It Takes A Village

Last week one of Ava's therapists commented on my tidy house, and I laughed when I told her, I can't take any credit for it! I put every bit of energy into caring for the well-being of my husband and daughters...and the rest? Well, we are so NOT doing our life alone. It's truly taking a village.

Earlier in the week, I'd arranged with a gal from church (we'll call her "Friend 1") to help me take the three younger girls to the pediatrician for a long overdue check-up. At 8am, I received a text from Friend 2 asking if she could run errands for me. I happily emailed her my grocery list. At 9am, Friend 1 arrived to help schlep the girls into the car. We rocked the doctor visit, and were on our way home...a mere 2 1/2 hours later. We arrived home to find Friend 3 dropping off dinner for us, so she joined us around the lunch table. Moments later Friend 4 arrived to deliver a beautiful necklace, made by yet another friend who I've never met, with Ava's name and her fingerprints on little charms.

While we were passing around the necklace, Friend 2 arrived with groceries, including a special chocolate treat for me! Later that evening, Friend 5 picked up a prescription for us, while Friend 6 arrived with play jewelry and cupcakes to have a tea party with the big girls.

Six friends helped to make one day in the life of the Harms family possible. 

On another afternoon, Miss M handed off the girls to Friend 7 while I was at yet another doctor appointment and Friend 8 dropped off dinner to feed my family so I didn't have to stress when I got home late.

When I asked her to, Friend 9 went shopping on a broken foot, and brought every plaster impression kit she could find, so we could capture Ava's precious hand and footprints.

Our pastors call and visit to encourage and pray with us. Ava's nurse brings me caffeine when she arrives for her weekly in-home assessment. Friend 10 comes on a moments notice to give us an extra set of hands.  Friend 11 picks up Elizabeth from school in a pinch. Friend 12 delivered flowers and handmade treats from her daughters for my birthday. Friend 13 does my online shopping, and along with Friend 14 is my acting "administrative counsel", letting me use her brain instead of mine for problem solving all sorts of things. Friends photograph our children and film our family moments, providing us with treasured memories to keep forever.

Friends bless me with birthday conversation and yummy desserts and ambush Matt with a lunch, drag him off to a movie, and keep him going on his weekly runs. Friends leave their children with their husbands and in-laws, drive seven hours with big pregnant bellies and haul their three kids across the state lines to come and be real-time help. And still others are just waiting for the go-head.

Mrs. R is Elizabeth's angel at school, teaming with her wonderful teacher to make school a fun and safe place for our sweet girl. My sister has four young girls and a busy life, yet calls me every single day.

Grandmothers hop on planes with a moments notice to come help while Grandfathers fix faucets, repair windows, paint molding and help build garden boxes.  Friends and family call, pray, cry, laugh, send notes and gifts to encourage us, bless the girls with treats and hugs, hold Ava, do our dishes and fold our laundry. All-told, friends and family have given us thousands of dollars to help us hire full-time help. People we've never met run errands, fix our computer, shovel our sidewalk when it snows and mail our daughters notes of encouragement.  

We call this our pile o' love. It is evidence of meals that have been lovingly prepared for us week after week. And these are just the dishes that weren't disposable!

I could go on and on. Yesterday friend took the middle girls on a play date much of the day so I could have quiet snuggle time with Ava, get some rest AND a shower. This morning a friend brought her kids over to play, and folded my laundry. Tonight a friend showed up to help with dinner clean-up. Simply amazing. 

We cannot possibly list every person who has given of their time, energy or finances to support us in the past six years, but please know, we have been blessed by each act of kindness. We could spend a year writing thank you notes, and still have more gratitude to express. We are being carried, and helped, supported and served many moments of every day and it's possibly the kindest mercy Elizabeth and Ava have given us. They have drawn people into our lives and they...YOU...are loving us so beautifully.

Every time you cross my mind, I break out in exclamations of thanks to God.

Philippians 1:3 (The Message)

An Anniversary of Sorts

About a year ago, I took a short break from my bed rest and sat through the worship time at our church's Easter Service. I asked God to heal me, and He did. The clot that was endangering my pregnancy and our 21 week old baby resolved and I knew in that moment that God had answered my prayers.

