Cora’s Health Journey with Arteriovenous Fistulas (AVFs)

12339337_10208045343513519_7248543003623778983_oIn November 2015, my small daughter, Cora, was diagnosed with a life-threatening cerebral AVF – a swelling vein and artery connection right over her brain stem. God showed us incredible answers to prayer that month by saving her life through a high risk, very experimental procedure. While the big problem has been taken care of – praise God! – there are several smaller AVFs that remain, which may need to be addressed in the future.

I created this page as a chronicle of the health updates I post to my personal Facebook page and her public prayer page (Praying for Cora).  My hope is that her story might be found by others experiencing similar conditions, and be a source of encouragement and inspiration, and that family and friends who don’t have Facebook can read her health updates here.

Here are the updates in chronological order. Also, if you want to see the unique, special way God prepared me before this crisis, read my post from early November, How God Used My Fictional Character to Teach Me True Things.

 

November 12, 2015 – Cora has her first MRI

Friends, I know a lot of you have been asking and wondering how today went. The MRI did indeed happen this afternoon. We expected to have results by the end of today, but our neurologist literally hurried over from her office during the MRI to sit us down and tell us what was going on. As soon as Cora woke up from the anesthesia they wheeled her down to the ER.

Cora has an arteriovenous malformation (AVM) – a malformed mass of blood vessels which are swelling and pushing on other parts of her brain (thus causing her symptoms). It is quite large – 2.3 centimeters or so – and sitting right on her brain stem and squishing it. This is a very serious condition because if the AVM ruptures, it will be catastrophic and probably fatal. Thankfully they do not believe it will rupture super soon…it has been growing at a slow rate and will probably continue to do so for the time being.

But they can’t just leave it, because the risk of rupture increases over time. There are a variety of ways they can try to fix it (which carry risks, such as rupture). But the first step is to get an angiogram so they can see where the blood is flowing from and to in her brain, because that will tell them how they can proceed. The angiogram will probably happen early next week, and there is a small possibility that they might be able to block the blood flow *during* the angiogram, if they see an easy opportunity to do so.

For now, we are back at home, just waiting for the angiogram.

PRAISE:
– that we got results *fast* (answer to prayer there!)
– and that the doctor who will be taking her case is THE BEST neurosurgeon in the nation for pediatric AVMs (possibly even the world)!
– and that Cora did very well today, sweet girl, even having to fast for a full 24 hours before they gave the okay to feed her (the MRI techs didn’t know if the neurosurgeons might want to do surgery right then and there, so they kept her fasting until we’d seen the surgeons later in the day)

PRAY:
– that God will protect her and keep the mass from growing worse before it can be addressed
– that the doctors would have great wisdom, speed, and skill in handling this, so that she might be healed quickly
– for the comfort and peace of the whole family, grandparents/aunts/uncles included

This is hard news. Christopher says it feels very surreal. I feel like God graciously prepared me for this over the past couple of weeks…so while I am sad, I am also very, insanely calm (the work of the Holy Spirit, for sure)! We do not trust in the hands of the best human neurosurgeon the nation can provide, but rather in the One who made Cora, made that surgeon, gives us peace, and perfectly crafted this entire situation to bring Him glory and to bring us blessing. He does not always bless how we expect – with our finite human ideas of the future, we would not choose this for Cora, for us, or for our family. But we trust His all-wise knowledge that THIS road He gave us to walk is the best one. Our foundation and hope is not in having a happy, healthy daughter, but rather on the surpassing joy of Christ and His promises, which cannot be taken from us by any earthly circumstances. The Lord gives and takes away, and blessed be His Name in whatever He does! But He has absolute, almighty power to heal, and He loves to hear the prayers of His people – so we can boldly pray for our sweet girl’s healing and know He hears, and He cares, and He can preserve her life for His glory.

“Peace, perfect peace,
With the future all unknown?
Jesus we know,
And He is on the throne.”

Thank you for your continued prayers and encouraging words! They are a huge blessing to us.

November 13, 2015

Thank You, God! We had an encouraging phone call with the neurointerventionist (Dr. Darren Orbach) this morning.

Based on the MRI he believes Cora actually has something called an AVF (arteriovenous fistula); the difference is that an AVM is multiple arteries connected to multiple veins, while an AVF is one artery connected to one vein. AVFs are the ones where the vein tends to balloon and press on the surrounding brain, like Cora’s has.

He assured us that the angiogram itself is very low risk (which was great to hear) and said they will try to do an embolization (close off the artery/vein connection) during the angiogram if they can. Apparently AVM’s usually need surgery while AVF’s you can typically fix with embolization. The main risk of the angiogram is bleeding at the entry site, and the main risk of the embolization is blood clotting in her brain afterward, which they’d probably prevent with medication.

He said the speed at which the symptoms developed is a good sign of how severe the situation is…because Cora’s symptoms have grown slowly, it’s not as immediately dangerous as it would be if she’d gotten the symptoms, say, overnight.

Overall, it was a reassuring conversation, and the doctor himself seems very nice. They will call us Monday morning to schedule the angiogram, which will probably be Tuesday or Friday next week.

Thank you for your continued prayers!! And thank you to everyone who has shared about Cora…it’s been humbling and amazing to see how many are praying for her! This update is set to public and can be shared if you have friends praying.

November 14, 2015

Miss Cora’s walk is very weak today, and she seems to struggle more with chewing and swallowing. I talked to Dr. Stone (the neurosurgeon we met at the hospital, who kindly gave us his cell number to ask any questions) and he said he would talk to Dr. Orbach when he gets back and push to have the angiogram Tuesday, which is the soonest opportunity. Please pray they are able to do that Tuesday and are able to do the embolization that day as well! It is so sad watching these essential physical skills wither away.

November 14, 2015

My life always feels a bit like a too-fast merry-go-round. But right now it feels like the merry-go-round turned into a tilt-a-whirl-roller-coaster. And there’s no way to see whether there’s a big drop coming up.

It’s tricky to talk about anything real. Because if I mention feeling overwhelmed, I worry people might think I’m asking for help. I’m not. (I have many, many offers, and I am keeping them all in mind for when I need things!)

I’m just keeping it real here. Life is crazy. I am discombobulated. That’s just the sum of things.

Today we had a family photo shoot and spent time with my family. Tomorrow we are keeping the kids home from church (to avoid colds/germs in anticipation of Cora needing anesthesia again next week) and then spending some time with Christopher’s family. Given the uncertainty of the future we are grabbing as much family time as we can. I am much more hopeful about a good outcome now than yesterday, after talking to Dr. Orbach, but there is still a ticking time bomb in our baby’s head that seems to be getting worse and can’t be ignored.

On top of that I am constantly aware of all the laundry and cleaning and homeschooling and thank-you-note records and food making and all the other things I generally keep on top of (at least passingly…), but now can barely remember to save my life. And Christmas!! Don’t even get me started on Christmas! 😛 Again, NOT asking for help or trying to throw a pity party here – I’m sure you all understand that. This is just my life right now, and probably the life of any mother whose child has just received a life threatening diagnosis. I’m not all calm trust and cute kid pictures. I’m also running in circles like a chicken with its head cut off. I try to give myself a lot of grace, but my responsibilities still weigh very heavily on me when I can’t fulfill them as I wish to. So if I forget your birthday, a commitment, to read a book you wrote, to reply to your comment, to call you, to thank you, what your name is, etc. etc….please forgive me. I can be absentminded in the best of times, but this isn’t the best of times.

