Tuesday Thoughts.

 Today I am missing my girl more than most days. Maybe it's b/c the realization has hit that I have a 2 year old, and I have no idea how quickly we got here. While I am here at work she is growing up. I'm missing it.

 Maybe it's the devastating footage of the the tornadoes in Oklahoma. Heart wrenching. Not being able to reach out & grab your child or spouse to ensure that they're safe. The chaos. Watching your home & everything you've worked so hard for being ripped away from you. Helplessness. We know God is present, but we wouldn't be human if we didn't ask "why?". We are praying for you Oklahoma. God will bring beauty from your pain. 

Tonight I will pick up carry out for supper. I will skip the gym. I will spend my extra time soaking up my beautiful family. I will thank God for every second I have them...because so quickly it can change.

Austen: Year 2

It's almost midnight & I am just crawling into bed. I've been doing food prep for Aussie's big birthday weekend. My girl will be TWO tomorrow. It's so hard to believe. I feel like I was just writing her first birthday update & now it's time to fill you in on year 2. Austen's story was a little difficult to find on Facebook so I published it to my blog. I know some are curious, but feel awkward asking questions about Austen. Please know that I don't mind the questions at all. It gives us a chance to give you a tiny glimpse of how amazing our God is. That's another reason for these updates. I feel like God sent us on this challenging journey for a reason. I don't know why, but I do know that he uses us for his glory. I don't share Austen's story for pity, self-glorification, or to beat a dead horse ;). I share it because if I can reach one person I feel like it's worth it.

This past year has been much more normal for us. We've encountered a few scares, but there have been no hospital stays. Thank. God.
Aus is still having her episode/seizure activity, but we have learned a few things. Over-stimulation obviously makes them more frequent so we monitor TV, busy atmospheres, flashing lights, & so on. Fever & pain make them worsen as well. These things are all very normal for seizure patients... Except no one can actually diagnose Austen as having seizures. Our doctor calls them "electrical discharges" & they aren't really sure what she's dealing with. Characteristically they're seizures...& that's the best way I can explain it. We've learned when we see an increase in activity that Austen has something going on. So far this year it's been stomach virus, teeth pain, & ear infections. It's her body's way of telling us things are off. As soon as we get her pain or infection under control things return to normal. We are so blessed that we typically only see a few seizures a day. In the neurology clinic we see so much stuff & it literally wants to make me drop to my knees then & there to thank God for our "problems"! About a month ago we went a whole week without a seizure!! We don't really know why..but I do know (even though it didn't last) I will praise God for that amazing, stress free week!

We've also learned some details about how Austen's condition (ACC) effects her specifically. It's different with every patient. Most not being nearly as blessed as she has been. In HER case she is cognitively on target. Just spend some time with the little whipper snapper. She's got it together ;) Her motor skills are where we see a delay. She is progressing beautifully... Just a little slower than most. Imagine trying to walk when the two sides of your brain aren't connected & they aren't working together to tell your body what to do. That's what Austen is overcoming. Thanks to therapy, practice with family, & many trying sessions with Mae Mae ;).. Austen is spoon feeding herself, transitioning from laying down to sitting up, attempting to pull up into standing, & taking steps. I know this may surprise some people because if you've seen Austen you never would've realized she couldn't do these things. She's so normal, and you really have to pay attention to see it. Austen doesn't talk much either. She has a few words that she'll say, and has pre-speech characteristics so we don't worry too much. Her motor skill delay contributes to that as well. Communicating has been a huge frustration! Remember that her logic is there. The sassy little 2-year old knows what she wants! She just can't tell you. That's when we turned to "signing". LIFE-SAVER! We still get mad at each other..sometimes I wanna pull my hair out..., but for the most part we've learned how to use signs to communicate. Our big goal this year is to WALK. Say a prayer for Aus! The 27 pound youngin is killing my back!
I often reference Austen as our miracle.   If you don't know the beginning of Austen's story then you don't know this...We weren't given any hope for a normal life with her. She wasn't "supposed" to be able to do anything according to her MRI & neurologists. Her doctor still can't believe how she "continues to amaze". I love hearing that.

