Saturday, February 7, 2009

What to Say ?

I've titled the blog, "what to say?" because at the moment, I really don't know what to say. We got the results of Eden's MRI this week. To back up a little, we had the MRI done to recheck her spine from the surgery she had done in October (to release the tethered cord).  The spine looked great - everything healed nicely. I had also asked Dr. Fuchs at her last appointment if we could do an MRI of her brain as well since there was so much  controversy in her medical records of whether or not she did in fact have Dandy Walker Syndrome. Some of her records said yes, and then some said no (one of the benefits of working at her pedi's office - I get to see the records Duke sends first hand!) With her developemental delays too, I have wondered if an MRI would give us any light as to why she has had them - we've gotten so many theories as to why she has delays. Well, Dr. Fuchs siad it was a good idea to have the MRI done, so he agreed.  Well, the MRI showed that she does in fact have hydrocephalus (extra fluid in her ventricles in the brain). We (and Dr. Fuchs) were quite shocked as most kids with hydrocephalus show clinical symptoms such as seizures, enlarged head circumference, downward gazing eyes, etc - none of which Eden shows. This could explain why she has been delayed at meeting milestones and things *could* get better after the surgery she is going to need. I say *could* because doctors of course can't promise anything - especially when it comes to the brain.

So, on Feb 27th, Eden will go back to Duke to have a procedure done called  "cyst fenestration" near her 4th ventricle.  We have the other option of going straight to a shunt placement (some of you may remember this from when I was preggo - this was the surgery we had planned to have immediately after birth). A shunt will be a little easier, but it is a life-long thing - and could require multiple other surgeries just to maintain it. The hopes with this cyst fenestration is a "one time fix" - that is if it is successful. If its not successful in keeping the fluid at a good level, then they will eventually have to do a shunt. We are opting for the lengthier procedure in hopes that we can avoid a shunt and also at the recommendation on Dr. Fuchs. E will be at Duke for 5-7 days - with at least one night in the PICU. 

As I've been trying to process this over the past few days, two verses keep coming to my mind. The first is Psalm 94:19 which says, "When the cares of my heart are many, Your consolations cheer my soul." I know that only the Word of God gives me comfort right now and is the only thing in which I can truly trust. The other is Colossians 4:2-4 "Continue steadfastly in prayer, being watchful in it with thanksgiving. at the same time, pray also for us, that God may open to us a door for the Word, to declare the mystery of Christ, on account of which I am in prison = that I may make it clear, which is how I ought to speak."  In God's sweet timing, this past Sunday our pastor spoke on this verse as our church's focus this year: prayer and our part in God's mission. He challenged us to make this year the year that we are devoted to prayer above all other things. I see God's challenge to me already in this as I know prayer will be the only thing that will get us through these difficulties. I want to pray too that I would speak clearly His message, as I often have opportunity to share His goodness simply by telling Eden's story. There is SO MUCH of God in her story - I just need the grace to share it clearly.  I just love how perfect God's timing is! 

Would you join us this year in devoting to pray - for Eden and other's God has placed on your heart!  I've got a few ideas (crafting of course) to help me remember to pray - as soon as I get some photos of them, I'll be sure to share with you! 

We will keep the blog updated over the next few weeks with how you can pray for Eden and our family. Thanks so much in advance for your prayers! 

Josh, Steph and Eden


Nana & Papa Joe said...

Sweetest pictures of your beautiful baby girl!!!

Beth Ignatz said...

Wow! Once again your family has been hit with some pretty heavy news. We often tease your mom at work about teaching you and Jessica to spread your wings "too far" and that is why you guys have decided to move to other states instead of being in TN. One thing that we need to praise her for is teaching you all to have un-wavering faith. You can always take the "big problems" that would crush most of us, and turn them into a positive for the word of God. I believe you are one of the stongest women I have ever met. Your strength amazes me, and I believe that God made you and Josh Eden's parents for a reason. You guys have just handled all of this with such dignity and grace, I know that no matter what happens with Eden in the future, she will be okay. She will always have two parents and a big family that will love her unconditionally and, in my opinion, that is the best medicine a child can ever receive.

Jess said...

The picture of Josh and Eden on the floor made me smile really really big. She is so beautiful. I'm going to call you later and we are going to talk. Alright. Love ya.