Following such a miracle, the year that followed has been so very different than I imagined it would be. Hope and heartache have been intermingled. I truly believed I was completely healed and my pregnancy would soon become "normal". Instead what followed was more bleeding, preterm labor, hospitalizations and eventually the delivery of our little angel at 24 weeks and 5 days. Ava was large and healthy for a micro-premie. She was "perfect" in every way. Then, she wasn't. Her hydrocephalus was a terrible shock. Her diagnosis with Alexander's disease was another blow. I am no closer to understanding the mystery of prayer or the miracle of healing, but I am amazed by how peaceful we feel today. And more and more I am understanding the reason for this peace.

I trust God's heart. Finally.

I don't understand why things seemed to resolve, only to get worse. I don't understand why any of this is happening. But the mercy of this moment is, I don't have to. I don't need to. In my best moments, I believe God is guiding this response and enabling our trust, and will--if it is required--give us more faith than we already have. Faith that would move us from knowing He can to knowing He will heal our little one. And so I simply stay here.

Be still and know that I am God.

God, you alone are God. You do all things well. Your ways are higher than my ways. There is none like you in all the earth. You ARE at work and will redeem all things and work them together for our good. You are behind and before us. And you are gently leading us.

Ava Sleeps

Ava is 10 months old. She is beautiful.

Her chubby cheeks are kissable.

Her hair has a sweet curl that compels us to rub her head at every opportunity. Her breathing is raspy at times, which is a relief, since it means she's resting, breathing and still with us.

Her sisters bring her their "kiki's" and dollies and sing sweet songs to her. She sits with us most of the day, and sleeps near us at night.

We snuggle her whenever we have the urge. And through it all, she sleeps.

We live for the moments when she opens her eyes ever so slightly and we can pour into them all the love and affection and adoration we have for her.

These moments are fewer lately. And we treasure them all the more.

Peaceful days

We've been in a bubble these past few weeks, and that's been made possible by Ava's stability on her steroids. Since we maximized the beneifit, and the risks of staying on them are many, we're begining a long, slow taper, which, if all goes as planned, means she'll be finished with steroids the day after she turns one on May 24th. She is not having seizures yet, but it's expected that her seizures could start anytime, since the steroids have an anti-seizure effect, and now we're weaning her off of them.

Her breathing has become more labored at times, and that too is to be expected because of the problems in her brain. Needless to say, we're trying to ride the fine line between hovering over her all day long, and enjoying the peaceful days while we have them. 

We continue to be blessed by family and dear friends who are coming to visit, encourage us and love on sweet Ava Bean. After Grandma Harms left, my dear friend arrived with her daughter, who is Ruby's bosom buddy! and while Matt took advantage of the opportunity to work his tail off, the 7 of us girlies and her baby girl-bun-in-the-oven had a sweet time just being together, cuddling, reading books and playing in the backyard. This evening Kristen left and my parents arrived in time to celebrate my Dad's birthday tomorrow. We're so looking forward to a few more days of family time. Each person who has come to visit has blessed us and in a very important way, borne witness to Ava's precious life. We can't express just how much their visits have meant to us. We also know we're able to fully enjoy this time together because of all the friends who are running errands, making meals and continuing to help us keep our boat afloat. Thank you so very much. You are blessing us tremendously. 

26.2

It has been one week since we confirmed Ava's diagnosis and then increased her dose of steroids to try get a little more awake time with her each day.  We haven't seen the significant improvement we'd hoped for, but her breathing has been stable and she seems comfortable.  Because of that, we've been able to take advantage of Elizabeth's Spring Break to savor some togetherness.

We've managed to fit in some wonderful times together at the zoo,

 

feeding the ducks in Tower Grove Park,

 

 

 

feeding the fish at the Botanical Gardens,

 

 

 

...and picking out a new stash of books from the library. On the heels of all that activity, we're all completely worn out.  Last night it took an hour for me to make 3 tuna fish sandwiches for the girls! Clearly we're not firing on all cylinders.

This morning, a friend gave me a helpful picture to describe this season of our lives- we're competing in a triathlon (someone got picky about the term so we compromised by grouping events to keep from having to call it a "dexathalon"!).  We finished the swim leg (months of bed-rest and then 3 months in NICU).  The cycling leg is over now too (hydrocephalus, shunt failure requiring surgery and the hard-to-treat epilepsy that kept us in the hospital most of the fall and winter).  Now we're running the marathon, which started when Matt's dad passed away suddenly and we learned of Ava's genetic diagnosis and its prognosis...and there are still many miles yet to be run.

