Craniosynostosis

A big word for a small baby.  Our son was diagnosed with a condition called saggital craniosynostosis at 3.5 months old.   It was actually overlooked by our pediatrician. Even after we brought it to her attention, she seemed unconcerned.  Needless to say, we have moved to another doctor for our tater baby.  So, if not from our doctor, how did we discover Archer had a birth defect?

I had been going to the chiropractor for prenatal visits starting around the middle of my second trimester, for hip pain.  She had told me that after my baby was born, she would do his first visit for free.  We discussed the pros of chiropractic care for aligning baby after descending through the birth canal, help with breastfeeding, digestion issues, and sleep.  Chance & I had met our deductible, so we decided to go ahead and pursue chiropractic care for our newborn.  I can't say it's helped with sleep (sadly), but she was able to align a jaw issue he had, which was effecting his breastfeeding on one side.   I had been in a lot of pain and thought something must be wrong with MY body, resulting in a bad latch or positioning.   Turns out, he had a tight jaw on the left side, so he was unable to open as wide when latching.   I could tell a difference that night after his first visit.  I was sold!

So, we have continued to see the chiropractor, Dr. Bell, each week, or every other week, since Archer's birth, four months ago. We had noticed Archer had a funky dome, but babies have weird heads, and we didn't spend a lot of time evaluating their shapes for the "norm".  Archer also would not really allow us to touch his head much, even since birth.  He always seemed very sensitive and would cry when we rubbed his head or attempted to put on a hat.  Because of this, we never really feared "touching the soft spot" or feeling around on his noggin'.  We just assumed he didn't like his head touched.  Combine that with all his other temperamental oddities and it didn't strike us as unusual in the least.  On September 30th, when we went in for our chiropractic appointment, Dr. Bell felt along his head and said "hm. when is the last time you saw the pediatrician?"  I happened to have gone in the week before for his never ending baby acne.  She continued to feel his head and had me feel a ridge along the top.  She noted that we should go see the pediatrician because it could be a suture that has fused.

Huh?

I had never heard of sutures.   It hadn't crossed my mind that my baby's skull would close up too soon.  That's a thing!?  So, I of course asked, "What if it is?"  Dr. Bell didn't act overly concerned, but said that it would require a surgery, that would of course not be fun, but was routine enough that babies handle it really well and are completely fine postoperatively.  We left that day a little on edge, and of course, as usual, Archer cried the whole way back home in his car seat.   My mom talked to me on the phone and was very adamant about me not googling it before seeing our pediatrician.  I actually didn't until a few days later.   Then I saw the photos of other babies with saggital cranio and I was 99% sure that Archer had this same birth defect.

Why had I never heard of it?!  Why had so many doctors overlooked it? Why had so many pediatricians blown off other parents' concerns about their babies head shape?   Why did I know more about this condition from Dr.Google than my physician, who I paid to look out for this type of thing?

Craniosynostosis effects 1/2000 babies, starting within the womb.  While it can be caused by a syndrome, it is most often isolated, which is the case for us.  It is not in our genetic history, at all, on either side of the family.  Our doctors assured us that there was nothing we could have done to cause or prevent it. It's a condition that researchers have not been able to determine a definitive cause.  It just happens.  Had my chiropractor not spoken up, we may have waited too long for the less invasive, endoscopic surgery.  While still a major surgery on the skull, it did not require an ear to ear cut, like the more invasive, cranial vault reconstruction.   The CVR surgery is highly effective and requires no helmet therapy, but it's not handled as well by babies and almost certainly requires a blood transfusion.  Our doctors at Duke were thrilled that we made it *just in time* for the endoscopic procedure.  Archer was diagnosed by the chiropractor on 9/30.  Confirmed by xray on 10/7.  Confirmed by the nuerosurgeon on 10/22.  Underwent endoscopic craniectomy on 11/4.  Needless to say, it all happened VERY fast.

In the next few days, I will post up our story of the surgery. In the coming months, I intend to follow up on our helmet therapy journey, as well.  I hope that any mommy who is scouring the internet after a diagnosis, or a gut feeling that something is amiss will find this blog and feel less alone.  While this is a shocking condition to find out your baby has. It is treatable, and your child will recover faster than you would even recover from a procedure at the dentist.

For more information on our surgery, visit:
http://www.thetp.org/article/view/4165/5039

What they don't tell you about newborns...

My long lost blog. We meet once again on a rainy day in..October?? Wowza! Time has dropped like sap out of a tree and at the same time flown on by.

I sit her gently rocking too and fro as my sweet angel child slumber a in my arms. Who's that you ask? Why yes we did have s baby! And why no, he's not as angelic as I claim :)  Our son, archer, entered the world on july 14th, two weeks ahead of schedule. The ultimate curious critter, he could not wait to see all this place had to offer. Turns out it was more than he bargained for and quite frankly a bit overwhelming. We should have known that 2nd night of his life, as he wailed in anguish over a gassy belly, that we were in for it! Not all babies are unicorns and rainbows. In fact, some have all the little struggles, not just one or two.  Time to get real yall! Archer spent the first 7 weeks of life screaming in distress. We, as parents, of course were also totally overwhelmed (particularly mommy). Worry enveloped our minds as we struggled to remedy our sobbing infants problems.

It's a bad latch.
It's gas.
It's silent reflux.
It's an oversupply of milk.
It's a forceful letdown of milk.
It's colic.
He's high needs.

