Sunday, February 7, 2010
And We Move Forward ....
First, I want you to go back and look at these two pictures because I want to point out something to you.Zoey loves sitting up at the counter.Especially when the boys are up there eating or doing homework or in this case drawing.Jake asked Zoey if she wanted to draw.To which she promptly nodded her head yes.Jake gave her a piece of paper and handed her a colored pencil.Picture one.Zoey kept turning it upside down in her hand and I would keep switching it the right way so she could draw.After about 5 or 6 times of this Jake says,I have an idea mom... he takes the pencil,sharpens the other side so both sides are now sharpened and voila.. my 8 year old has just adapted an item to make something in Zoey's life a little easier.Picture two.And,by the way....have I told you lately how amazing I think my children are?
This past week was seriously mentally hard to press through.But I did.And here we are at Sunday,already.Had a great Super Bowl Sunday.Love the Saints win... mainly because Pablo's momma is a huge fan and was there to see the win in person...I texted her like 4 times,she had to be on cloud nine seeing she is a homegrown New Orleans girl.Jess,Matt,Taylor and our "every Sunday guest",Amanda,were all here.We had homemade guacamole with way too many chips,yummy Barefoot Contessa Macaroni and Cheese,Turkey Meatball subs,followed by Jessica's newest find and totally sinful,chocolate cake.I better get running tomorrow...
Actually make that Tuesday.Tomorrow is busy from beginning to end.I suppose I could get up extra early and go but something tells me that my warm cozy bed will be the bigger draw.The majority of our day will be spent at UCLA.Or in the case of LA traffic,traveling to AND from UCLA.Zoey has a big neurology appointment with Dr.Shields.Last time she saw him,which was in June after her last round,he was contemplating taking her off her Topamax.He feels she has a 50-50 chance of either remaining seizure free or well,I suppose not remaining seizure free,if we take her off.He gave me a pass last time,as my heart at that time could never have withstood the what if's.But honestly,I don't think I am anymore prepared to try weaning her now either.I would rather see her outgrow the therapeutic dose she is on now,then to play the 50-50 card.At the end of May we will be coming up on 2 years of seizure freedom,all because of Topamax,a drug that no one thought would work... I say,if it's not broken,don't fix it.But that's me.We'll see what the big guy says today.
Everyone here is good.Really good.Happy and healthy and I swear,I had a ton to share before this last week crashed down upon me but at this moment I am coming up empty.
All except this:Our little buddy Christopher headed to CHLA tonight.His oncologist,which happens to be Zoey's as well and who happens to be an expert on leukemia in children with Down syndrome,has come up with a plan.A plan which entails Christopher needing to get back into remission and getting him to the Bone Marrow Transplant Unit.And anyone,who knows anything about leukemia,knows what a tall order that can be.So I will keep you all posted on Christopher's journey and if you all would please keep sweet Christopher and his family in your thoughts and prayers.