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.

24 comments:

Tina said...

What an ingenious idea, trust an 8 year old to come up with it!! These pictures say so much about everything that lies ahead, they give us hope, there are no limits and we should definitely not set any for our children. Beautiful pictures of Zoey, what's wonderful is that she seems to be really enjoying herself, like she's blossoming

Angi said...

Thank you Heather, for all your wonderful words. I think that "drawing" is a great idea for Zoey...and who wouldn't love a pencil sharpened on both sides!!I will keep Christopher in my thoughts and prayers, (my brother with Downs that I loss a number of years ago..his name...Christopher..) Love and Hugs!

Devon said...

I love that your kids are thinking of ways to modify things for Zoey. That is wonderful.

Be careful today, and I hope everything goes well!!!

MoonDog said...

she is just so darling. I love how she has her tongue out in concentration. My brother still does that at age 40! and he doesnt have downs syndrome! so dont anyone tell me thats a downs thing! lol

Kristen's mom said...

Sounds like Christopher and Kristen have a little somthing in common. I too was told it was a rather large IF that Kristen would get back into a remission. After one round of chemo, she was there. She too does things her way. Astounds everyone. Good luck today.

Googsmom said...

OMGoodness, how adorable. The next Picasso I say :) {{{{HUGS}}}}}

Anna said...

What a smart young man you have! I do want to mention there are these cute animals shaped like balls that are a marker or a crayon for toddlers. the plastic animal shape makes it easy for them to grip. I have them on my list for "little G"
I'll be praying for a safe day today.

Sewconsult said...

Zoey's face says it all! She is truly blossoming before our eyes. Sometimes the siblings are the best teachers.
Beckie in Brentwood, TN

mommaof4wife2r said...

that zoey makes my heart smile! she is too much...and look at how great she is coloring. what a girl! prayers for christopher.

Anonymous said...

Let's hear it for JAKE! Hooray, hooray, hooray Jake, what an awesome idea you thought up to help your baby sister, and boy you can tell she LOVES it - a new horizon for the little wonder.
Hope all goes well today at the Hospital - keep us posted as I know you well

Love & hugs to everyone

Aunt Bluebelle

Praying for Christopher too!!

scrappy quilter said...

What a great idea in regards to the pencil. I love that an 8 year old would come up with that idea. Hot diggy doo...cool!!! And our little Miss Zoey looks like she was meant to use that pencil. She is just the cutest!! Hugs

Cammie Heflin said...

What an awesome big brother! He's so thoughtful!

Bea Braun said...

Great thinking Jake!!! And look at Zoey go! What a little love. Hope all went well at UCLA today. Keeping Christopher in our prayers.

My name is Sarah said...

great coloring Zoey. Your brother is an inventor genius:)

Victoria Strong said...

Firstly, LOVE, love, love the ingenuity behind the double pencil ends! And adore those sweet pictures of Zoey. Worried for you about the coming days. I'm betting on a smooth journey! Make that demanding it!!! And when are we going to the zoo? I need me some Zoey :)

Kele said...

How clever of Jake, how wonderful for Zoey! Looking like such a big girl at that bar drawing with her brothers, precious!

ABandCsMom said...

Wow..what a great idea for his little sis! Too cool! I just love seeing Zoey engaging in such activities. She is, without a doubt, one amazing little girl.

Boy would I LOVE to talk to Zoey's Oncologist. I'm so nervous with this platelet disorder. I just hope someday, somewhere, someone can answer questions for me.

Praying all went well with Neurology.

Oh, what about this chocolate cake?? Do share the recipe!!

Anonymous said...

good for you Jake way to have your sisters back ... Zoey is truly amazing!!

just jean said...

The teacher in me loves these pictures!!! She looks so intent!

tish said...

Okay, my friend... look how many comments you received from your previous post... 33!! :)

Hope all went well with my love yesterday. I'm praying that you are always guided to make the best decisions for my love.

Tell Jake he is a wonderful problem solver - that story put a smile on my face.

mandd3 said...

Heather,
Thank you so much for "stopping by". I started the blog as a therapy for me to write out what was in my head, but it has become a different sort of therapy, all because of people like you. Now a confession. I have been by your blog before, but it terrified me. Your blog, your beautiful little fighter Zoey and all the other children you blog about are the real life versions of all the what ifs that creep up on me when I least expect them. I know Tomas' TMD may never come back, he has a 2 in 3 chance of it never coming back, but what if... That is where I usually have to stop reading, until I found Kristen's blog. Surely I can be even half as brave as that sweet girl. Because of her and now your warm welcome I will add another mantra to "Be Still" it is "Be not afraid". Thanks,
Dorothy

Claudia said...

Love you.

sturpin said...

I love that siblings are the best therapists. All of my therapists have told us that:) Way to go big bro!

Peter Olson said...

Jake is a problem solver. Maybe he will become an engineer someday. ;-)
Zoey is so beautiful.
Praying for Christopher