks ago and I can say that her nose is not running anymore. For those of us who are close to Lily knows that when a cold comes on we are prepared for at least a month of nose wiping and the cold came and went this time. That is amazing for her and saves so many tears. Two things Lily can see coming a mile away, a brush and a tissue. She is not a fan of either!
We've got a busy weekend ahead of us, two birthday parties on Sat, the State Fair on Sunday and a birthday party for Grandpa Ted, Aunt Jenn, Uncle Bryan and cousin Cody all on Sunday night. October is a very busy month for our family. It is more expensive than Christmas!

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