Saturday, February 28, 2009


Eden made it to a step down room this afternoon! YAHH!!!! She has been stable all day and they had a bed available so we were able to move - which means I can stay with her tonight! She's still be pretty uncomfortable and sick to her stomach, but considering all... I think she's doing great!

No word on the cultures. Her fever has not returned today which is a good sign. We're still not sure how much longer she'll have to stay. The plan tomorrow is to clamp the temporary ICP (intracranial pressure) and see how she does. I think another MRI is in her future tomorrow to see how the fluid does with the drain clamped. If the fluid stays stable... the drain will be pulled and we'll be headed home. Please continue to pray that she heals well, stays free of infection and that the fluid remains absorbed.

Thanks again for your prayers, notes, cards, phone calls, emails and messages on facebook. They have been great encouragement and we have read every one.

Maybe a picture tomorrow once I get her cleaned up a bit (the vomiting today was not conducive to photos!).

Steph, Josh and Eden

Saturday : 11am

I just left Eden's room so Nana and Papa Joe could visit a little. Eden looks great this morning. She's much more wide-eyed and even drank some milk for me. She did have a fever early this morning again so they decided to take blood cultures, urine cultures, and culture her spinal fluid... but her fever was down when we got here. Fever isn't uncommon for up to 24 hour after surgery, but they just want to make sure that she doesn't have an infection somewhere. Please continue to pray that her body stays FREE OF INFECTION and continues to heal well.

THanks again... and if this is the first blog check this morning for you, scroll down - I posted a few pictures earlier.

Steph, Josh and Eden

Quiet Night

Not much new to report. I got some sleep last night and never got a call from the PICU... so no news is good news at this point. We're waiting for visiting hours to start and to get to go back and see her again. We'll keep the updates coming today... thanks again for praying.

Steph, Josh, and Eden

Friday, February 27, 2009


Eden's surgery went as well! She's in her room (in the PICU) and seems comfortable. She's quite drowsy, but in good spirits. I'm sure any of us would be crying in pain considering:) 

Thank you for all your prayers this morning. I have been humbled by just how many people from near and far (as far as half way around the world!) have been praying. People we know well and people we don't know at all... Thank you. 

At this point, we would appreciate your prayer for her healing.. that her little body would heal well and stay clear of infection. We are also praying for the fluid to stay absorbed and no reaccumulate (this will be the real test if the procedure was successful) - we won't know this until a few months from now... so this will be an ongoing prayer. 

All glory to HIM...

Steph, Josh, and Eden


Eden's surgery started this morning at 7:30.  They said it is expected to last 2-3 hours. Please be in prayer today for our sweet little one as Dr. Fuchs operates on her ventricles. (see below for specific requests). 

Thanks again... another update promised soon.

Steph, Josh and Eden

Thursday, February 26, 2009

And the Updating Begins...

Tomorrow is Eden's surgery day. We don't know the time yet... we're hoping for early! I have been so humbled already by all the emails, calls, cards, and kind words you have all been sending. I am confident that the Lord is walking ahead of us and preparing this road for us. I am thankful that He knows Eden so intimately and that He will give wisdom to Dr. Fuchs tomorrow as he preforms her surgery. 

Please pray these things for her and her doctors: 
1. For complete and perfect healing - that this will "solve" the problem and she will not require a shunt.
2. That the Lord will protect her mind for harm = so that she can come to know Him one day. 
3. For Dr. Fuchs and the other medical staff taking care of her - that they would be wise in their decisions and actions and know exactly how to take care of her. 
4. That she would have a quick recovery - free from infection. 
5. That the Lord would grant Josh and I opportunities to share about His goodness in our lives in the midst of difficult circumstances.

From day one, our prayer for Eden has been Colossians 1:9-10... and again, I find myself praying it - asking that the Lord would continue to fulfill this in her life: 

" And so, from the day we heard, we have not ceased to pray for you (Eden), asking that you may be filled with the knowledge of His will in ALL spiritual wisdom and understanding, so as to walk in a manner worthy of the Lord, fully pleasing to Him, bearing fruit in every good work and increasing in the knowledge of God." 

We will keep the blog updated frequently. Thank you again for your continued prayers!