I want off this tilt-a-whirl frequently, but God has decided we need this ride in order to reach the destination He has in mind, so I’m just holding on and trusting Him to be the reliable seatbelt He has always been and always will be, even in the unexpected loops.

I wish I could hug ALL my friends who are praying for us. I’m sure your prayers are part of what’s keeping me from going slightly crazy right now. 😛 Love you all!! Thank you for being there for us.

November 16, 2015

I played phone tag with various hospital offices today, trying to find out if they can schedule the angiogram yet. They said Dr. Orbach is working on it, but at this point it looks like Wednesday will be the day rather than tomorrow. Cora has to stay in the ICU for two nights afterward for observation (assuming they can do the embolization), and at this point their ICU is full. Pray they are able to do it sooner rather than later! At this point she is very weak and shaky on her feet. Her noticeable decline over the weekend has been a little bit alarming to the whole family. Also pray for Christopher, who has had a hard time concentrating at work – he can’t take time off yet, but the waiting is hard.

Edited to add: Normally I might be frustrated at the medical staff, because this has been so slow and I’ve had a hard time reaching people today. But having SEEN how caring they are, and how clearly they want the best outcome for Cora (and all their other little patients!), makes me wait calmly because I’m sure they’re doing everything they can. And I realized this is kind of like how God has cared for me over the past couple of weeks! I’ve SO clearly seen His love, and it strengthens my trust in Him and my quiet submission to His care and the time He takes in answering prayers.

November 18, 2015 – Cora has her first angiogram

Cora is off for the angiogram!! We spoke with Dr. Orbach about the procedure, his plan, all the risks, etc. Cora’s symptoms have been even worse today (she’s been falling a lot, unable to walk upright very well) so he said that even if they can’t do the embolization during the angiogram, they WILL formulate a plan and address it as soon as possible, and she won’t go home until it has been dealt with. We’re here until she comes home healed, Lord willing!

– – –

The news is not good, loved ones.

They were unable to do the embolization today. The artery and vein are connected through a HOLE in the artery, which means there is no good place to put anything to block the flow from the artery side because that artery goes to important places in the brain and there is too much risk of blocking off the blood flow there. They could try to block it from the vein side, but it’s unlikely to “take” because of the speed of the blood flow, and it’s also very risky.

Dr. Orbach says he has has never seen anything like this before…..not what you want to hear from one of the best neurointerventionists in the world. He does not see any good solutions at this time.

Cora is staying here tonight in the ICU and Dr. Orbach will have a doctor’s consult tomorrow with several colleagues to discuss her case.

Please keep us in earnest prayer. And the doctors’ meeting too!

“On Christ the solid rock I stand;
All other ground is sinking sand.”

– – –

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In the ICU for the night. Pray for her comfort – she is pretty miserable and has been moaning and begging for water (which she can’t have yet). My heart goes out doubly to every parent who has ever had a child suffering in an ICU…it is a special kind of mini-hell.

November 19, 2015

The doctors met this morning (we hear 10 to 20 of them got together!) but they have unfortunately not yet come to a conclusion on the best plan of action. Any procedures will be done tomorrow at the soonest; for today we wait. They are trying to move Cora from the ICU to the neurosurgery department for tonight – and she can finally eat and drink!!! She is a happy girl.

– – –

Dr. Orbach has been consulting with colleagues across the country all day. So far no good solutions have stood out, but he says it has gotten the gears turning with brainstorming. He’s clearing a slot to do a procedure on Monday even though there’s no solid plan yet – Cora will be staying at Boston Children’s Hospital until that time.

His tentative plan is to proceed with partially closing off the artery where the hole is, because she has another set of strong arteries that should be able to pick up the slack of that important artery.

For now, she is moving out of the ICU to stay in a regular room until her tentative procedure Monday, after which she will return to the ICU again for at least a couple of days.

It has been humbling and amazing to see so many prayer warriors gathered on Cora’s behalf (even internationally!) – a veritable prayer army in service to our King! I have great confidence in the Lord who created Cora, her brain, and the minds of these brilliant doctors, because He hears these many prayers and has great compassion on His children.

We have told Dr. Orbach that we are praying, too. May God’s name be glorified in this hospital by Cora’s healing!

– – –

I was sad to leave Cora tonight. She was so cheery and cute, enjoying a new balloon from Pater and Marmee and thrilled to be freed from some of her IVs and able to eat and drink again. It was hard to walk out, especially because Cora has a roommate in her new room, and as I passed I saw that girl’s mother [actually grandmother, I found out later] nestled up beside her on the edge of the hospital bed – a desperate desire for closeness with her baby that I understand all too well right now. But other babies need me too, babies who miss their parents and middle sister Cora very much. It’s hard having my family split across two states with an hour’s drive between us! This will be a long haul. It already feels like she’s been in the hospital a week rather than one night. It’s looking iffy whether we will even have her home by Thanksgiving; at the absolute earliest, she’ll be home the day before.

But at the same time as all this exhaustion and sadness, God has indeed kept me “in perfect peace” (Isaiah 26:3). I actually have great joy in this time! I feel upheld by the many prayers on our behalf, and I am eagerly confident that God will answer these prayers – but yet, if his answer is, “No,” I also know firmly that He is good even then, and His wisdom is greater than ours. Cora is His; her precious life belongs to Him. And He is already using this hard situation to bless so many people, deepening relationships, changing hearts, encouraging others. It is incredible to see Him work through hardship to bring good to His people and glory to His name.

Below is a little poem prayer I wrote last year, from the perspective of a mother about a daughter. I’ve been wanting to share it, because it feels relevant now. It was poignant to write at the time, of course, but now it has much more meaning – and it is actually less scary to pray this kind of prayer now, because God has deepened my trust in Him since I wrote it:

Give her Your best;
Father, give her Your best.
Pour it out on her;
Hold back the rest.
Bless her with cancer,
Bless her with health,
Pass her down poverty,
Pass her down wealth,
Make her a widow,
Make her a wife,
Make her a lonely girl all of her life…
Whatever You do –
And I know You are wise –
Give her Your best, Lord.
Please give her Christ.

Anything we have and treasure in this life can be taken away at a moment’s notice. Either it will not last, or it is vulnerable, and if we put our ultimate hope in something earthly, our hearts and souls are vulnerable along with that fragile thing. But if we are in Christ, and Jesus is our greatest treasure, we can know and be sure that we will be utterly unbreakable, because the source of our joy and the fountain of our strength is the Lord, who is above all things and the glorious Giver of all good gifts. He showed me that, early on in this trial – long before Cora was diagnosed! He changes hearts in such gentle ways sometimes. And if He can influence my heart to see His beauty even through simple motherly worries about losing a child, just think how many other hearts He can impact through Cora’s life! – whether it is only a few days more, or a hundred more years.

“But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed …. Since we have the same spirit of faith according to what has been written, “I believed, and so I spoke,” we also believe, and so we also speak, knowing that he who raised the Lord Jesus will raise us also with Jesus and bring us with you into his presence. For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God. So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” – 2 Corinthians 4:7-18

November 20, 2015 – Dr. Orbach plans for “extremely risky” procedure

Dr. Orbach's diagram of the arteries

Dr. Orbach’s diagram of the arteries

Dr. Orbach has been forming a plan for Monday morning. The procedure he is going to try has never been done before. In his words, it is “extremely” high risk.

They are going to entirely block the big artery where the hole is, using a collapsible cup-like object that can be pushed into place out the end of a catheter. The side of the “cup” will block the hole, and if all goes well, other arteries in the area will pick up the blood flow instead and carry it where it needs to go.