 

Each leg of the race is different, requiring different muscles, new energy, and new skills.  There's also a painful transition between each leg, when our bodies and minds are switching gears, shedding the experiences of the previous moment, and embracing the tough road ahead.

Right now we mostly feel awkward.

 

We're searching for our rhythm and struggling to pace ourselves because, in contrast to the 26.2 miles of a marathon, we have no idea how long this leg of the race will be.  And honestly, we're not even exactly sure which course the race is taking.  Is it the low lying flat course of a complete healing? Or is it the grueling mountain run with peaks and valleys that will end with Ava's home-going?

We're running.  There's no turning back.

And in many ways we're running blind. Except that we have a Guide who is daily ahead of us, calling us to follow Him.

Without a map of the course, this season is full of tension...desires and needs, hopes and realities each pulling us in a different direction. And while we ARE experiencing the grace of God, moment by moment, some moments feel more grace-filled than others. Some moments look like quality time with my girls because Miss M is folding laundry and a blessed soul has signed up to bring dinner. Other moments look like tears on the way to the grocery store because I have to get away because savoring each and every second of each and every day is...exhausting.

My brain simply can't hold onto the reality that my baby is dying and I have the choice to spend my time doing anything I want...so how can I put her down? or walk away? or take a break when I don't know how many moments I'll have?

 

How do we grieve Ava's condition which has robbed her of development and the ability to interact with us, and still celebrate her life?

How do we live fully in the moment, enjoying every day and still give ourselves permission to take the space we need, let off steam, and even distract ourselves without feeling guilty?

How do we work, parent, and live, so close to the veil that separates life end death? How do we pray with every breath for a miracle, and still release Ava into the hands of the one who formed her, for His will to be done in her life?

And how do we teach our daughters about the joys and delights of heaven, where their beloved Grandpa and precious cousins are waiting, and then tell them we're not ready to let any of them go there?

We can't answer these questions. But God hasn't left us alone with them. Daily we need His grace to hang on in the in-between. He has promised to send us a Helper. So we trust He is with us. And when we feel like we might split in two, He is here. A friend makes space to listen and encourage. My sister cares for my heart with her words and her prayers. A friend hauls Matt away for a mid-day break. A text, a card, a comment, an email, and a voice-mail bring encouragement and solidarity. Cookies from sweet neighbors. Packages from Angels to bless the girls. A friend to sit with Ava so we can share a meal with our big girls with a little less distraction. He is using you to care for us. 

And while we often feel we're stumbling along, we know He is keeping our feet on the path and making the path before us straight.

One mile at a time.

I lift up my eyes to the mountains—
  where does my help come from?  

 My help comes from the LORD,
   the Maker of heaven and earth.

 He will not let your foot slip—
   he who watches over you will not slumber; 
indeed, he who watches over Israel
   will neither slumber nor sleep.
 The LORD watches over you—
   the LORD is your shade at your right hand;
the sun will not harm you by day,
   nor the moon by night. 
 The LORD will keep you from all harm—
   he will watch over your life;
the LORD will watch over your coming and going
   both now and forevermore. 
Psalm 121

More Manna

I never tire of the manna metaphor.

God continues to amaze me with his willingness to provide for each and every twist and turn on our journey, exactly when we need it. I was heartbroken, but prepared to stay in Missouri with our daughters while Matt organized and attended his Dad's memorial service on Saturday. Then last weekend Matt and I began to pray about the possibility of me going. It would take a perfect set-up: my mom available to care for the girls, a nurse to care for Ava, 24/7, Ava to remain seizure-free and stable without any deterioration in her breathing, and PEACE for my mama's heart to leave my girls at home.

God has provided all of these things and more: My mom is here, hurray! A nurse-friend (she's so much more than that) has generously offered to come stay with Ava all weekend...and her family is flexing to allow her to bless us. One of Ava's NICU nurses offered a meal for Friday night. We've gotten many offers of help to spell my mom and our nurse friend. While Hannah is just getting sick, it doesn't appear to be as severe, and the oldest girls, my mom, Miss M and I are all on the mend. And through all of the crazy illness, Ava has remained healthy. She has been seizure-free, and is even awake more each day (see those eyes?).

Lastly, and most importantly, Matt and I have peace. Not particularly because I feel good about leaving the girls...My heart is still torn about that. (I am a mom after all!) Yet I know, because I've seen over and over:

If God is making a way, He will bring peace. 

He has opened up the way for me to go. I'm humbled at the army of people who are helping make it possible. And I am trusting He has perfect provision for every single one of us.