When I was pregnant we were building our house. One afternoon as we were burning a big trash pile the wind picked up a bit. It began blowing the flames up into our huge Magnolia tree. The Magnolia has been on the homestead property for years, and I was devastated at the though of losing it. I heard the crackling of the leaves & I just knew it wouldn't survive. That spring there weren't any blooms. The tree was still green but no flowers appeared. It was green though, and I was holding onto that. Austen was born that May, and the Magnolia tree was the least of my worries. The following spring I was at the homestead property preparing for Austen's first birthday party. Our house wasn't complete, but we were close. I was rushing around trying to set-up party tables when I spotted the bloom. I almost cried I was so happy. The Magnolia was back & the first new bloom was on Austen's first birthday. I have had a strong bond with that silly tree ever since. I know it sounds crazy, but I can identify. When we were told the news about Austen I felt like I had been "burned". As a new mom you have visions of how you think things are supposed to be. When it wasn't my idea of perfect I was crushed. Then I held my baby. She was perfect...God gave me a "Magnolia" after I had been "burned".
This is the second year of blooms since the fire...how fitting that we are celebrating Austen's second birthday.
I don't care how silly it may be. That tree & my little "Magnolia" will have my heart for eternity.

Soli Deo Gloria

Austen: Year 1

This is the update from Austen's 1st birthday (May 2012)


I can barely say this out loud without crying, but....We made it a year!

So many people have emailed & messaged me over the past year out of concern for Austen.

Some of you are family, many are friends, & there have even been those occasional messages where we may barely know each other ...and still you cared.

You all know who you are :)

Austen will be ONE next week! We have had so much going on with our house & our baby girl that the year flew by. SO many people constantly ask how Austen is doing. I haven't really sat down & sent updates so i'm doing that now. For those of you that are interested in the "first chapter" of Austen's story you can find it under the "notes" section of my Facebook. It's titled "Austen Avery Davis".

For the first 6 months of Austen's life everything was perfect...or as perfect as it could be with a newborn ;) Of course there were many sleepless nights and so on, but we were thankful for the normalcy. At almost 6 months exactly...Austen began having some mild seizure activity. We were admitted into the hospital in early December 2011 & she was diagnosed with infantile spasms. She underwent treatment for that in the form of a steroid injection...which I hated!! As did those who actually administered the injection lol. The seizures/spasms seemed to improve, but didn't stop completely. After a few frustrations with everything we decided to see a new neurologist at Nemours. Austen has had several EEG's (tests her brain activity), and over time they have improved. She still has mild activity, but she is doing amazing! She will still have EEG's from time to time, and no one knows what the future holds. I honestly feel that she is gonna make it through everything fine & I have a peace about it. The "episodes" as we call them...haven't seemed to effect her at all. She still seems to be progressing and learning new things....and is the sweetest, snuggliest, happiest little thing ever!

Over the past year I have learned not to tell God what you can or can't handle. He will decide that. From the day we found out about Austen's brain abnormalities I said out loud to people "I'll be good as long as she doesn't have seizures! I don't know anything about seizures, and I don't think I could deal with that." WRONG. I CAN deal with that. We ARE dealing with that, and I think we're doing awesome.

I have learned to FULLY trust God....and there's a big difference in trusting God and FULLY trusting God! I'm sure everyone has been in a completely helpless situation. I was earnestly praying constantly for things I felt I wasn't getting. Brad & I sit at night and hold Austen through a seizure and it's hard. We can do nothing to help her. We are taking our child to doctors, and just trusting what they say...& they all say something different! Everyone has their own opinion as to what we should do, but none of them were in our shoes. It's stressful & we were being pulled a million different ways, and the last thing we wanted was to be pulled apart. We are in this together & fighting for the same thing. One person might think one thing & someone else may disagree, but all you have to do is step back and consider that even though everyone isn't in agreement....we all want the same outcome! All of us just want is what's best for Aus. At one point over the past year I was completely broken & helpless. I wasn't ever making light over anyone else's problems. I'm aware things could always be worse & I ache for those with bigger troubles...but this was our "worse"!! If something didn't change I was going to just give up on everything..The very first day of 2012 I was sitting in church holding Austen listening to Phillip preach. I will NEVER forget that sermon on trusting GOD. I've heard people say before that they felt God tug on their heart & I thought it was an expression. I mean i've been in church forever, and had never experienced that.That day he didn't "tug" he snatched....I was literally breathless and I knew immediately that I hadn't given it all to him as I said I would so many times.God hears my prayers & it's his decision to answer them how he sees fit. I finally gave it all to him.