Clotting around the blockage is a big risk, and also very dangerous because of the AVF’s location (right over her brain stem). Cora will be closely watched and kept on blood thinners afterward. If all goes well, she will be in the ICU for 2 weeks.

Because of the very real possibility that we will lose her on Monday or the days following, aunts and uncles are traveling in from out of state to see her over the weekend, and we will be taking her siblings to see her extensively as well. We have not lost hope, but are preparing ourselves for the possibility that the Lord may take her to Himself sooner than we would choose in our human wisdom.

It seems that God has removed our earthly hopes here, for His own good reasons. We cannot even boast of having the best neurosurgeon for the job, because even he has never dealt with a problem like this and admits that there is no “good” solution. Our only hope is in the Lord – which is a pretty good deal because He has the power to do anything.

If I say, “Surely the darkness shall cover me,
and the light about me be night,”
even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.
For you formed my inward parts;
you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.

— Psalm 139:11-16

What feels like a dark shadow over our family is still light to God, who knows His own works and His purposes in Cora’s life. Please remain in steadfast prayer for us, that God would be glorified in our hearts and words, and that He might save the life of our precious Cora and bring praise to His name through her healing!

EDITED TO ADD:
For those that are interested and visually oriented, here is a diagram of the situations and the planned fix. The image shows the “cup” in the center directly above the Basalar artery. On the left is the hole and the flow of blood is indicated by the lines with the arrows. The large “shape” is the blood vein/vessel pouch that is causing her problems. Placing the cup in this location will cut off the flow of blood from the vertebral artery (VA in the diagram) and the intracranial vertebral artery (ICA in the diagram) from the front of her brain will provide the needed blood back to the area on top of the “cup” as there are several small arteries that are critical for brain function that stem off this area (the smaller squiggles in the “Y” between the branches of the posterior cranial artery (PCA in the diagram). This area is also “home” to the brain stem (that’s the word there at the top).

November 21, 2015

I heard this from Cora’s Grandmom this morning – an encouraging reminder:

“I spoke with a mom in the play room last evening whose little boy has been under Dr. Orbach’s care for 5 1/2 years for an exceedingly rare (one in a million) vein of Galen AVM. She mentioned that at his yearly MRIs, they’ve a couple of times seen that he should have a repeat embolization, but Dr. Orbach deemed it too risky at the time and held off. I thought this might be encouraging to you—if he is willing to try this procedure, he must believe that the potential benefits outweigh the risk. He is progressive but also conservative. She spoke very highly of him. I know the Lord has it all in his hands, and perhaps he brought [that little boy] and his mom to the play room to bring a little encouragement. I know Dr Orbach has an amazing reputation at Children’s and beyond, but I felt like that conversation was particularly directed by the Lord for assurance.”

November 22, 2015

Over 16,000 unique Facebook users have seen posts from the Praying for Cora page, and the numbers keep climbing!!

Even more amazing to me is the number of people who have told me they are blessed by my posts about her, or have been blessed by me in this situation.

Only the salvation of Christ can make you give thanks and stand in grateful awe that God is using your hardship to bring Him praise, even when it feels like He’s torn your life in pieces, gutted you, and put you on public display in all your empty-handed, helpless vulnerability. This laying down of one’s life in His service is not natural; it is supernatural in origin, wrought only by the Holy Spirit. I weep tonight, because I am painfully aware that I am not worthy to serve Him in this way! – but yet He is worthy of all the praise and honor I can give Him, and far more, because He loves and redeems sinners like myself. He uses us in our weakness to showcase His power.

And so I open my hands to take what He gives me, even if it hurts more than I can imagine, because my Savior bore worse pain for me, to purchase my eternal glory.

Whether He takes Cora away in death or causes miraculous healing that astounds thousands around the world, He is good, and His mercy endures forever.

November 22, 2015

Today her walking is notably worse (we need to constantly spot her in case she falls) and she has been having more trouble chewing/swallowing. Pray for her protection as we wait for tomorrow.

– – –

Cora’s procedure will be at 7:30 a.m. EST, tomorrow morning (November 23rd). We do not know how long it will last, but we greatly covet your prayers all of tomorrow morning.

Please pray:
– for skill and wisdom for the doctors
– that the AVF would be fixed
– that the blood would reroute as hoped
– that there would be no clotting
– that the peace that passes understanding would rest on our whole family
– that our little girl would be HEALED!
– that God would bring glory to His name

We are exhausted, worn to the bone (and many of us have to be up before dawn tomorrow morning to travel to the hospital). But we are hopeful. No matter what He is up to, it is clear that God is doing a great thing in this situation! He has raised up an army of prayer warriors on her behalf – we are humbled and blessed to know that so many are praying (and in some cases fasting and praying) for our little girl. I know this is early in the morning for many of you, but being upheld in prayer during that time would mean a lot to us. Thank you ALL.

“And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Therefore, confess your sins to one another and pray for one another, that you may be healed. The prayer of a righteous person has great power as it is working.” – James 5:15-16

November 23, 2015 – Cora’s procedure day

It’s 5:00 in the morning and my parents are driving me to the hospital. The skies are dark, clear, and full of stars. I pray that the God who made the stars with a word will protect our little girl today. May doctors and surgeons be amazed at His handiwork. May we come home under the same stars tonight, rejoicing.

– – –

Cora is in the procedure now. We received an update that she went to sleep just fine and they’re in with the catheters and ready to start doing the angiogram imaging they’ll need to proceed. We will get another update at about 11:30 AM (EST).

All four of Cora’s grandparents, our pastor and his wife, and our pastoral intern and his wife are all sitting with us for this long wait.

It was so hard to kiss her goodbye before they took her to the procedure room. Thank you for all your prayers for us – they are felt.

– – –

Update #2 came in – Cora is still doing well. They’ve gotten all the imaging they need, and are going to start placing the basket/cup to block the artery now. Edited to add: we will get another update at 12:30 PM.

– – –

ALL PRAISE BE TO GOD!!!

Cora’s procedure went PERFECTLY!

Dr. Orbach was very pleased with how it went – he’s usually so serious but I could see him hiding a smile the whole time he talked with us! He said the device fit beautifully, just as hoped, and completely blocked the hole. He didn’t see any clotting (yet) and the arteries seemed to be rerouting the blood properly. He doesn’t even think it’ll be a full 2 weeks in the ICU as originally predicted!

Obviously we are still taking it one day at a time. There’s still concerns about clotting, and stroke, and increased swelling caused by them fiddling around in there (which could stop her breathing, so she’s currently intubated and will remain that way for awhile, possibly overnight).

Keep praying for her safety and total healing, and please praise God with us that He answered our prayers for a successful procedure!! We are sure that literally thousands were praying for our sweet daughter this morning – God hears and answers! He is good!!

– – –

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So thankful to kiss our sweet girl this afternoon!!! She will be sedated and intubated until an MRI has shown the swelling in her brain is the same or less than before the procedure. She should have the MRI at 4:00 PM.

– – –

Dr. Orbach said the MRI looked great!! The blood flow in Cora’s brain looks good! They are going to take the breathing tube out and then keep her mostly sedated for the night to prevent bleeding from the catheter entry sites. Keep praying that she would be protected from bleeding, clots, and stroke!

I am astounded and humbled to see that my last post (praising God for Cora’s successful procedure), has reached 28,000 people and counting. I never in my life imagined that God would allow me to praise His name and proclaim His goodness before so many people. I am totally unworthy of this honor, to proclaim His name in suffering, and yet He uses the least of us to bring glory to Him, in His immense grace and kindness.

Thank you for all your fervent prayers, tears, and fasting on Cora’s behalf. It is clear to me that God was mightily moving His people to pray for her, with every intention of answering in power!!