What grace.

So far...Ava Loves Steroids!

Ava's been doing well since coming home. While her sisters, her parents and her nanny have been dropping like flies around her, she is still acting well, so keep the prayers coming! In addition, she has not had any seizures, she's taking all of her daytime feedings by mouth and her breathing has completely normalized. Because she got everyone worked up, she got to bring home two new machines with her from the hospital. She has been wearing the apnea monitor (at night) and pulse oxometer (night & naps) but so far hasn't set off any alarms!

We remain on quarantine, so Mom (thank God she's here!) and I do costume changes many times a day in order to keep the girls germs away. The checker at the grocery store must have thought I was preparing for biochemical warfare with all the sterile gloves, masks, and bleach products I bought today. While she was freaked out at first, Elizabeth is finally comfortable with me wearing a mask, so let's hope it all works!

Ava is definitely still sleeping a great deal but does show us her eyes at least a few times a day for 30 minutes or so. I didn't get a weight today, but I imagine she's gaining since she has only had one episode of vomiting since coming home. All in all, it's a good report!

A touching story from today: Since one of our pastors recently broke his foot, Ruby and I were talking about how difficult that must be for his family. We brainstormed about all the ways our Daddy is helpful around the house now, but couldn't be if he had broken his foot. Ruby looked up at me and said, "It would be ok mama, because Granna would just come stay with us to help us out!" apparently she has the best grandmas in the world and their willingness to swoop in during a crisis is simply a matter of fact. What a blessing.

Matt is still recovering from this bug, but is blessed to be able to be a help to his mom during this time. His brother was there and left, and his two other siblings will arrive this week. Everyone will gather on Saturday, March 3rd, to honor his dad with a memorial service at their home church, Abundant Life Christian Fellowship. Sid Harms was a man truly worthy of the honor he will receive. It was my privilege and great blessing to call him Dad.

Thank you for your continues prayers, emails, words of encouragement during this time. We feel so very loved.

Ava's back in the Hospital

Ava has been having a more difficult time breathing over the last few weeks, and things seemed to get worse tonight.  A few hours ago, we called an ambulance and she'll be admitted to the hospital tonight and probably for the next few days as we try to grapple with her deteriorating condition. Matt's with her overnight, and I'll swap with him so he can work tomorrow. I have no more words. Please pray.

Ava's MRI Results and a Mini Neurology Class

Ava came through her MRI beautifully. She managed to undergo sedation without needing a breathing tube, and that made her recovery much, much faster. Isn't she the sweetest little Valentine?

Immediately after her procedure, we met with our Neurosurgeon and Neurologist to go over the results. This was a difficult meeting because the results are heartbreaking. No one really understands what is happening in Ava's brain, or what it means. They don't understand why she's declining or know if it will continue. We do know what we told Ruby and Elizabeth this evening: that Ava's brain is very sick, and getting sicker, and we need God to do a miracle. In the mean time, we are trusting God for wisdom about how to best care for our sweet Ava.

Because the results were so confounding to the team, until now, we haven't laid out all the details. But the time has come to give you more details, because things are getting more complicated. To put today's results in context, Matt's going to take over and try to give you a clearer picture of the results of Ava's previous MRI and the subsequent brain biopsy results. So put on your thinking caps because this is going to get very technical! But if you can hang in there, know that you are blessing us by getting the scoop so we don't have to rehash all the details in person over and over again.

*****

Based on the previous MRI and biopsy, we know there are four primary problems in Ava's brain. Unfortunately, most of these problems have progressed based on today's MRI. Going forward, keep in mind that on an MRI scan, abnormalities can be revealed either by the color ("signal") seen or the by the shapes/structure seen.

1. Ava's deep brain structures and the areas surrounding her ventricles show "enhancement" when a contrast material is given by IV. "Enhancement" occurs anytime blood vessels are leaky and the contrast material leaks out into the brain. "Enhancement" is typically a sign of infection, inflammation or tumor. Because she's not showing signs of infection and her biopsy didn't show clear tumor cells, inflammation is the most likely culprit. However, none of the doctors or radiologists here have ever seen this pattern, so none of them can even venture a guess as to what might be inciting the inflammation.

Today's MRI showed that every area of abnormal bright signal is significantly brighter, and that new areas are now involved. An especially problematic question remains: if this is inflammation, is it the primary cause of her problems and decline, or a helpful part of the body's response to whatever it is that's going on?