Josh, Steph, and Eden

Wednesday, February 25, 2009

A Few New Talents

I abosulutely love watching Eden try and figure out new things. It brings me such joy to watch her do things new - things we have been teaching her... things we wondered at one point if she might ever do. It reminds me of how much God loves to answer our prayers!

Learning to "army crawl"

She's also learning to pull things out of a bucket! We bought her a little cookie jar toy that plays the most annoying song - I think Josh and I could both sing it to you on demand (but we won't!). Eden loves it though!

Sunday, February 15, 2009

Hairbows, Meatballs, and Cup Drinking.

Thats what's been new around here... along with a nasty ear infection, but I wanted to add something light hearted today! 

Eden FINALLY has enough hair for real hairbows (well, real meaning a clippie). I was so excited when I realized this, I ran upstairs and tried most of the bows we have in her hair:) I managed one picture...
I'm trying to add some variety to Eden's diet and get creative with higher caloried foods... come to find out she LOVES meatballs... I guess she should since I religiously ate spaghetti (with the occasional meatball) while I was pregnant (La Forresta anyone?).  At feeding therapy last week, we were talking about other meats to try - they gave her "turkey sticks" - YUK! To close to vienna sausages if you ask me and just the thought of those makes me want to puke. She like them, but I'm hoping for some other alternatives. She's also a fan of mexican - she ate half of the "inside" of a chicken taco today at lunch! I was totally shocked... guess we'll be eating more mexican:) 

We've also been trying some modified cup drinking in feeding therapy (you can see her little cup in the photo below). She's still not keene on the bottle and even less thrilled about a sippy cup. Our feeding therapist at Duke gave us a "honey bear" which is literally a honey bear that honey comes in with a straw out the top - needless to say, she didn't like that very much either... actually I think she's scared of it:) So, they suggested we try cup feeding again (we attempted it a while back, but it was VERY messy). Though she's not too proficient at it, she thinks its hilarious that she can drink from a cup. She giggles every time I put it on her tray. 

Bath time is becoming a favorite too (of mine and Eden's)!  She loves playing in the water and "splashing". I don't take many tub pictures, but this one's appropriate (sorry for the cotton balls in her ears... that the new routine now with her ear tubes)...

I've been up to a lot of crafting lately too... Here's my latest. Its a basket for an auction our church is doing to raise money for missions. In the basket: List Taker, Journal Cover, Set of 12 Notecards, Prayer Journal, and Coffee Cozy... I'd love to know what you think and if you think a set like this would sell? I'm considering one for the shop.

Well... thats enough for today. We've got a week for playdates so it should be nice... we'll update more this week! 

Wednesday, February 11, 2009

Nothing New... whew...

(Eden was very excited about her valentine from Nana and Papa Joe)

So, nothing new to report! Yeah. We're just hanging out enjoying the weather - its been BEAUTIFUL here. Eden and I enjoyed a walk to the post office yesterday - I love the fact that we can walk to the post office:) It was a little windy and I think E would have preferred no wind, but I loved it and it was nice to get outside for a while. As I type, Eden and I are sitting on the front porch just enjoying this nice *unseasonal* weather. What a nice break from winter! God knew I needed a little sunshine to brighten my spirit. 

I wanted to share a verse that my pastor mentioned during his sermon this week. 

"He will dwell with them and they will be His people, and God Himself will be with them as their God. He will wipe away every tear from their eyes and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away... Behold, I am making all things new... these words are trustworthy and true."
Revelation 21:3-5

Larry reminded us that there will be a day when all wrongs will be made right! As many times as I've said "why Eden God?" and "this isn't fair" - I trust in knowing that God is the justifier of all wrongs and one day - all things will be made right! No more suffering - no more crying! Oh, I can't wait for that day... but Scripture tells us we can taste of that justification now! In this I find hope. I know it doesn't seem fair and I pray every day that Eden would be COMPLETELY healed, but I know that if God doesn't choose to heal her completely now - one day she will be restored to perfection - the way God intended for all His creation! 

Here's my new crafts... what do you think? 

Prayer Journal - I'm keeping record of God's answers to prayers this year! 

Verse/Prayer Pouch (because I haven't come up with a cool name yet). It holds index cards that I'm writing verses and prayer requests on to keep in my purse for easy access! (Sorry my finger's in the way - I broke the snap and it won't stay shut).

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