Prayers for Elizabeth

On Thursday, Elizabeth and I had a rare date, just the two of us. She was such a brave patient during her blood-draw, she deserved a treat! 

This moment was made possible by the many people who are loving and serving us right now. They're stepping in to babysit, making meals, running errands, picking up groceries AND bringing me caffeine to help me make it though the day! We're so grateful! And thank you especially for continuing to pray for us. 

Would you pray for Elizabeth tonight? She must have heard me mention that things were awfully peaceful around here, because tonight she's got a 104 fever and we're watching and waiting to see where it goes. We've done this dance with her for six years now, but it's still scary. 

Sleeping Beauty

Elizabeth's in recovery and sleeping off her sedation. The endoscopy went smoothly but since they had to cauterize a big vein they'll keep her for observation for a while. Thanks for your prayers!

Waiting...

Elizabeth was taken back late, at 1pm, so we're still waiting to hear. The poor thing was a mess for having to go without eating and drinking all morning, and the "happy-sleepy" meds we gave her didn't help matters. They made her a sad-drunk of sorts. She desperately wanted to color....with markers...on blank paper...while sitting up. So crayons and a coloring book simply wouldn't do. She resorted to coloring on herself and the sheets...hey, whatever makes her happy, right?? Praise God, Matt had a 15 minute window between clinics and showed up at the exact right moment so he could hold Ava and I could walk Elizabeth back to the OR.

Now, Ava and I are hanging tight and Ava's even managing to help me with her feed! What a big girl!

Thanks for your prayers!

Elizabeth's Day

Not to be left out of the fun, Elizabeth has an abdominal ultrasound and an endoscopy this morning. So She, Ava and I (Sara) are taking a field trip to Children's Hospital. We monitor the status of the varicose veins in her esophagus with regular endoscopies and since she's been really stable, we haven't had to check her since June. We're praying this is just routine and they won't have to cauterize any vessels this time. The hardest part for her is not being able to eat or drink for the whole morning. Her procedure is at 11:30 and she'll be intubated, so the procedure is not without some risks, we'd appreciate your prayers for our Big Girl. I'll keep you posted!

Lamentations

It was June of 2005. I stood in a sea of attendees at a conference to equip church worship leaders. The conference had been a mix of new insights and powerful encouragement, as well as painful moments of feeling isolated and alone, having only recently received the diagnosis for the baby I was still carrying. I smiled when people congratulated me on my bulging belly and wished with all my heart my feelings about the future were only filled with hope.

I stood in the last conference session on the final day when the words floated out to me and I was undone.

I was sure by now, 
that you would have reached down and wiped our tears away
stepped in and saved the day
but once again, I say "Amen," and its still raining.

As the thunder rolls, 
I gently hear you whisper through the rain, "I am with you."
And as your mercy falls, I raise my hands and praise the God who gives and takes away.

For the first time, I had a way to worship IN and THROUGH my pain and not in spite of my broken heart. As the music played I felt free to run to God with my sorrow over Elizabeth's diagnosis and let him meet me where I fell. Matt and I listened to that song dozens of times in the next days and months and it was a lifeline between God and me during some of the darkest moments of my life.

Lamentations

Songs which enable me to express my full range of grief, sorrow and despair in the safety of surrender to a loving and sovereign God.

They remain an integral part of my worship to this day and I am indebted to the artists who have shared their personal struggles through music and lyrics, giving us language for the days when there simply are no words.

**********

I know some of you have walked your own painful journeys. These are a few of the songs that have rescued me from despair time and time again. All are available on iTunes and many can be viewed on YouTube. If you have favorites of your own, we'd be so grateful if you would leave a comment and share.

Praise You In This Storm ~ Casting Crowns
When the Tears Fall ~ Newsboys
Lord I Run to You ~ Tommy Walker
Desert Song ~ Hillsong United
Blessed Be Your Name ~ Matt Redman
Part the Waters/I Need The Every Hour ~ Selah
Show Me Your Face ~ Brian Johnson
Gratitude ~ Nichole Nordeman
I Bless Your Name ~ Selah
Held ~ Natalie Grant
All My Praise ~ Selah
Your Hands ~ JJ Heller
You Are Sovereign Here ~ Stephen Miller

Pretty in Pink!

