Wednesday, May 14, 2008

With a Heavy Heart

The day has seemed never ending and it is only 4:20pm. For those of you who did not know we were at Children's today for and EEG and neurology appointment due to Zoey's recurrence of seizures. This was her 6th EEG in about 31/2 months. Too many for a child who is only 14 months old. Actually everything up until this point has been way to much to ask of a baby her age. Today was no different. I absolutely hate to see her cry and cry and cry. I also feel there has been enough of that too in the last year. Too many tears from all of us. From her. The appointment unfortunately yielded a very poor prognosis for Zoey and her seizure battle. And a battle it has been. Just a week and a half ago we had a clean EEG. Today, major chaotic brain pattern once again. 10 weeks of two front line treatments, Vigabatrin and ACTH and both have been deemed a failure. Return of the Hypsarrythmia, the cognitive damaging brain waves, is a devastation. We had such hope. Although Zoey possesses two possible reasons for her Infantile Spasms, Down syndrome and the stroke, the stroke is most likely the culprit. She suffered a Middle Cerebral Artery Infarction inutero, a major stroke, that has left almost 2/3 of her right hemisphere irreversibly damaged. At this point the direction we are being encouraged to pursue would be a Total Right Hemispherectomy. The removal of half of her brain. I know, unreal to say the least. I cannot even believe I wrote those words. Mind boggling. We are trying to process this the best we can right now. There are literally a million things going through all of our heads. The biggest thing, what is in Zoey's best interest? I wish that answer would magically be placed before us because we are at a total and complete loss. Why this child has had to endure any of this and ALL of this, completely escapes me. I will never understand it. Ever. At this point we can do little else but pray. Pray that God has a bigger plan that we cannot see or envision right now. This child is the sweetest, most gentle little girl that you would ever meet. She is the definition of pure innocence. Her spirit carries us through our days and her strength allows us to tell ourselves that we can do this. My faith is weak. My spirit is broken. My ability to see the fairness is clouded. I have promised from the beginning that I will do all I can to see that Zoey is given the opportunity to lead the life she deserves. Not by definition of society or medical science. She defies all of that. Her mere existence defies all of that. Pray for her. Pray for her future. I am sure she will far surpass all expectations and as her Mother I will continue to fight for her with the same strength and courage that she has shown us thus far. I may take a little break from posting for awhile. Just to sort things out a bit. When I began this blog over two months ago I had no idea the life it would take on, the friends I have made and the gifts others journey's would bring to me. I have been amazed by the human spirit. The generosity of strangers and the love of my family and friends. Daily I receive emails and phone calls from families offering their wisdom, support and love. Many of which I have never even met, I am humbled. I am thankful. I am blessed. Till next time, Heather

10 comments:

Mommy to those Special Ks said...

Oh Heather :(. I'm so sorry. It's NOT fair. I will never understand why our kids have to endure so much. I know you will make the absolute BEST decision for Zoey... and just know that SHE knows that too. Please know you are in our prayers as you make the decisions for Zoey's future... and we're here to listen and offer hugs, when you need them. Zoey is a beautiful miracle and I feel so blessed to know her.
Hang in there.

Reagan Leigh said...

I'm so sorry. That's all I can say. I'll pray for wisdom and for strength for you all. I know how tough all of this must be for your family.
Tera

Kelly said...

Oh Heather,
I wish that there was something....please do not stop updating us with everything Zoey... I waited all day for a post. I will continue to pray.

Carey said...

Heather, I am so sorry. You're right, it's not fair. I just don't understand. I have witnessed miracles though, just today, we celebrated a life saved of cancer. Keep your faith honey. Much love coming your way.
Carey and Chelsea

Shelby said...

Heather,
I don't know what to say. I am at a loss for words. I am hurting so badly for you and I want to take this from you. I will pray, and pray, and pray. Thats all I know how to do to help. I love you so much and I know you will remain strong, even in your weakest moments. That little Zoey, she amazes me and inspires me. I know she does the same for your family. You know how I like to hear your voice during the week, but I will give you space, and talk to you when you are ready. Love ya, shelby

Ian Marrey said...

I wish there was something that could be said to make you feel better, I fear there is not.

Your strength, determination and love as witnessed on this blog is an inspiration.

You, Zoey and your family will be in my thoughts

Denise said...

Zoey is so beautiful, all your pictures capture how sweet she is. I too question WHY many times, even if you have to take life minute by minute do what YOU need to do, its so hard to understand... Extra prayers are headed your way!!!
www.caringbridge.org/in/sydneylynne

just jean said...

What heartache. I can only add my thoughts and prayers with others who have come to love Zoey. We just cannot understand the unfairness of this all. I guess we are not meant to understand. I hope you can find comfort and strength in knowing that every decision, every trip into LA, every new strategy or medicine, everyday that you get out of bed with renewed hope, every kiss and hug has been delivered with the intention of doing what is best for Zoey. She knows love. Some children are born without physical challenges, but never know the gift of unconditional love. Zoey knows. I can understand your feelings about the blog and I respect them. However, I'm hoping that you could occasionally let us know how she is doing...how YOU are doing. We have come to love Zoey and care about you as well.
just jean

Dawson said...

There is an entire community of people who have fallen in love with Zoey. None of us can or ever will be able to understand the why's or how's of something of this magnitued. One day though.. One day it will all be laid out before us to see. God truly does work in strange and mighty ways and the way you handle what you are having to deal with is nothing short of awesome. We will not stop praying for Zoey and for your family.

Pam said...

Oh my goodness, Heather, I am so sorry. You are right it just isn't fair. It's not, and I don't have any other words other than that.

We are constantly praying for you, and every day we look at that beautiful little girl on our fridge to remind us that we are blessed to know such incredible people.

Please know that we are here for you. I tried to take a break from blogging a while back while I sorted through things, and it ended up making me crazy because I couldn't put my thoughts straight. For me blogging is theraputic.

I know that you will make the best decisions for Zoey. You love her so much, and she couldn't have a better family by her side. You all are simply amazing.

We love you guys, and are always praying.

((HUGS))

Pam and Rhett