2. On her prior scans, the areas surrounding the ventricles have been too bright even when contrast material has not been given. Often, when this is seen in a kid Ava's age, it is due to a lack of oxygen at some point, usually from birth trauma/asphyxia. When that's the cause, the involved brain tissue dies and is reabsorbed over several weeks, leaving empty space where it once was. Although the area around Ava's ventricles have been too bright in a similar pattern, the brain tissue had been hanging in there and NOT disappearing. This certainly means that the areas weren't injured by lack of oxygen, but what was injuring them was unclear.

Today's MRI suggested that the disappearing has begun. It seemed to indicate the the damaging force has been present strongly enough and for long enough that these central regions of the brain have begun dying off and shrinking.

3. In addition to all the color/signal abnormalities, Ava's brain also shows structural/shape problems. First, the same areas that have the "enhancement" appear too "full." Not quite like a tumor or a mass, but bigger than they should be for her age. This could be equivalent to swelling from the inflammation, or it could be because of tumor-like cells infiltrating between the normal cells. The biopsy was supposed to help figure that out. It showed abnormal "astrocytes," but the pathologists could not agree if they looked tumorous or not (the vote for tumorous was 3 of 5). Astrocytes are the nurse cells of the brain and they are supposed to live in and around the neurons to help keep them well-fed and happy. On Ava's biopsy, they were too numerous and appeared filled with abnormal clumps of protein.

On today's MRI, the enlarged areas did not appear to have enlarged very much. Everyone is taking this as a sign that the abnormal astrocytes/nurse cells many not be as tumorous as some thought.

4. Also related to brain shape/structure is the fact that part of Ava's cortex is not folded/pleated the way it is supposed to be. These malformations of the cortex are the probable cause of Ava's seizures.

These abnormally folded areas have not changed much. In addition, Ava's 24hr EEG last week showed quieting of many of the areas where the seizures appeared to come from. That's a bit of good news, and for it we're thankful.

Thanks for your prayers today. We are still absorbing the news and have a lot to process in the days ahead. It blesses us that you're with us on this journey. We are being sustained by your prayers and support.

The LORD is the One who goes ahead of you; He will be with you.

He will not fail you or forsake you.

Do not fear or be dismayed.

Deuteronomy 31:8

Slow Motion

Tomorrow, (Tuesday morning) is Ava's MRI. I'd be lying if I said my heart wasn't pounding in my chest.  Please pray for a smooth procedure and clear and helpful results.
It's a big day for our little Bean.

These past five weeks we've been living in slow motion. Life goes on, yet we cannot walk quickly. We feel tethered to home, and family and face-time with our daughters.
We simply don't know what tomorrow will bring.

We cherish each day to snuggle our girls close. 

We treasure the moments when sisters hearts are woven together.

We grab hold of the moments to laugh together, play together and breathe deep the feeling that we are somehow living normal life.

And we kiss, and cuddle, linger on the couch and take pictures. So not one of these moments is lost, in our hearts and memories. Whatever comes.

Multitasking Queen

How many times in the last 6 years have I wished I could have eat while sleeping in order to save time?? Ava's got it down to a science! As the picture shows, she's back home after a smooth 24-hour admission. Her EEG went well and the results are both encouraging and disappointing.

For the non-doctors in the group, an EEG measures brain activity, and a video EEG allows doctors to observe what a patient is doing while her brain is, or is not, having seizures. In the past, we could correlate Ava's rhythmic eye and hand twitches with definite seizures, and were also able to see many seizures that occurred without physical symptoms (called sub-clinical seizures).

This time, with the exception of an abnormally formed portion in the back her brain, they saw many fewer seizures over all. That's really good news. It's definitely possible that the ketogenic diet is working! Unfortunately that means the episodes she's having at home are not seizures...which means not treatable. They also have no explanation as to why she spends most of her time sleeping. So the burning questions we had are still not answered, and we'll have to sit tight until the MRI on the 14th.

The Week Ahead

Ava's got a big week ahead. This picture is from almost two weeks ago. That was the last time she was this alert. She's spent much of the last week sleeping, with brief awake periods. Since her medication levels aren't high enough to be causing this, we need to rule out the possibility that she's having lots of seizures that we aren't detecting, which are wearing her brain out and causing this sleepiness. Tomorrow morning, (Monday) we'll be admitted for 24 hour EEG monitoring (remember this test?) and if she is not having seizures, we'll likely be home by Tuesday evening. If she is, then we'll stay for a while longer while we begin new medications.