Not to be lost in all the craziness with Ava is the news that Elizabeth has a sparkly new set of PINK hearing aides! She loves them...to look at, to hold, in the case, and on Ruby. On herself? Not so much.

She has moderate conductive hearing loss in both ears, which means she just needs everything turned up a bit. Praise God it's a problem we can address! Unfortunately the first time the  audiologist turned them on, the volume was so dramatically different that she was completely traumatized! She wouldn't even touch them for days and definitely wouldn't let us turn them on. Lesson learned. So we dialed the sound way down and she's willing to wear them for short periods of time now. If she's eating ice cream. And if Ruby's wearing the fake pair given to us by the audiologist.

So we're making baby steps and are so proud of our brave, flexible daughter. She constantly amazes us with her willingness to adapt to all the "stuff" that's handed to her.

Double Trouble

Would you believe me if I told you two of our angels were camping out together in the hospital tonight?? It's still surreal. This morning, Ava started seizing as we were getting ready for church. After 10 minutes, the ambulance took her and Matt to the ER. When Elizabeth woke up, she was obviously not well, and a call to her Dr. won us a trip to the ER to rule out a kidney infection.

Praise God:
*Since Ava's last admission we've gotten a letter from her Neurologist to expedite things in the ER.
*Ms. Marcia came over and cared for Hannah Mae and Ruby so the rest of us could be in the hospital.
*Miss M comes back tonight and will stay with us all week, so that significantly reduces out childcare stress...at least for the ones at home.
*a friend is here tonight while Matt runs home for supplies.
*We have a shared room! Big Sis and Little Sis each have their own nurse, but will get to sleep a few feet from each other.

Matt's home now, taking the "middles" out for an ice cream treat. They could both use some Daddy Time. We'll just take it one moment, one breath at a time. I cannot wrap my mind around our reality. It just seems impossible! Yet we know God specializes in the impossible. So here we go...

She's Six!

Happy Happy Birthday to our dear Elizabeth Joy. It is a great delight to celebrate you. Cookies for your class, a birthday field trip and a cupcake date for big girls...what a weekend! 

Elizabeth's IEP Update

Because I know a some of you also have little ones needing IEPs, I

thought I'd share that today's IEP meeting was wonderful. I'm amazed at
how much I truly like each person on her team! Each therapist and educator genuinely strives to understand Elizabeth, how she works, thinks and feels and seeks to best tailor their approach to help her thrive. I honestly couldn't ask for more.

Because she has a shadow (an adult assigned to her) for the entire school day , we're going to suspend of the 90minutes each day that she's been getting pulled into Special Ed and she'll be mainstreamed the whole day! The idea is, a shadow accomplishes what TLC would (we hope) and she gets more opportunities to flow, learn and interact with her classmates, while still having 1:1 support for all the areas of difficulty. For her social development, especially, it's a big win. She'll continue to have all her therapies as well as two 30 minute social skills practice groups each week.

I'm especially thankful for her teacher, whose idea this was, and for her shadow, who will be key to implementing it. These two women are such a gift.

No more button for Eliza-button!

Drum roll please.....We took out Elizabeth's G-tube tonight! I can't explain all the conflicting feelings in my heart. I'm SO thankful that we had the g-tube to help keep Elizabeth alive so many times when she was so sick, to help her grow when she didn't know how to drink or eat. While at first I definitely had a love/hate relationship with the "button", and all I could think of was trying to wean her so we could take it out, in the past year and a half I'd made peace with it, and was in fact, thankful for the flexibility it provided us as we tried to teach Elizabug to eat.

After talking it over with her GI, we agreed that now that she's solidly eating by mouth (still learning to chew but making steady progress), she's proven that she can eat enough to keep from loosing weight and she's stayed out of the hospital and eating by mouth despite some gnarly colds this winter. Suddenly, removing the tube became realistic. So we did it! Ironically, I shed a few tears...it's been quite a run for the little button, but otherwise it was pretty anticlimactic in light of how much her eating and tube feeding has dominated our lives for the last 3 1/3 years.

We're praising God that tonight, Elizabeth is tube free, eating and drinking by mouth and sleeping soundly at home. The next step is finding homes for all the tubing and syringes we've got in our basement...It feels good to finally be able to say, "we don't need it!" Here are some before and after pictures.