MRI results...an update from Matt

It's been a roller coaster week and we wanted to briefly update everyone on Ava's status.
 
One week ago today, I took Ava to the ER because she was too sleepy to eat, presumably because her seizure medication doses were so high that they were shutting down her brain. We thought she would be admitted, get rehydrated, have her medication doses lowered and she would soon regain some wakefulness.  However, as soon as her medications were scaled back, her seizures returned but although she improved in her ability to eat a little bit, she remained much sleepier than expected.
 
I pushed the team to repeat some of her testing, including the MRI of her brain.  She had that yesterday, and much to everyones' surprise and dismay, the results are dismal.  In addition to showing widespread malformation of the brain itself, several important regions appear to have been taken over by tumor (most likely a glioma).  The most important region is the upper brainstem, the region responsible for controlling wakefulness, eye movements, and the ability to suck.  It's now clear why she hasn't been waking up like we'd hoped.  What isn't clear is what this means for Ava.  To help her get nutrition while we figure things out, we had a gastrostomy tube placed today.  This tube goes through the wall of her abdomen and into her stomach to allow us to put her formula directly in when she can't drink it.  She had a tough time with the breathing tube and is being kept in the ICU overnight to watch her respiratory status.
 
Next week, she will undergo a brain biopsy to confirm the diagnosis, which will hopefully give us more information about whether treatment is even an option.  If they are right about it being a glioma, there is little they can do.  Fortunately, we believe in a God who can do all things! 

Ava's Recovering

Ava's procedures went smoothly. She's in recovery and will be transferred to the PICU as soon as they have a room for her. This morning, we were told that the surgeons would have time during the procedure to give Ava a g-tube as well. This was on the schedule for next week, but we were grateful it could be combined with this sedation and spare Ava another trip to the OR.

Though we remain in the fire, God continues to send us angels to stand with us and remind us He is very much with us right now.

He continues to say, BE STILL AND KNOW THAT I AM GOD.

And He is.

We found out yesterday that a dear woman who has been praying for Ava for some time will be travelling on the same flight to Dallas with us on Saturday! Amazing!! For 3 1/2 hours I will have an angel to help me care for my girls!! And as an added bonus, after meeting her momentarily, Elizabeth crawled right up in her lap and practically snuggled with her! What a huge relief. For those of you who've been praying for that, who knew how sick I was at the thought of flying alone again, THANK YOU. God has answered our prayers.

So we continue to hold up our sweet angel and thank you for every prayer you offer up on our behalf.

Tests, procedures and tomorrow.

Yesterday, Ava was hooked up for another round of video EEG monitoring and it was confirmed that she is still having many "sub-clinical" (not visible to the watchful eye) seizures. So today, Ava was sedated to undergo an MRI to provide us with some answers about her epilepsy and guide our treatment decisions. She came through the procedure smoothly and the findings will be discussed tomorrow (Friday) morning at 8am during a meeting with all of Ava's neurologists and her neurosurgeon. The initial information we have is not good. But we will wait to communicate more until we have a grasp of the whole picture...at least the only picture the medical team can give us.

One thing was certainly confirmed during the process of sedating her for her MRI: Ava has run out of IV sites, and needs a Broviac catheter. This is a central line inserted into a large vein leading to her heart. It will be a permanent port in her chest which will give us constant access to blood for labs, and a stable place to deliver medications.

So tomorrow Ava will have another procedure to insert the port. She's an add-on case so we don't know what time she'll be taken back. Matt will keep vigil as he has day and night since last Friday. Meanwhile, the girls and I will spend our last day in California and prepare to fly back to St. Louis on Saturday.

Please pray for our little one. For wellness for each of our girls. For rest for all our children and their weary parents. For a smooth procedure. For wisdom and insight for Ava's doctors. For our hearts to be prepared for what is ahead.

Ava's Seizures

Ava's still in the hospital where she's continuing to drift between seizing almost continuously, and being too sedated to eat or take her medications by mouth. No one has any new ideas, and Matt and I are discouraged and frustrated with the lack or an apparent path. She is completely incapacitated. She can't develop, respond to us, engage with us or even get comfortable for any length of time.