Elizabeth has fully recovered from her endoscopy, so she'll be back at school tomorrow.

To her delight, we've decided to discontinue her hearing aides for now. She has gotten more and more agitated while wearing them, and any gain in her hearing has been undermined by her constant attempts to remove them. It's just too much sensory input for her right now, so we'll have to try again in the future. We did receive surprising good news this week: our insurance covered the cost of her hearing aides entirely! Since they're not covered in our policy, we'd expected to pay the thousands of dollars to provide them for her...and now we don't have to! Praise God!!

Finally, a number of you have asked if we've gotten back the final biopsy report. We have, but the information in it is confusing, and simply doesn't provide any clear diagnosis or prognosis. In fact, the first line in the report says, "we're having a very difficult time with this case."...Not a typical biopsy report! At the end of the day, they don't know why, and they don't know what it will mean, but her brain is in really bad shape. It's possible we'll get some information from the EEG tomorrow, but the most important information --whether the abnormal cells in her brain are growing and how fast-- will hopefully come from her repeat MRI on Valentine's Day, a week from Tuesday.

With every breath we ask God for a miracle, and meanwhile, we live life. We continue to receive each day as a gift.  We treasure each of our wonderful daughters.  And we live each day by the grace of God and with the practical support from countless friends, new and old.

 

Thank you for staying with us on the journey.

Ava Update

Last week, after 5 hours at the ophthalmologist, we confirmed that Ava has cortical visual impairment. While her eyes are functioning, her brain is not properly processing what her eyes are seeing. We can't tell what, if anything, she actually "sees". This isn't a surprise to us since most of her development has stopped since her seizures began. So we rub noses, kiss her cheeks and sing songs in to her perfect ears. Her awake time is limited and our glimpses of her eyes are rare. So we massage her and move her joints, rotate her in bed and try to put her in as many "normal" positions as possible - that way, if any development is occurring, it won't be lost. Today's lab tests didn't provide any answers as to why she's so sleepy, so if she doesn't wake up more over the weekend we'll get admitted next week for an overnight EEG to see if she's having seizures we aren't detecting.

Beautiful Blue Eyes

We're not sure what it means, but we'll take it! We love our little girl having awake time!

Possibly...

Home today! Still waiting on discharge paperwork, but we've got all her new prescriptions, we've received training on her Broviac (the port in her chest), her MicKey button (gtube) and making her formula at home. So since she hasn't has a seizure in 48 hours, we are hopeful that we can get a few days at home seizure free. As wonderful as discharge is, it would be really difficult to head home only to come back and get admiitted in a day or two. Right now we are in a bit of a routine, and as difficult as it is to stay, the upheval every time we come home and then leave again is real. The big girls feel it and Matt and I feel it. So we continue to pray for a total end to her seizures and the hospitalizations that accompany them.

We are so thankful she's stable, she's a little more alert and stable on the ketogenic diet, though it could still be weeks or months before we know if it's having any impact on her seizures. We don't know how long this calm will last, but we're thankful for what we have today. Thank you for all the support, all the emails, comments, texts, generous contributions to our nanny fund and meals. We simply could not have survived this admission without your ongoing and tireless practical help and prayer support. We're beyond grateful.

Our Keto-Kid

On Saturday morning, Matt and I finally felt confident enough to choose the next steps in treatment for Ava. We won't know more about the abnormal masses in her brain until we get another look on MRI in a few months. So until then, what we can work to address is her epilepsy.

Here are a few facts, without getting too technical:

Most people with epilepsy (around 60%) will get control of their seizures with the introduction of one seizure medication.

Another 30% or so will improve with the addition of a 2nd medication.

The remaining 10% have what is considered "hard to control epilepsy." And no matter how many medications you throw at them, they're not likely to get seizure control. That's the group Ava's in. So the last glimmer of hope for these folks is a treatment that has re-surfaced in the the past few decades: the Ketogenic Diet.  It mirrors the Atkins diet (high fat, very low carb) and forces the body to metabolize fat instead of carbohydrates for energy.  This state is called "ketosis" and for centuries has proven beneficial for seizures.

On Saturday at 10am, Ava started receiving ketogenic formula under the supervision of her doctors.  Her diet is carefully monitored by a dietician and measured out on a gram scale by her totally conscientious mother. (YAY! finally a use for my gram scale besides measuring ground beef to the perfect pound!) We'll also need to restrict her from lotions, baby medications and diaper creams....which also contain carbs...did you know that??

