Thursday, November 6, 2008

Doing great!

My girl has had 3 great days in a row!!! We see such an improvement in her seizure activity--it is very exciting. We are back down to 2-3 clusters a day. For us, that is really good (considering were were at about 10-12 a couple weeks ago!). SO I am really happy about this today. It has been 4 weeks since the last time we messed with her meds, so I believe it has taken that long for her body to adjust, and now we are seeing Reese "evened-out". We need to decrease the phenobarb again, but I don't want to make things bad again, so I keep giving her "just a few more days.":)
Her ketones are only in the moderate range (need to be high) because I think I have been letting her nurse too long each day. We will have to figure that out, but I have decided to continue nursing her through the cold and flu season. We decided not to vaccinate her, nor flu shot her, so we need to be very careful. I know--I make everyone uncomfortable with the nursing and no vaccines--sorry.:)
So, if you are a friend of ours and you or your children are sick, and we are planning to be with you...please just give me a heads up and a chance to opt out for Reese's sake. This is going to be tough for all of us, but we can't take the risk. Reese probably won't be able to handle respiratory infections like our other children, so just give me a heads up if you are carrying something. Does anyone have any other ideas of how I can gently let people know my concern? I think I am going to put a sign on her stroller that says, "Please do not touch me unless you have washed your hands!" Maybe one on our front door too! I sounding crazy now???:)


  1. I am so glad that she is doing better :) I have been praying for you all so much. I'll be praying that none of you get sick and that God continues to heal Reese. I love you guys!

  2. kerry
    deffentially put that sign on her stroller when you are out there. i have a girlfriend with a very sick baby, he has been on an oxygen tank since birth and also has all kinds of tubes hooked up to his little adorable face that lead back down to the machine under the stroller. she constantly had people move the blanket to get a peek at him. she also had kids run up and remove the blanket and have their little germmy hands on him before she could stop them. i think you are being nice by asking people to wash their hands. how about "back off"! he he he
    jill b

  3. I just stumbled upon your blog... I love the title because God is alive! You have a beautiful family and precious little one (I will say a special prayer for her right now).

    Have a wonderful weekend in Jesus!


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