She's getting rescue meds (fast acting drugs to stop her seizures because they won't stop on their own) multiple times a day. Her head IV is still working, but usually after 3-4 days in the hospital, her IVs quit working because they clot off. So it's likely they'll need a new site soon, and so far, she's been a difficult one to stick. There's been talk about putting in a port, which would be a little reservoir under her skin that would give them constant access to the blood they need to check her med levels, but that doesn't solve the IV problem.

It is terribly stressful to watch our sweet girl suffer and not be able to do anything about it. Ultimately, Ava continues to need a miracle.

The big girls and I are still in California, and we're being loved on and distracted by our amazingly wonderful family. I'll post a few pictures to the blog as I'm able, but wanted to get this out urgently.

Thank you for your prayers.

We hope you had a truly joyful Christmas.

Merry Christmas from California

Ava's in the ER

Matt took her in after she had another prolonged seizure this morning. She resting with Daddy now, after getting an IV in the only location they could find a good vein...her head. Matt is with her of course, and I know he's bracing itself for the possibility of an admission over Christmas...if you're local and available, I'm sure he'd appreciate a text, call, or a visitor with caffeine in hand. I'll keep you posted.

A Change of Plans

After our busy weekend in and out of the hospital, and some long discussions, Matt and I decided I would head to California with the three big girls and he would remain in St. Louis with Ava for Christmas! Ava has continued to have clusters of small seizures throughout the week, as if to confirm our decision to keep her home. In an effort to stop them, we've increased her medications, and are now struggling to get her to drink her bottle because she's completely sedated, and unable to wake up to eat. My brain is ready to sleep thrugh a few meals myself, so I'll head to bed and post more tomorrow. Of course, we'd appreciate your continued prayers. Though unconventional, we're thankful that we both have peace about spending this Christmas apart.

Together again

Ava's home and once again, we have all our girls under one roof. Her
seizures are stable and we're hoping the medication increases will
keep her in a quiet zone. We're also praying she doesn't catch the
cold that the rest of the girls have, since illness can be a trigger
for more seizures. Thank you for your prayers and support! Goodnight.

Hope

For years now I've asked God to show me what hope looks like. To please, oh please give me something to do that feels like hope when my life is being buffeted by sorrow and hard and disappointment and the future looks like more of the same.

Last week, while Ava was in the hospital, (ironically, the evening after i posted about God's recent provision) I listened to a sermon on the power of thankfulness by Bill Johnson and God used his words to give me handles for what hope is right now.

Speaking about the account of Jesus thanking the Father before feeding the 5000 in John 6, Pastor Johnson said,

"Sometimes, when the need is so great, and God's provision is incremental, thankfulness is actually an act of faith."

Tonight, I am thankful for my family, separated as we are. Four amazing little girls, one incredible husband. Miss M is with our sleeping ones, and i'm here with Ava while Matt catches up at work for a few hours. Ava's seizures are, for now, quiet, and she's sleeping peacefully. We are not where we want to be, but God is taking care of us here. My hope is thankfulness as an act of faith.

Ava will stay overnight in the hospital to ensure her med levels remain as high as they need to be in order to keep her from seizing. Our plans for a California Christmas seem all but impossible. But in eight days, regardless of where we are, our little family will celebrate the reality that the One who created us, came to live with us. Christmas is coming and because He came, we still have hope!

Ava Bean

Ava left the house in an ambulance this afternoon. Her clusters over the last week have responded to the recue medications we've given her at home, but today her seizure persisted despite two different medications and we had to call an ambulance. This is disappointing, especially since she's been acting perkier these past few days. We've seen her eyes more than we have in the past two months! The girls are happy at home with Ms. Marcia and Miss M comes back tonight. Thanks for your prayers. We'll keep you posted.

We're still at home, but Ava continues to have seizures and her seizures continue to change a bit, so we're still scrambling to find the right medication cocktail. We are hanging on to our dream of going to my (Sara's) family gathering in California for Christmas, but are aware that it will take a miracle. Oh, how we would love a miracle right now.