So here's what we're waiting for:

*Her body will enter ketosis (as indicated by a urine test at every diaper...we're getting close)
*Her blood sugar will drop and then bounce back (not quite yet, though it's dipping)
*Her blood will get acidic and then level out (not quite yet)
*Over the next month, we hope to see a positive change in Ava's seizure activity...though this can take up to a year.
*1/3 of folks will see no change, at which point, if that's Ava, we would stop the diet.

But from where we stand, in the very best case scenario, once her body enters ketosis and her blood dynamics level out, we can go home...yep! HOME! But first she has to stop having hour-long seizures like she did yesterday and today. Both required serious rescue meds, so we can't leave the hospital until those cool off. We see a glimmer of hope about the end of the week, but it's just that...a glimmer.

First, we've got to get Ava into ketosis...go Ava go! and the prolonged seizures (heck - ALL the seizures) have to stop!

THANK YOU for your prayers. Despite Ava's continued seizures, Matt and I feel at peace with the direction her treatment is heading.

Funny Business

Ava did not have a great night last night. Yesterday she dropped her heart rate for a few minutes, overnight it was her oxygen saturation and this morning she had a two hour seizure which meant she didn't get her scheduled EEG to check her brain for subclinical (not visible to the observer) seizure activity. She did get rerouted to to a CT scan however, and the preliminary results look fine.

It's difficult to see her regress after a few wonderful days. We know many of you around the world are gathering in your various homes to pray for Ava and our family tonight, so we wanted you to know the latest...the fight continues!

In other news, our sweet Miss M is back and feeling better, and after having two days of fevers, Elizabeth appears to have rebounded without a hospital visit! Quick, somebody write that down! Ruby and Hannah Mae are still fighting colds (tis the season!) which means they can't come visit Ava and so we continue the hospital home juggling act.

All of this is in His hands. We so appreciate your prayers!

Recovering Beautifully

She's waking up. She's making some eye contact. She's cooing. She's showing us her dimples and seems like she wants to smile. She's resting in our arms without constant involuntary movements. She's drinking from a bottle. She's trying to follow a toy with her eyes.

Ava is waking up.

It could be the changes we've made in her medications.

Or it could be that God is healing her brain.

Nothing, you see, is impossible with God.

MRI...check! Biopsy...check!

Now we're just waiting to see her in the post-operative suite!

Thank you for your prayers and all the emails, texts and comments here on the blog. I can't tell you how buoyed we are by your expressions of hope, love, faith and encouragement. We have even made contact with two other NICU family friends who are also in the hospital right now. With all the love near and far, we know we're not alone and that is such a blessing.

Ava's biopsy went well. The surgeon got all the samples he needed and she had very little bleeding and so far no other complications. They sent off the samples and we may get some preliminary information this evening. We're on pins and needles, but can't make anything go faster. She'll stay in the PICU tonight for observation, then it's back up to the Neurology floor for her to recover for a few days while we make the plan with the team. We'll likely be here through the end of the week. Beyond that, we've learned not to make plans.

Every breath is grace.

Yet another BIG day for Ava

Tomorrow morning at 7:30am, Ava will be wheeled back for a "stealth" MRI, followed by a brain biopsy. She'll need to be sedated for both procedures, but they'll occur 6 floors apart so she'll be "bagged" while they wheel her between floors. Both procedures are considered minor, but the whole morning is a big deal for us. Please pray for Ava's safety during sedation, transport and the procedures. And if you have the faith to believe God can do a miracle, would you pray that her MRI would be perfect and the biopsy would be unnecessary??

During the MRI they'll be getting coordinates so they can aim perfectly for the biopsy. The biopsy will require a craniotomy, and the neurosurgeon will be removing three different pieces of abnormal brain tissue for testing. We may get preliminary information, but it's unlikely we'll get definitive answers sooner than a few weeks. Please pray for Dr. Smyth's hands and protection of Ava's surrounding brain tissue. Please pray for clear information from the biopsy and wisdom for Matt and I as we work with the doctors to decide what to do with the information once we have it.

Meanwhile, Miss M has a stomach bug, so she's gone to recover and we're reworking things for tomorrow so Matt can be here too. Please pray for wellness for our sweet helper!

One moment at a time, God provides.

We wait. We rest. We depend. We trust.

And we take big, deep breaths.