When I look back on the day we sat down with the Doctors and recieved the news about Austen....and also the several months that followed...there is one thing that stands out to me. I was so concerned with what it meant for ME. What am I going to do? Why did God do this to US? How am I going to care for a baby with potential problems? How is MY life going to change?.....How sickening & selfish!!! I'm embarrassed to have behaved that way! The only excuse I can muster up is....hormones?! That doesn't even seem good enough. God has changed my whole perspective over this trying year! I'm so excited for everyone to see that He still works miracles. I HAVE ONE. Every single day my feet hit the floor & I wrap my arms around this little girl who isn't "supposed" to be doing the things she's doing. I can't wrap my mind around this fact.... Austen is missing the part of her brain that connects the left & right sides together. The two sides of her brain aren't "supposed" to be able to communicate. Can you fathom that? Have you seen Austen?! My baby uses the right and left sides of her body to work with each other, and she isn't "supposed" to. There are sometimes that I let myself get down b/c she may not be doing exactly the same things that other kids her age are doing. I immediately recover with this....She is doing FAR beyond what any doctor ever gave us hope for. Our geneticist looked at Aus several months ago and said she is "DEFYING HER ODDS"! In my prayers I have given Austen to God over & over again...i've prayed that He would do amazing things through her...and the truth is....He already has.

Thank you to those who continue to pray faithfully for us.

Thank you to our families. Through the struggles you have all been there for us & we know you all only want what's best for Aus.

To my besties (the Jennifers, Hannah, Jess, Keri, Haley, & Tamra)...You girls may not know it but you keep me going. You constantly check on Aus & me. You've been through all of this right with me! You've listened to my struggles & put up with my vent sessions. I love you girls like my sisters. xoxo.

To the girls at work...We hear 8 hours worth of each others dramatic lives every day...and we give advice as needed. Thank you all for listening & giving :) P.S. I need to apologize for my sparatic crying episodes at work...I have my days, but i've gotten A LOT better!!

To those who I only know as aquaintances, but you have showed concern & given us encouraging words.....Thank you. It's amazing to know that in today's society people still genuinely care for others!

Austen's Beginning

So after a 2 year sabbatical from this blog...I'm back. SOOOO much has happened since I wrote last. Obviously our baby girl was born, we got our new house built, & our life is beautiful.

My girl turns 2 tomorrow, and I wanted to post the letter I wrote shortly after she was born. This is part of the reason for the long blog break....besides just being a busy Mama. I want to be able to write. It's therapy for me, but it's also hard at times. So for those that want to know where Austen's story begins...this is it.

*******************
Austen's Birth (2011)

First of all Brad and I would like to thank all of you from the bottom
of our hearts.

You have prayed, you have visited, you have facebooked, you have
called & texted, we have been in your thoughts....and when we needed
it, you gave us our privacy.
We have haven't confided in many besides our immediate family. The
reason for this is not because we are trying to be secretive or hide
anything. It is simply because we didn't, and still don't know all the
details or aspects of the news we were given.