“This is the Lord’s doing; it is marvelous in our eyes. This is the day that the Lord has made; let us rejoice and be glad in it.” – Psalm 118:23-24

*happy dance* There is much rejoicing tonight!!

November 24, 2015

They have lowered the dose of blood thinner and are watching Cora to see how she does – if she’s doing well they may even move her out of the ICU into a regular room as soon as tomorrow! Her voice is already sounding louder and clearer than we’ve heard it in a long time – praise God!! This is all so exciting!

However, she’s having some issues with muscle spasms and agitation, probably from her meds – we had a scary moment this morning when she was shaking all over and screaming for me, “Mommy!!” (It was a nice strong scream, though! But also the most frightening moment yet, for me.) She is also still bleeding a bit from one of the catheter entry sites. So please pray God would continue to watch over her and heal her, and protect her from complications!

Overall she is doing well, but it’s just a reminder that she’s not out of the woods yet.

Thank you for your continued prayers for her.

– – –

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Cora was not the happiest camper in the earlier part of the day. She was on a sedative to keep her still (to avoid bleeding from the hips). So most of the time she was zoned out and not very responsive. But her face twitched a lot…and several times she got alarmed by something and would have a violent fit of full-body shaking and sobbing. The first time this happened, when she was screaming my name, was right after I arrived to see her in the morning… Long story short: I almost fainted, I burst into tears when it was over, and I spent most of the rest of my visit recovering, crying and praying and resting on the parent bed in the back of the room.

I’ve been so intensely calm through this whole ordeal. God has gifted me with enormous peace; I barely shed any tears even when we heard her life-threatening diagnosis, and even though I’m a happy-tears kind of person I hadn’t cried yet at ALL since we found out the procedure went well yesterday. I knew eventually I’d have a breakdown of some kind…regardless of trusting God, one does not simply face losing one’s child without powerful emotions. 😛 But I didn’t expect to have my breakdown forced on me by a scary moment like that! Whew. I guess God knew I’d bottle things up and needed a good shaking. Hahaha.

So thank you to anyone who prayed for my peace of mind today! I really needed it, 😛 and God has brought me back to a place of calm again.

By His providence, another of Cora’s fits happened while the neurosurgery team was making their rounds, and they were able to say for sure that it was a side effect of the sedatives she was on. So now she’s off the sedatives and doing MUCH better!

SO many praises today!!

Dr. Orbach came by and said that her MRI last night showed the swelling already going down! This is completely consistent with what we were seeing just observing her. Her voice is already stronger, louder, and more articulate. She’s not drooling. She’s chewing her food better. And even with the heavy meds her eyes were more focused today than they’ve been for the past week!!

They still anticipate moving her out of the ICU and into a regular room tomorrow…Dr. Orbach was even suggesting she might go home on Friday!

God is doing such marvelous things in this situation. His mercy is great!!

November 25, 2015 – Cora leaves the ICU

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We’re out of the ICU!!!! After thinking we’d be there two weeks, we were only there two nights! God is so good!! They gave us a cozy private room on the neurology floor with a cool Boston view, a couch, a mini fridge, a private bathroom… We think Cora will be MUCH more comfortable here! She’s still exhausted, but seems happier already.

– – –

Moving out of the ICU is a wonderful step, and Cora’s been much happier in a regular room – she even downed half a sandwich and a small container of milk for dinner!

But overall it was still a hard day. She is terrified of all doctors and nurses now, has barely slept in the last 24 hours, and ended the day by accidentally ripping out one of her IV’s. Pray she gets a good night’s rest (Dad too!) and that her anxiety of medical staff subsides and doesn’t become a lasting thing. She’s been through a lot already for someone so tiny.

November 26, 2015 – Thanksgiving Day

Cora was allowed to get out of bed today! We took her siblings to see her, and she got to ride in the stroller several times around the neurology floor…I saw a few genuine, big smiles from her during their visit!

She is too shaky to walk unless we hold her up (and only for a few steps even then). This isn’t a surprise, because she was walking poorly before the procedure due to the AVF, and then she spent several days bedridden and not eating/sleeping much. But it is discouraging, especially to her because she doesn’t understand why. She’s a determined little girl, though! I explained that each time she walks she’ll get stronger, so she asked to try again a couple of times during the day. By the end of the day she was talking a bit more, too. But her progress has been slo-o-o-w. Each day she is subtly better.

I think because her procedure went so well, everyone subconsciously expected her recovery to be fast, too. Thus far, God has not ordained a fast recovery. It looks like it will be a long road.

Everyone has been saying, “This has got to be your BEST Thanksgiving EVER!!!” To be completely honest…yes and no. This has simultaneously been the happiest and saddest Thanksgiving of our lives. It’s happy because God has amazingly given us more time with our sweet daughter who we thought we might lose this week (and because my family brought us a Thanksgiving feast at the hospital!) – but it’s sad because it really didn’t feel like Thanksgiving. We sat exhausted in a hospital room and watched our tiny girl with matted hair sit in her bed and refuse most of her dinner…and we desperately missed the other half of our small brood of children, who were in the care of family at the time.

I keep telling myself it is okay. It’s okay to be sad on Thanksgiving. We can be sad, yet still thankful. God is still good! He knows this road He has given us to walk is a painful one, that our hearts will ache, that we will feel torn apart and lonely and grieved sometimes. But He is good even in the hard times. He holds us in our pain and cares about our burdens. He uses every circumstance for a good and meaningful purpose in our lives, to draw us closer to Him – the greatest treasure – and THAT is something to truly be thankful for. In Him we have lasting joy that is sufficient even for the hard times.

“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” – John 16:33

“Give thanks to the Lord, for he is good, for his steadfast love endures forever.” – Psalm 136:1

November 27, 2015

Dr. Orbach wants to keep Cora at the hospital for now because she is still not walking on her own yet. She will probably do some intensive physical therapy over the weekend, and might be released on Monday if she’s more ambulatory by then. Overall he said he is really happy with her progress and how well the procedure went – so of course I had to let him know that literally thousands of people have been praying for her. 🙂

Cora has been discouraged by her inability to walk, and at this point is scared to try. Last night Christopher heard her wail in her sleep: “I can’t walk!! I can’t walk!!” So sad. We took her to the playroom a few times today and she mostly sat on the floor, cried because she couldn’t get up and play, and asked to go back to her bed. (However, the third time she went, I convinced her to stay and play with an Operation game board, and she burst out with some great grins and loud giggles when the buzzer went off! That made my heart happy.)

Please pray she gains confidence and strength to walk again! Thank you all for continuing to lift her up before the Lord.

P.S. I can’t help but think of this passage:

“And immediately Jesus, perceiving in his spirit that they thus questioned within themselves, said to them, ‘Why do you question these things in your hearts? Which is easier, to say to the paralytic, “Your sins are forgiven,” or to say, “Rise, take up your bed and walk”? But that you may know that the Son of Man has authority on earth to forgive sins’—he said to the paralytic—’I say to you, rise, pick up your bed, and go home.’ And he rose and immediately picked up his bed and went out before them all, so that they were all amazed and glorified God, saying, “We never saw anything like this!’ ” – Mark 2:8-12

He is able!

November 28, 2015

The Lord continues to answer the prayers of His people in marvelous ways! “On the day I called, You answered me; my strength of soul You increased.” (Psalm 138:3) Holding our hands lightly, Cora walked the halls for a stint of about *twenty* minutes today! She’s also been much happier – lots of smiles, and so much more talking! It is such a joy to see our sweet girl’s personality and abilities returning. God be praised!