Out the door!

And we'll sleep in our own beds tonight!

EEG results

Ava's video EEG was very helpful.

*It confirms that much of what Matt and I are calling seizures or seizure activity are, in fact, seizures.
*It also revealed that our sweet Ava Bean is having many more seizures that are going undetected.
*This allows us to make more informed choices about medication and possible future dietary changes.

After a 2 1/2 hour meeting with Ava's epileptologist, we have a bit of a road map for how we'll try to get ahead of and control her seizures, and we also have a better idea of the developing picture of Ava's brain development. Today we'll talk with Genetics and she'll get a lumbar puncture as well as some other blood tests. We'd thought we might go home tonight, but she had a pretty busy night and morning as far as seizures go, so that may or may not get to happen.

Of course no one knows for sure what the future holds. And honestly, there's mercy in not having the whole picture revealed to us now. However, we do know that right now, Ava's brain needs to "cool off" so she can develop. At this point, she pretty much like a newborn developmentally, so she deserves some seizure-free time to see what her brain can do when it's left alone for a while. We so appreciate your prayers that this would happen sooner than later.

--
www.msharms.blogspot.com

Does this hat make my cheeks look big??

Um, could she be any cuter? Maybe only if she'd give us a peek at those beautiful blue eyes...but alas, too much phenobarbital makes it hard to pose for the camera!

Ava's doing exactly what we'd hoped. She's had a number of episodes we were hoping to capture on video EEG, so we're optimistic that we'll get a bit more clarity for moving forward. It is weird to feel thankful that she's having seizures, but that's where we find ourselves....it gives a new perspective to, "rejoice always!"

Big day ahead for Ava

I just love this picture of Matt reading bedtime stories with the girls a few weeks ago. What an amazing daddy he is. It is such a comfort to know God gave our daughters the perfect father to watch over their bodies, care for their hearts, develop their minds, and to reflect God's love for them on every single day.

Today is a big day for Ava. After a week of sometimes clear and often not-so-clear seizure activity, Ava will be hooked up to an EEG video monitor for the next 24 hours to allow us to capture information about what her brain is doing when she looks like she's having a seizure. We need as much precise information as possible as we make decisions about new medications and weigh their side effects and her need to be awake and develping. At this point, our precious angel is spending too much time in seizure-land.

Miss M is back, so the girls at home are well cared for.  We so appreciate your prayers.

--
www.msharms.blogspot.com

Provision

This past year has been such a long road with near constant struggle and we've ached for someone to just rescue us. To come and take all the hurt and hard parts away. And while God has taken care of us, through the help of many, we've often felt isolated. It's as if we are floating in the middle of the ocean and God is throwing us life preservers, but we aren't any closer to land. Disappointment lurks everywhere we turn. Probably like the israelites...wandering in the dessert, yet not entirely comforted by miracle shoe leather and breakfast on their doorstep, because they are, after all, still killing scorpions and looking for shade.

I'm so like them.

I don't want to have to trust. Every. Single. Day.

In the past we've had friends who've been our go-to people in a crisis...always jumping in, always ready to "activate the meal train". And there has been tremendous comfort in that. I appreciate having a bunch of faces to look at, friends who understand our life, anticipate ways to help and can be as available as their hearts desire. But one at a time so many of our dear friends have become long-distance companions. Others have gone through major life, job or health changes and we find ourselves without a cohesive sense of community, in the very period when we are the least capable of pursuing the very relationships we need.

And God whispers, "I AM. I will be your source. I will provide."

And He does. Like manna. Every day.

A new face at church. We both need "family" in town. A new friendship.

A young woman who needs the perfect job. Who knew in our mess we'd be perfect for anyone?? We are. And she is perfect for us.

A neighbor who rakes our leaves. And friends of friends take their Saturday to work on our yard and house projects.