 Last Sunday I was officially 41 weeks pregnant and had been begging to
be induced. Not because I was miserable, but simply because we were
ready to meet our sweet sweet Austen. Dr. Werner (who has been amazing
through all of this) agreed and my induction was scheduled for that
Sunday night. I called and called and called and there were no
rooms...everything was full. Dr. Werner advised me to just go into the
office on the following day (Monday) at 2...she said we would do an
ultrasound on Austen to make sure she was still good (as she had been
throughout my whole pregnancy) and then try to induce later that week.
So the ultrasound was done & we met with Dr, Werner. She expressed a
concern from the ultrsound. Austen had what appeared to be an enlarged
ventricle on the top of her head. Dr. Werner said that she wanted to
go ahead and induce me so we could get Austen out and run some tests
on her. After consulting with Shands it was decided that in order to
save Austen some stress I would have a c-section at shands so that we
would not have to be separated from her once she was born and sent for
further testing. I was immediately transferred. After several hours, I
was discharged....because again there were no beds! We stayed with
friends in Gainesville and I went back the next morning for a
scheduled c-section. Finally around 6:30pm I was taken in for my
surgery. Austen was born a healthy 8lbs 11oz. She is beautiful!! After
several pictures, Brad & Austen were taken down to the nursery. From
there Austen was taken in for an MRI of her brain. I was taken to
recovery and around 11pm I was finally able to put my hands on my
little girl & we were taken to our room. 2 hours after that radiology
staff showed up and said that Austen would need to be transferred to
NICU to be monitored. The MRI had come back abnormal. The resident
doctor didn't know details he basically knew that Austen had to be
monitored. I asked if we could have a minute alone with her. Shortly
after, Brad took Austen down to NICU, and we didn't sleep....We prayed
and we cried.

The next few days were basically a whirlwind of doctors....we met with
neurology staff, radiology staff, & geneticists, along with all the
usual staff you encounter during a hospital stay.....Brad & I have
decided to share what we know through this mass letter. Some of you we
are very close to, some of you we know casually, & some of you may get
this and we barely know you. That doesn't matter to us. What matters
is that everyone gets the whole story and everyone gets the same
information.

Here is what we know....
Austen's primary problem is that her brain was formed without a corpus
callosum. I don't really expect that many of you know exactly what
that is...We aren't even sure exactly what that is. We do know that in
some cases people are missing that part of their brain, and they may
not even know it. They may function normally, get in a car accident at
30 years old, go in to have a brain scan and discover they don't have
a corpus callosum. In other cases it can affect the brain in many
different ways. None of which can be foreseen.

Austen also has a cyst in her brain that is filled with fluid. The
cyst hasn't changed in size & isn't affecting anything as of now. It
will probably be one of those things that will be monitored.
Austen's third and final abnormality is that she has a extra layer of
grey brain matter. This is another one of those things...no one knows
how it may effect Austen...if at all.

Now you should understand why we havn't shared much. We have no idea
how these abnormalities might effect our baby. The doctors say that
Austen still had so much good brain that no one really knows. We are
basically living day to day...and honestly aren't we all living day to
day anyways??

 As of now Austen is amazing. She was in NICU but no one could figure
out why....she is functioning exactly how any baby should be...Her
hearing is normal, her eyesight is normal...her vitals are perfect.
She is beautiful!!

In fact....if I hadn't gone over my due date, or if I had been induced
Sunday night I wouldn't have had that last ultrasound that showed up
abnormal & we wouldn't even know Austen had any problems. We would've
brought home what we knew to be a completely normal baby. So even
though there's a part of me that wants to be angry with God....clearly
he was watching out for us....and we also know that we can't get
through this without HIM.

Brad & I are also doing well. We are in this together, and we keeping
each other strong. I won't lie...I usually make fun of those people
who get all mushy about their husbands on facebook...but
seriously....Brad has been beyond amazing through all of this, and I
couldn't do it without him. We know that this baby couldn't have been
given to a better family....and when I say family...I mean that Austen
has an incredible  support system. Grandparents, aunts, uncles
included. She is dearly loved.

A nurse approached me in NICU and told me how "sorry" she was. I know
that people don't know what to say in these situations..and everyone
means well, but we are not sorry. We love our little angel baby with
all of our hearts. She is the best thing that has ever happened to us.

We appreciate your concern for us & we covet your prayers! Austen is
already a little miracle.

Feel free to share this with anyone who may be interested in the
beginning of our baby girls amazing story!

With all of our love,
Brad, Beth, & Austen