Thursday, June 30, 2011

Neurology appointment and a busy week filled with joy and some heavy hearted sorrow ...




Something about these pictures made me smile and brought me peace when I looked at them.Maybe a reminder of how lucky I am.How lucky she is.I needed that reminder tonight.

 Monday we headed to UCLA for Zoey's 6 month neurology appointment.Dr.Shields is supposedly retired,but not really,from what I could tell.Still seeing patients and for that,we are grateful.He has been a Godsend to us.To Zoey.We chatted a bit and finally circled to what I knew we would,which was the topic of weaning her off her medication.I knew it was coming but the thought of it makes me a little nauseous,I must say.As he sees it,we have a 50/50 chance here.Upon explanation of this percentage,it is as simple and as complicated as this:We take her off and it is split down the middle whether her seizures will or will not return.Crap shoot really.What he is fairly certain of though,is that at this point we would not see Infantile Spasms,which is what she originally started with but rather Tonic seizures,which is what we last saw.So,after a brief discussion we have decided to stay put once again.In all honesty,I cannot ever imagine taking her off.That percentage will never change either,so,end result, status quo for another 6 months as he didn't actually feel strongly one way or another and he left it up to me.He did tell me an interesting tid bit of information however, about a study he did way back when, with Vigabatrin.At that time there was an agreement made by him and his partner in the study and the pharmaceutical company and if I understood it properly,10% of the sales from Vigabatrin goes directly to the Eplilepsy Foundation.Which equates to 1 million dollars a year.Not too shabby I'd say and much needed.


This picture of Charlotte cracks me up and I really needed that tonight as well.The outfit was her own original design by the way!

In other news,the week ahead is extremely busy. We have 2 weddings to attend before Tuesday.Mark's birthday on Sunday.A baby shower on Sunday.Matt's birthday on Wednesday and Charlotte's birthday next Sunday.All happy celebrations though and we sure will need them because sprinkled amongst the joyful busy we have a memorial service to attend on Tuesday.A service for a precious little girl named Cecilia,who celebrated her 12th birthday in April.Sometime Tuesday night she passed away in her sleep and was ushered into Heaven,I am sure,by her older brother,Isaiah, who passed away 12 years ago.We actually met their parents, when we lived across the street from them before they had children and we were just a young family of 5. Both Isaiah and Cecilia had unspecified genetic disorders but those disorders do not, nor will they ever, define who they are.They are desperately loved children,siblings,grandchildren,niece and nephew and friends, to many.Cecelia is the princess of the family and had a smile that lit up a room.Zoey was so drawn to her,in a way I could never describe and tonight ,when I spoke to her mom,she said in her mind she just keeps seeing Zoey blowing kisses to Cecelia, over and over and over again while at church.Two special little friends.Our hearts are heavy tonight for a family who must journey down a road,again,that no parent should ever have to.Not once and certainly not twice.And they know just what is in store for them and for that,my heart breaks.


Cory said...

I am glad to hear that all is "status quo" for precious Zoey! She is beautiful in the surf. :) And I am so sorry for the loss that sweet family has had to endure. I can't imagine. How heartbreaking. :(

Rochelle said...

You guys are always busy. I am thankful for your neurologist and that things are still the same (although it would be nice to have no meds AND no seizures) will keep praying for that.
Praying also for Cecelia's family as they grieve.

Love the pics of Zoey and Charlotte, had to laugh out loud at Charlotte's outfit very creative!

Angi said...

Thinking of you and sending hugs.

Becca said...

I'm so sorry to hear about Cecilia, and my heart goes out to her family and friends today. Can't even imagine...

Do Zoey's meds have any real negative side effects? Are there any reasons why you would want to wean her off of them sooner than later, or does staying put not post any risks? Glad it's keeping her stable, though.

Love, love, love the beach photos -Zoey could not be any more gorgeous!!! Samantha used to have that exact same bathing suit, too. We're off to the beach this morning. Can't wait!

Oh, and Charlotte has one wicked dress sense!

Bea Braun said...

Oh Heather my heart is just breaking for them.

The VW's said...

I can't imagine having to lose 2 children, let alone one! May this family be given peace, strength and grace!

Love the pictures of your sweeties!

Hope your busy week is filled with happiness and blessing! Hugs!!!

Elizabeth said...

I am so sorry to hear of this family's loss -- and your own. No words, here -- just love to you.

Kristin said...

I hate hard decisions. Glad the doctor let the mommy intuition play a part in the decision. Sorry to hear about Cecelia. We too, lost a dear friend yesterday to a 3+ yr battle with cancer. She knitted both my kiddos baby blankets. So sad. Life just isn't always fair.

Melissa said...

I'm so sorry to hear of Cecilla's passing and will keep her family in my prayers.

I love Charlotte's outfit!

There is another blog friend who recently started weaning her son off his seizure meds, but I don't remember any further news, so hopefully it's going well for them. My point in that random comment was that I remember her being VERY nervous about trying to wean him too.

Love all the beach photos. They make me smile too!

Lacey said...

My heart breaks for this family. Not only do i dread that i could lose one, i cant imagine two. I have a couple of friends that are traveling down that same road.
Zoey looks gorgeous, I cant wait for a snuggle from that girl. I need to call, but my phone is a little crazy right now. I'm pretty open all week, we may head back this way the end of the week before we go, to fill out papers to try and get a house rented.

Laura Gilmour said...

I love the beach pictures. That one of Zoey sitting in the shallow water reminds me of doing the same when I was her age. I used to love to sit there and let the water rush in around me. Thank you for the nice comments on my blog.

Cole said...

Oh my heart breaks for Cecilia's family! I wish no families had to bear that. I don't know how you do bear it.

I'm so glad your neurologist stays with you- liking a dr- you hate to lose them. I'm glad she's status quo- I would be in no hurry to wean either. seizures are so scary.

Love the pix of the girls! Charlotte is Abby's middle name (named after my mother)


Anonymous said...

love the photos of the little ones. Charlotte's choice of design is a hoot! (especially the shoes)

So sorry for your former neighbors, can't even think what level their grief must be.

Nice that doctor listens to family in major decisions. He is certainly a keeper.

Sounds like a busy week ahead (but, aren't they all) This one up a couple of notches.


Shelly Turpin said...

Sorry, so sorry for Cecelia's family.

I love, love the happy Zoey picture on the beach!

Jeana said...

Those pics of your girls made me smile too! Part of me just wants to get in the car and drive to California to spend the day with you guys at the beach so Kaelyn can finally meet Zoey and her mama. So sorry about the dear family that lost their children, that breaks my heart, my prayers will be with them.


I went through this decision dilemma with The baby who hasn't had seizures since 2007 but you know with her extensive brain damage will. I finally did the research on long term Phenobarbital usage and agreed with the neurologist. We are in a very loooong weaning process with the Phenobarb. It will take over 6 months. But I have to say that other than the first 0.5ml reduction where she was like a squirrel on crack she has done perfectly with the subsequent reductions. It's such a difficult decision. I hear you.