Friends pick up birthday presents, bake a cake, research thanksgiving meals to-go, hold Ava, bring meals, send gift cards, money, emails and texts filled with encouraging scripture, and every day pray for and encourage us.

On one day alone, a colleague surprises us with a thanksgiving feast and teachers from Elizabeth's school give us a gift card, a beautiful bouquet, gorgeous specialty pumpkins for our porch and and notes for Elizabeth who's missed almost two weeks of school. Thanksgiving. Delivered.

Every day. "What is it?" We ask. Manna. This new kind of community. The only "problem?" None of these people know one another. They are "randomly inspired," wonderfully, generous souls who aren't on a checklist or a calendar. We can't arrange for it, organize it, or even anticipate it really, more than to simply know, somehow, God will provide. So our choice is to wait every day for God's provision, trust it will come, and if it doesn't look like it did yesterday, or doesn't look like what we need today, trust that it will be enough.

And when our "help" is sick or unavailable, or our much anticipated (desperately longed for!) visit from grandparents is delayed by a day (due to weather?!?) our task is to press into trust. To lay down our feelings of disappointment and entitlement because, "our life is hard enough already!" and trust that today's manna will fill our bellies and for this and much, much more, we have reason to be thankful.

For breakfast delivered by a colleague

A timely email from a friend to shake me from my trap of self-pity and remind me of the Truth. His mercies are all around me.

An excellent overnight nurse who responded quickly to Ava's new round of seizures.

A private room at the hospital & three healthy girls at home

Praying parents, and family and friends who remember us, inspire, comfort and encourage us.

A new Christmas album...cheery songs reminding me of the Hope we have.

You. Your prayers. Your friendship. Our manna.

Not there yet...

Ava's continuing to have breakthrough seizures, so we're obviously not able to go home yet. She's had a good day otherwise, but we need to get ahead of these seizures. Our doctor is not eager to begin a third medication yet. Ultimately, Ava's moving further into the "hard to control epilepsy" category, and the more meds we add, the less likely they are to work. Thank you for your prayers.

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.

iPad Love

Prayers for Ava...and the rest of us!

We're still here, we're still alive, but we still need your prayers!

Ava's back in the hospital tonight after having an increasing number of "breakthrough seizures" this week. She must like the Friday night menu at Children's Hospital, because this seems to be her favorite night for admissions! Perhaps she knows it's a one way ticket to a night with Daddy.

Following our discharge last week, she's been seizure free, but pretty sedated. A few days ago, she started to perk up, and that's when the small seizures began. Last night she had a number of weird "seizure-like" episodes, and because we weren't convinced they were the real thing, Matt and I took turns sitting up with her all night watching and praying. Today it became clear that we needed IV doses of her medications to properly control these episodes, which are most likely seizures. So here we go again!

Praise God~
*Ava has a brilliant neurologist Daddy. Between my mama's intuition and his medical acumen, we're a great team in caring for our complex little angels.
*after THREE rounds of antibiotics, Elizabeth, Hannah Mae and I (Sara) are all mostly well from our ear infections and colds. Matt and Ruby are also finally well, having avoided the antibiotic route, and Ava never caught our germs!
*My parents' visit and Miss M's hard work this week allowed us to catch up on a bunch of things around the house and we head into the weekend with a shorter to-do-list hanging over our heads!

Please pray for~
*Wisdom for Ava's Dr.s...to better understand and treat her seizure activity
*Sleep and wellness for ALL of the Harms tonight. We're sick and tired of being sick and tired, and after the month we've had could sure use a break from illness. Having healthy girls also gives us much more flexibility to bring them to the hospital when we need to.
*Strength and stamina for Matt and I. My parents visit provided us with a lot of encouragement and a "shot in the arm" so to speak. Now we've got a race to run and we need the endurance to do it.
*Matt's Dad, who is also in the hospital tonight. His cancer treatments have left him very vulnerable to infection so he's getting antibiotics while we wait to see what exactly is causing his symptoms. They are far away in California, and obviously Matt carries his dad's health concerns with him always.

Much love, and gratitude for sticking with us through yet another twist in the road!