November 29, 2015

Cora! Is! Walking!!! Our prayers that she would walk independently today have been answered. She is walking and TALKING and smiling and laughing! She even giggled and chatted with the *nurse* today instead of crying when she came to take her vitals. (That’s another direct answer to prayer!) All of a sudden her entire happy, chatty personality is back – and she does everything better than she did before her procedure. (She’s also ticklish again!!…we just assumed she just wasn’t a ticklish child anymore, but it was from the AVF in her brain!) It’s as if she was living in a dizzy fog for months, and all of a sudden…she’s woken up!

We have NO doubt that she is coming home tomorrow. I might cry for joy. Praise the Lord!!!

November 30, 2015 – Cora goes home (one week post-procedure!)

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We’re taking our girl HOME!!!!

Glory be to the Lord our God! For He has done marvelous things!!

We thought we might lose Miss Cora, or at best she would spend 2 weeks in the ICU and even longer in a regular room. Now, ONE week (to the hour!) after we thought we might kiss her goodbye for the last time…we are taking her home in joy, listening to her laugh loudly in the back seat with her siblings. Dr. Orbach expects her to make a full and complete recovery.

God is great!!! He is near to us and compassionate toward us and answers our prayers. I am SO EXCITED to celebrate this season of Emmanuel, God With Us. Let Earth receive her King! *tears of joy* This will be the happiest Christmas EVER.

– – –

It was a joy to tuck Cora into her own bed at home tonight after a long day of celebration!

I want to say a huge THANK YOU to everyone who has prayed for us through this week. This page has been followed by 1,195 Facebook users (and counting!) and I know the number of people lifting her before the throne of grace was far, far more than that. I love each one of you and I am so grateful to see how the Lord has brought legions of His people together to pray for our little girl.

But the journey is not over yet. There’s been some misunderstanding about her symptoms – I’ve seen a few posts proclaiming that she is totally healed and her symptoms gone. She’s not there yet! The symptoms are much better and *some* are completely gone, but her brain tissue is still expanding back into place as the pressure subsides. She’ll need physical therapy to regain strength and coordination. For the foreseeable future she is also on blood thinners to protect her from clotting, so we have to give her injections twice daily…or rather, Daddy has to do it because I don’t do well with needles. 😛 (Poor baby!! I bet she will grow up to be tough, though, if she has daily shots for a long time or forever.) Next week she will have another sedated MRI to see how her brain is doing, and a month after we will have a followup angiogram. Dr. Orbach also found other, smaller AVFs in her brain, and he wasn’t sure if they were a direct result of the big one (and will hence subside along with it) or if they need to be treated separately in the future.

So please continue to remember Cora and our family in prayer!

I hope you’ll indulge me “blogging” a bit below. I’d love to share some of what God has been teaching me…

I used to believe that the basic purpose of prayer was to change our attitude toward what we want…you know, so we’ll be more accepting when God says, “No.” 😛 He has a plan already for what will happen, so why pray for a specific outcome? I wondered. In many ways I looked at God as a practical, dispassionate parent who is reluctant to let their child have nice things and quick to deny them pleasures, because…why not? We don’t deserve anything from Him, after all! And He teaches us through hardship, I reasoned, so it probably is best for us to not get what want. For years I rarely asked God for anything passionately. It seemed “safer” to wait and see how things played out than to ask and get told “No.” I remained apathetic toward my own requests to avoid disappointment. And if I didn’t desperately WANT something, what was the point of praying for it? I was already passive. I didn’t need my attitude adjusted with prayer, right?

In the past few years I’ve grown to understand God better, seeing how close He is to each of us and how compassionate He is to our concerns. Yet I still struggled to trust His kindness. I fully trusted Him to do what was best with my life, but I expected the best to be mostly unpleasant and hard. I looked on my life’s enormous blessings distrustingly, waiting for the other shoe to drop. “Where’s the catch?”

I believed Satan’s lie that it was God’s desire to crush me at some point, somehow. Because I trusted God, I was willing to be crushed and figured the eventual crushing would turn out good in the end – but the whole thing was still a lie of Satan, and I didn’t shut my ear to it hard enough!

Weeks ago, at the height of my anxiety about Cora’s health issues when I began to fear the worst might happen, I took my dreams for her life and gave them to God. One by one, I handed Him my tender visions for her future, like precious treasures wrapped in tissue paper of bright hope. I released each one to Him, and told Him, “Here is what I want. Here are my desires and imaginings. But do whatever You will with them.” It brought incredible peace to know that my hopes and fears rested in the hands of the Almighty God, who would do what was very best with my desires.

But having fully submitted to His will, I soon struggled with that old apathy of mine. As strange as it sounds, for a few days after her diagnosis with the AVF, I struggled to plead for my own daughter’s life. I could barely see another outcome than her death.

I wasn’t submitting…I was settling. How sad is that??

By the grace of God, I had deep, firm trust that He will bring good out of all suffering and He always has a good purpose in giving us hardship. I trusted his absolute power to heal her. But, I didn’t *expect* that to be His will. I still expected to be crushed. I was bracing myself for the shoe to fall.

I have been praised for my faith in this trial, but what a lack of faith I had there!

Right at that time when I needed it, God brought several sermons and blog articles my way that convicted me of my attitude and helped me pray in earnest again, to reach down into the depths of my soul and cry out to Him instead of dulling my wishes into passivity.

Again and again I pleaded, “I believe; help my unbelief!” (Mark 9:24)

And has He ever!!

Looking back on the whole trial now, my breath is taken away. I am astounded that He would allow us to experience this hardship for His name, to proclaim His goodness in the midst of pain, all to bring glory to Him, and THEN to bless us, and bless us, and bless us *again*, not only with direct answers to our prayers but astonishing side-effect blessings that ripple outward in every direction. It has all been grace, grace, GRACE, from the beginning to the end, and I am thankful for every single moment, from the joy of leaving the hospital today to the raw terror of watching her shake and scream for me in the grip of strong medications. God’s grace is in every detail, working His powerful purposes through all the highs and lows.

What I now know (not only in theory like before, but in experience), is that He doesn’t ask us to pray only because He wants us to have a good attitude toward His plan. He also urges us to pray because He intends to USE our prayers and our passionate desires as *part* of His plan. He does not merely delight in surprising us with blessings we didn’t expect, but also in giving a resounding, happy, “YES!” to our pleas. He does not teach us and draw us closer to Him only in suffering, but in joy as well.

And He does not desire to crush His children, ever!

My joy is so full over this. I cannot fathom that He would have anything more or better to do with my life or our family than to walk us through this experience, use it to touch thousands of hearts, and show us His goodness so tangibly. But I know that He will yet do more with our lives! – because He is a God who does great things, who blesses sinners richly and redeems us to serve Him in His power.

“Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.” – Ephesians 3:20-21

“O Lord God, you have only begun to show your servant Your greatness and Your mighty hand. For what god is there in heaven or on earth who can do such works and mighty acts as Yours?” – Deuteronomy 3:24

If you made it through that novel, 😛 thank you again for praying for our family. It means so much to us!!

December 1, 2015 – Cora goes back to the hospital

I am sorry to report that Cora is not doing very well today. She woke up in the morning crying about head pain, and almost vomited several times. Those symptoms subsided, but her ability to walk has degraded again, back to the point she was at before she was hospitalized.

Dr. Orbach wants an MRI, so we are headed to the Boston Children’s ER now.

Please pray for the MRI to go well, for clear and favorable results – and for our peace of mind as well, especially Cora’s. She is already worn out from pain today after having about a dozen bandaids peeled off her body and having her hair almost completely combed out before we had to stop to leave for the ER. She’s about hit her limit of being messed with today, isn’t allowed to eat or drink because the MRI will be sedated, and I have no idea how she will react to being taken back to the hospital again…

– – –

Dr. Orbach came and discussed Cora with us and watched her walk and play for a bit. He decided not to order an MRI right now, since overall she looks like she’s doing well. Instead he decided to keep her overnight for supervision and see how she is tomorrow morning. Time to cozy in for another night at the hospital! (In all seriousness, though, poor Christopher and Cora! One blissful night at home in their own beds and now they’re back here.)

Cora has done okay, all things considered, although she had blood drawn and an IV put in, and that was no fun whatsoever. Thank you for praying for her today. Please pray she continues to do well and doesn’t have any more headaches or upset stomach episodes.

– – –

Cora’s arm is encased in an IV wrap again, and she is back at the hospital…but she is a happy, cheery girl tonight (what a blessing!), and any night this girl is happy and smiling is a good night for me right now! She made good friends with the night nurse, who gave her the special whiteboard as a prize after her evening injection. (Ahhh, she seems so much better just from having most of the tangle combed out of her hair! Haha.)

I am so glad I wrote up that long post last night. In many ways, writing is a last step in processing things for me. Having written that all out strengthened my soul for the setback of today too.

December 2, 2015 – Cora goes home again

I apologize for how long it took me to update you all today!

Cora is home again! They did not do an MRI, since she is doing fine now. (She has to have an MRI next week already to check how her brain is doing that far out from the procedure, so Dr. Orbach felt like it was excessive to order an MRI for right now too, since she wasn’t having any concerning symptoms anymore.)

Thank you all for praying!

December 5, 2015

Cora's smile/eyes, pre- and post-procedure

Cora’s smile/eyes, pre- and post-procedure

It’s been a quiet, happy week at home since bringing Cora home again on Wednesday. As I said in a personal Facebook status a few days ago:

“It makes my heart glad to see Cora bright-eyed, happy, and giggly again. She is a transformed girl! Because her symptoms came on gradually, I had no idea how deeply the AVF affected her personality. She is no longer constantly frustrated, weepy, slow, and sleepy-looking. Now she’s bouncy, always joking and singing, and suddenly she advanced in her vocabulary too! She is once again my ‘busy bee,’ a moniker that for a long time didn’t fit her anymore. What an absolute joy. Praise the Lord!”

We are watching her do things she couldn’t do anymore before the procedure: climb into her own chair at the table, laugh loudly, feed herself without making a disastrous mess, RUN(!!) and not constantly fall and hurt herself…things most 3 year olds can do but Cora lost the ability to do awhile ago. One great way to see the difference in photos is her smile – in this picture, the left two photos are from before the procedure. Most of the time she smiled with a big open mouth, like little babies do, and sometimes she smiled enough to show a dimple. On the right is her today, Christmas tree hunting – look at that enormous happy grin! (Also her eyes are much more open! I love seeing those big blue eyes fully open again. It remains to be seen how much the AVF affected her eyesight, but she seems to see much better; we are not using her glasses for now until we are sure of her prescription again.)

Having Cora home and healing is the best Christmas present ever. God is so good, so kind to us.

December 6, 2015

It seems like every time it looks like we’re out of the woods, the trees close in again… Today Cora has been complaining of head pain again – all day, off and on, as if she has an occasional stabbing pain that spikes and then subsides. She has her followup MRI tomorrow, so that’s good and soon, but the neurosurgeon on call advised us to bring her in to the ER again if she gets worse overnight. Please pray that her headache goes away, and that whatever’s causing it would not be serious, and that her MRI tomorrow shows that all is well.

Also…this feels a little “greedy” or ancillary as a prayer request, but I am supposed to fly across the country (solo, but with our youngest baby) next week to be in a dear friend’s wedding. The fact that we are still having concerning episodes like these makes me anxious to leave, as a mom! I would also love prayer that she is stable and healthy well in advance of this long-awaited trip, and that things work out smoothly.

Thank you!

December 7, 2015 – followup MRI day

Cora is still doing poorly this morning, and unfortunately she got up before the sun today and helped herself to some milk before we were awake to stop her! This means she cannot be sedated on schedule for the MRI. But I am sure Dr. Orbach will want a scan *today* because of her head pain. After playing phone ping-pong among various departments at the hospital, and watching her get more and more unhappy this morning, I have decided to just take her to the ER. I will continue to update this page today as able. Thank you for your continued prayers!

– – –

Cora’s finally in for the MRI, after a long day in the ER. Her headache has been very painful at times but at this point I think her main discomfort is hunger. I don’t know whether we will have results from the scan today.

If she hadn’t sneaked milk this morning, we would probably be home right now, having dinner as a family. But I’m sure God has a purpose in sending this long delay. I’m glad He has total control and is working everything out perfectly.

– – –

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Left: brain before procedure (the AVF is the big, central white blob) – Center: brain hours after the procedure – Right: brain at time of December 7th MRI

Dr. Orbach reviewed Cora’s MRI images and her brain looks GREAT! He said we can be done with the injected blood thinner she’s on (no more daily shots! Woohoo!!). She just has to keep taking a daily aspirin, and he will do an angiogram in 2-3 weeks to take a look at the actual blood flow. He sees no signs that her brain has been damaged from the procedure. And he let me see these awesome comparison images of her brain – check it out!!

They aren’t sure why she has a headache, but it’s possibly from the changes happening in her brain as the AVF shrinks.

Cora can finally eat and drink again after a whole day of fasting.

We are praising God for yet more good news about her healing!! What an exciting blessing after this long day!

December 8, 2015

A physical therapist came by today to assess Cora. He said to keep him posted on her recovery, but he thinks she won’t actually need PT at all, but will make a full recovery on her own as her brain returns to normal. So exciting!!

December 10, 2015

Cora is doing well today! I’m feeling much better about flying away for a week (especially after realizing I can always fly right back into Boston if I was suddenly needed here, unlikely as that is).

The visiting nurse came again to check on her and said she couldn’t imagine the doctors still needed a nurse to come by, since she looked like she was doing perfectly. So we are officially done with in-home nurse visits too. Her followup angiogram is scheduled for the 30th…until then I think we should be free of check-ups and trips to Boston, Lord willing!

I also emailed Dr. Orbach yesterday to explain that she is still having headaches. He said this isn’t uncommon in cases like hers, but usually these headaches are mild and respond well to a short course of medication. He prescribed prednisone to see if it helps. Pray that the side effects are minimal and that it gets rid of the headaches for good! Aside from that she acts mostly like a normal, happy 3 year old. The nurse today was astounded at her articulation and vocabulary…it’s thrilling to hear her speech clear and animated again!

December 17, 2015

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I am away on my trip (having fun!), but I keep in touch with the family via texting and FaceTime. Cora is doing really well! Christopher took her to the neurologist yesterday about her headaches, because Dr. Orbach thought she should be on some kind of long term medication (the prednisone did not end up helping). But Tylenol works just fine, so the neurologist said to keep giving her that as needed. And her headaches have been going away, too! Thank You, God!

She begged Daddy for hamburgers all week, so yesterday he took the kids out for a yummy burger dinner. She seemed to greatly enjoy it.

December 22, 2015

I’m happily home again with my babies! This morning I woke up to hear Cora chatting sweetly next to me, and was just astounded at her speech: so clear, strong, fast, and almost as advanced and articulate as our older son’s. After being away for a week, I can SEE the marked improvement in her. Such a joy!

December 25, 2015 – Christmas Day

“No more let sin and sorrows grow
Nor thorns infest the ground;
He comes to make His blessings flow
Far as the curse is found,
Far as the curse is found,
Far as, far as the curse is found!”

I rejoice this Christmas that Christ brings joy and peace to the darkest hearts, the bitterest circumstances, the most difficult situations – His blessings truly flow as far as sin and sorrow have gone, if we are seeking Him.

“For if, because of one man’s trespass, death reigned through that one man, much more will those who receive the abundance of grace and the free gift of righteousness reign in life through the one man Jesus Christ.” – Romans 5:17

Merry Christmas, everyone!!

December 28, 2015

Cora has her followup angiogram on Wednesday the 30th. We expect the AVF will be found very diminished and the blood flow will look good and healthy – please pray with us that that will be the case!(And pray her required fast before the anesthesia goes off without any hitches. 😉 )

December 30, 2015 – followup angiogram day

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Almost time for the angiogram! Assuming all goes well and smoothly, this will be a normal outpatient procedure. Cora is not thrilled to be back at the hospital again, but she is sweetly cooperative as always.

– – –

The angiogram is finally done! Cora is fine and it all went smoothly. But I have good news and not-so-good news.

The good news is that the big AVF is “done,” in Dr. Orbach’s words. It no longer poses any danger to her. Praise God!

The not-so-good news? Those smaller AVFs he saw before are NOT caused by the big one and have not gone away with it. They are actually a very complex structure, spread through more than one area of her brain – again, this is quite unusual, not something he is used to treating. These smaller AVFs don’t press on her brain like the other big one did (thankfully!), but they do pose a risk of bleeding, so they will probably need to be treated with embolization, surgery, radiation, or some combination of those things. He doesn’t know yet. Before he can formulate a plan he will need to do another angiogram specifically to study the small AVFs in depth (the angiograms have to end after a certain point because she’s so tiny and her body can only take so much of the contrast dye; otherwise he would have done all the imaging needed today). He will meet with me again to discuss everything further before we go home tonight.

I looked forward to today as the last big milestone of a multi-month-long ordeal, but having reached this “doorway,” I have found a longer road beyond, stretching into the distance with no end in sight yet. But God is still here! He has not left us, and He is still as strong and capable of upholding us and healing Cora as He has already *clearly* shown Himself to be. We have trusted Him with the big AVF and seen Him do marvelous things – we can trust Him with the little ones too. God never runs out of mercies! They are new every morning.

Please keep praying for our sweet girl! Thank you all.

December 31, 2015

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This is the blood flow in Cora’s brain from the angiogram images. (It looks like a cool, artsy tree!) See the atypical “knots” on the lower left side, the spot where it looks a little different? That’s where all the little AVFs are. They aren’t stunningly large like the big AVF was, but it’s a very complex network of vessels.

January 7, 2015

This update is mostly to say…there are not many new updates. 😛 Dr. Orbach is going to present Cora’s case at a conference at the end of January, to “the most senior people in the world,” he said. Until after that we won’t have any idea how things will proceed for treating her AVFs.

She had an ophthalmologist appointment this week, and we found that her eyesight has NOT changed following the procedure. She has strabismus (both eyes cross inward sometimes) and there’s no way to tell if it was caused by the AVF or something else, like eye strain from her farsightedness. Ideally it will correct itself, either with the use of glasses or as nerves damaged by the AVF heal over time. The trouble with strabismus is that a crossed eye sends the brain mixed signals; the brain learns to ignore these signals to avoid confusion, so over time it can lead to vision loss or the eyes not developing vision properly. Unfortunately (if it’s caused by the AVF) the longer it takes for something like this to heal, the more likely it is that permanent damage has been done. However, it often takes a good 6 months for the nerves to heal. So we’re praying that over the next few months, this eyesight issue will correct itself.

January 10, 2016

Over the last couple of days, we noticed that Cora is sometimes drooling again. We mentioned it by email to Dr. Orbach, who advised we watch her over the weekend and he would have his nurse practitioner call on Monday to check on her. It seems to us that in a lot of really subtle ways (her walk, her speech) she is no longer at her baseline, and has degraded a bit. So that is what we will have to tell the nurse tomorrow. We have no idea what this means, but we would appreciate prayer.

In church today our pastoral intern praised God for Cora’s healing thus far, and earnestly prayed that His power and mercy would be even more evident in these next hurdles as the doctors confer and plan and treat those little AVFs. Amen – please let that be so, Lord!

January 12, 2016

Dr. Orbach wants an MRI because of Cora’s drooling and other subtle changes, but I have yet to hear from the hospital about when they want that to happen.

I have this irrational fear that at some point the medical staff will get sick of us, stop taking Cora’s problems seriously, and start shunning us. Hahaha. I’m very thankful for the faithful, kind, persistent care of these medical professionals, who only dig in harder and search for answers harder when things get more complicated! I’m also thankful for all of you, who still follow Cora’s story and pray for her, even though her “exciting” crisis has turned into a long journey until who knows when. Thank you.

January 15, 2016

Cora has been doing well. The drooling seems to have stopped!  The closest opening they had for an MRI was the 26th(!), so they scheduled her for then and said they would ask Dr. Orbach if he wanted to squeeze her in sooner. When I didn’t hear from them for a few days after that, I got in contact with him this morning, myself. He was glad to hear she’s doing well, and said we should keep the appointment for the 26th, but will cancel that week if she’s still doing well.

– – –

Oooh! Neat news!

I suspected this was true, so I asked – Dr. Orbach is currently at the international neurointerventionalists’ conference. I asked if he would mind telling me what day he’ll present Cora’s case, because I knew many people would like to be in prayer for that. He said the clinical discussions at the conference start on Monday, and his best guess is that he’ll present Cora’s case on Monday afternoon, but he will let me know if that changes. (This conference is in France, so Monday afternoon there is Monday morning EST, etc.)

Please be in prayer for him and these other physicians from around the world as they discuss Cora’s case next week (and many other important, complicated cases!).

Thank you, prayer warriors!

January 17, 2016

Please be in prayer for tomorrow (Monday), when Dr. Orbach expects to present Cora’s case in a clinical discussion with doctors from around the globe. Pray that he gets valuable feedback, that he would be able to form a solid plan for treatment, and that Cora would continue to be safe and protected as her journey continues.

Personally I would LOVE to never have to hear my daughter’s doctor say “extremely risky” or “if she makes it through that…” again. That seems unlikely, given her complex condition and the fact that almost anything done in the brain is risky…but I can pray that some good, low-risk solutions are found for Cora! God has blessed us immensely through the hard, raw, on-edge times; He is good in any time, in any circumstances, even if he sends us back into the valley of the shadow of death again in the future. But I pray that won’t be the case.

“And whatever you ask in prayer, you will receive, if you have faith.” – Matthew 21:24

January 18, 2016

Dr. Orbach reports that the pediatric presentations have been rescheduled for Thursday. Sorry this prayer request for the conference is a “moving target.” Earnest prayer is never wasted, though!

January 28, 2016

Dr. Orbach emailed this evening. His plan for now is to do another angiogram, probably the second week of February. He will study the little AVFs in detail, using a micro-catheter to inject dye from both sides to get a really good idea of how the blood is flowing. There was debate at the conference as to whether the little ones were independent of the big one or not, so that’s still uncertain. Once he has more imaging, he can form a plan for treatment.

He also wants to do genetic testing for two conditions that can cause unusual AVFs: RASA1 mutation and HHT. (I am hoping she doesn’t have a genetic condition, because the odds are high other family members would have it too.)

Additionally, Cora had an appointment this morning with a geneticist and genetic counselor. We know she has albinism of some kind, because she has ocular albinism (OA). But it’s rare for girls to have the ocular kind and NOT have the oculocutaneous kind (OCA – including skin and hair…what people normally think of when they hear the word “albino”). So we want to know which kind she actually has. Long story short, the geneticist can’t tell based on examining her. She does not present as a typical case for either OA *or* OCA. (Always a medical enigma…hey, at least she’s consistent! 😀 She’s just special all around…our one of a kind sunshine girl. 🙂 )

So, the geneticist ALSO wants genetic testing, for *all* varieties of albinism, in case she has a rare kind that may include other health problems (for example, one is associated with hearing loss).

PLEASE PRAY:
– that the insurance will cover these genetic tests, which are very expensive and often hard to convince them to cover (even Dr. Orbach was concerned they might not cover the tests he wants!)
– that there would be solid answers
– that the results would be favorable, not indicating extensive problems for many other family members
– that the angiogram would be helpful in forming a solid plan for treatment

April 13, 2016

Dr. Orbach wants to move forward with another embolization to repair more of the AVFs. On Tuesday the 19th, we have a video conference scheduled with him to discuss it, so I don’t have much information yet, but we will keep you posted!

Also, we don’t know the results from the genetic tests he ordered yet, but the tests our geneticist wanted came back a few weeks ago! Cora has OCA type 2, a milder form of oculocutaneous albinism. So she is officially a beautiful albino baby. Thankfully this doesn’t mean too much for her health, other than a stronger than average need for sun protection.

April 19, 2016

Our video conference with Dr. Orbach went well this afternoon!

He wants to do the embolization within the next 4 months (I imagine scheduling will contact us soon to get it on the calendar). There’s not a lot of short-term risk from the AVF, but if we left it alone the risk of a bleed would increase over time, so he advises treatment in these kinds of cases.

If he goes in and find the AVF has shrunk, he’ll probably leave it be and just keep watching it. Otherwise he’ll proceed with the embolization. Cora will probably spend one night in the ICU and one in a regular room before going home (or two nights in ICU).

Thankfully this is a much lower-risk procedure than the other one was! It’s not “low risk,” necessarily – he called it “middle of the road” – but compared to the massive AVF we dealt with last November, this is much simpler. 🙂 Prayers are appreciated that the AVF won’t cause any problems before it’s treated, and that the upcoming procedure will go well.

April 25, 2016

It’s taken me awhile to figure out how to word this update. We still don’t fully know what it means for Cora or our family. But I’m going to take a crack at explaining it! 😛

We learned last week that results came back for the genetic tests Dr. Orbach ordered. It turns out that Cora has a mutation of a gene called “endoglin.” This is one of the genes involved in HHT (hereditary hemorrhagic telangiectasia), a genetic condition that causes bleeding problems and vascular malformations in various parts of the body. However, this isn’t the *normal* way this gene mutates. Cora has a really unusual mutation. (Go figure! This is Cora we’re talking about. Never normal. 😉 ) Dr. Orbach says we can consider her as “having” HHT.

This probably explains the complex vascular malformations in her brain. In addition to the brain, HHT can cause vascular malformations in the lungs, liver, and spine. So we need to screen other parts of Cora’s body for AVMs, which would need to be surgically removed before they could bleed and pose a danger to her.

In summary – Cora has a genetic condition that may cause other problems in addition to the AVFs we’ve already found in her brain. Other family members may also have this condition (which often goes undiagnosed), so we will probably need to test for that.

We aren’t worried at this point, really, but it is certainly discouraging news. We’d appreciate prayers for wisdom as we seek to understand her condition, and continued safety for Miss Cora. Thank you all! 🙂

P.S. I read this verse the day we found all this out, and it was a greatly comforting passage: 🙂

“The LORD is my chosen portion and my cup; you hold my lot. The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance. I bless the LORD who gives me counsel; in the night also my heart instructs me. I have set the LORD always before me; because he is at my right hand, I shall not be shaken.” – Psalm 16:5-8

May 9, 2016

Dr. Orbach emailed today – he wants to wait on scheduling the next embolization until we’ve screened Cora for pulmonary AVMs (which are a possibility due to her HHT). Cora has some screening tests scheduled on May 27th, so those are coming up in a few weeks. If she has a pulmonary AVM, it would increase the risk of treating the brain AVFs, and Dr. Orbach wants to wait until the risk is as low as it can possibly be before he treats them. Praise God for a doctor who is cautious and careful and looks at the long-term possibilities instead of being hasty!

Last Saturday the hospital had a family symposium about cerebral AVMs and VOGMs, a similar condition, and I was able to watch the live stream of the event. During the discussion panel Dr. Orbach spoke about how fast technology has developed, and how he can do things now that would have been impossible a mere 5 years ago, simply due to the advancement of medical tech. He said this also plays into his treatment plans – if a procedure is very high risk but not an emergency, sometimes he will hold off on purpose, for calculated reasons, because in a few years he can expect there to be some new technology to make the procedure safer! It’s amazing to see the brilliant minds God has given human beings, to achieve these rapid technological advances. And I am so grateful Cora was born here and now, so she can benefit from them.

May 12, 2016

Praising the Lord today!! 🙂 Cora saw the ophthalmologist again this morning, and her eye crossing has diminished by about 50%! That means it’s almost definitely caused by the AVF, and will probably continue to go away as her brain heals. Because crossed eyes like this can eventually result in blindness, this is very happy news – thank you so much to those who prayed for her eyes! 😀

May 27, 2016

I forgot to type up an update this morning, but we are currently at Boston Children’s Hospital having some tests done for pulmonary AVMs! Please pray for good, clear results.

– – –

Praise God and thank you for praying! – it looks like her heart and lungs are healthy and functioning well. 🙂 At this point the pulmonologist doesn’t think any further tests are needed, although she should be seen yearly for screenings.

Now Dr. Orbach should be able to go ahead and do the embolization he was planning to do in the next few months. 🙂

June 23, 2016

Cora’s next embolization has been scheduled for September 12th. That’s still a long way off, but I figured I’d put up an update. Please keep praying for her health and protection, and that the upcoming procedure would effectively fix more of the AVFs.

September 29, 2016

Dr. Orbach says the AVF looks the same – if anything, the blood flow is a tad slower, but it’s hard to tell. After getting a good look at it, he weighed the pros and cons and determined that treating it right now would be riskier than leaving it be, because her risk of a bleed is fairly low, but those veins are near important parts of the brain and there’s a definite risk to messing with them. Ultimately, treating today wouldn’t change her risk of a bleed much anyway, because she still has another area of the AVF that’s not treatable with current medical technology. He wants another scan in 9-12 months to see how the blood flow is doing then.

So it’s not bad news but not “good” news either. We’re just going to take her home and keep on keeping on. However, he did say that the only cases he’s seen where an AVF goes away on its own are in kids with HHT, like Cora. So it could shrink away on its own eventually. 🙂

It feels a little anti-climactic and disappointing to go home today without anything treated (after prepping for a hospital stay not once but twice now, haha), but praise God the AVF is not worse, might be a tad better, and that all’s gone well! 🙂 Keep praying that the recovery from the angiogram goes well and there are no complications. ^_^

I will continue to post updates here from the Facebook page if there is any new news. If you have been praying for Cora, thank you from the bottom of our hearts.

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3 Comments

  1. Love this page, friend. Love watching you go through this journey with your amazing faith!

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