We ran the gammut of "it must bes" and even had him on baby Zantac for a week. Let's just take a smidge of time here to say...what the humph are people thinking making infant medicines taste like "strong peppermint". Disgusting. Even an adult wouldn't like that. Then, then! Well mask it with grape to try and overpower that sweet minty goodness. Blech! I pity any child (and family) who has to consistently use infant Zantac for reflux. With that said, our baby did not have silent reflux. He slept in his back at night and slept pretty well all things considered.

Our little buddy had the hardest time getting to sleep during the day. Those first 6 weeks were BRUtal! I bounced on an exercise ball as he screamed in my ear. I prayed for help, I prayed for relief for both myself and arch man, I prayed for sanity, anything. Everything. I pleaded with God with the fervor of Moses pleading for the Israelites. I could not understand why we were having such a hard time. Now by this point my poor tater baby was exhausted from all crying, no sleep. I started going into the dark bathroom to bounce him with white noise blaring through the darkness. This worked!

That leads us to the 2nd stage of brutality. We eventually put up black out curtains and I spent the following 7 weeks in the dark nursery bouncing. White noise screaming. And occasionally Netflix once archer was way out asleep. He would wake the nanosecond I attempted to lay him down or even move off the ball, to rest my back in the glider. My parents visited during this stage and my mother reminded me how victims of torture are treated: solitary confinement, no sunlight, loud noises, physical pain, sleep deprivation. So, fantastic! I was being tortured. (Ok a bit extreme.. but is it?)

As the days passed by, my dear babe grew into a man, and I bounced him off to college. Okay of course not, but he did become a very heavy baby. At a 12 week doctors appointment he weighed 14 lbs and that's when I knew... I could not sustain holding my baby for every nap, hours of the day, on an exercise ball. My back was in agonizing pain, so I transitioned to the glider. Enter stage 3 of brutality. Screaming! Oh, the screaming. Tater baby did not want to be rocked. "Bouncing only mom", he said in ear piercing squeals.  But eventually he gave in (somewhat). This is our current state, where he fights sleep unlike any thing I've ever seen. Worse than those sad toddlers who are so exhausted but trying to accomplish a task (eating, playing, coloring). He cries himself to sleep eventually. All while I jiggle, rock, pat, and shush him into drowsiness.

Now you've read a snippet of our life for the last 3.5 months. There is oh so much more, but I'll let that soak in for the optimal full experience to come. Perhaps I'll even delve into my birth center birth experience for you. (Don't fret, it was actually an amazing natural birth) My physicians determined archer was simply a "high needs" baby. And Dr. Sears knows his stuff, because he describes my baby to a T! Demanding babies that end up empathetic and full of independent leadership qualities.  So there is hope for him in the long future. We have it rough but we do finally have lots of smiles, easy breastfeeding, a mostly healthy tank of a boy who is attentive to his surroundings with killer neck control (I believe from arching back crying so much cause tummy time never happens round these parts).  I love him to death and could kiss his face off, even when it's grumpy as an old man or red as a tomato.

Transitions

Transitions?  Why you so hard?

The last few months have stretched and grown me in ways I cannot even begin to explain.   I know, cliche, but really!  Moving to a new state was a pretty big deal at first, but now it's pretty normal.  I miss home (Texas forever!), but now that we are in our new house and settled into a somewhat usual routine, things are just...normal.  Different than before, but what is now normal to me.

This is a blessing no doubt, but also brings me too often to a place of discontentment.  Ah, my sinful heart, always set on myself.   The "what now?" "What next?"  starts to kick in.  I have realized, in the last few weeks especially, that I truly define myself by what I'm doing, and then feel totally defeated when I choose to slack off and not accomplish my daily goals or tasks.  I spend lots of time distracted by technology (like most Americans!)  and content with a busy to do list, which oftentimes doesn't get fulfilled...because I'm worrying about all I have to do or 'medicating' with distractions.  God has been gracious in revealing to me this area of weakness, and now I am to choose what to do with that!  I can be angry and annoyed and say, "whatever" or I can accept and agree and change my life, focusing on Him and my family as my two most important areas of service.  As my husband and I are expecting our first baby in July, now is the time for me to let God rearrange my schedule.  I need that and I want that.

This year, I embarked on an incredible journey through Bible Study Fellowship.  Wow!  I just have to say that kudos to BSF leaders of the world!  You guys are total world changers and while it doesn't always feel like you're doing anything at all, you are obedient to the Lord and He will bless you tremendously for your service to Himself.  Last spring, in Austin, I had been asked into leadership after finishing up my first year in BSF.  I was so excited to do life with those sweet women in the leader's circle.  Lots of young moms and seasoned BSFers.  It felt like home.  Upon our relocation, I was still encouraged to be a part of the study, even as the role of group member instead of group leader.  God honored His call for me to pursue leadership, and trust in His timing, by allowing me to be asked into the leadership here in NC.,too.   I eagerly accepted, and am so grateful I did.  I have been able to minister and shepherd a great group of women this year.  While the faces of our group have changed throughout the year, so far, there are those who have stuck with it week after week.  Each woman holds a special place in my heart, as I have prayed for a special love for each of them.  The Lord has certainly granted me that.  I have wrestled with God in trying to control my group discussion time and to do things "right", but I have learned that that is not His goal for me.  He wants my heart and my trust, total dependance on Him to provide me with exactly what I need, when I need it.  BSF leadership can be hard when you are striving for excellence and frequently fall short, but where sin exists, grace abounds all the more!  What a joy it has been to see my own personal growth during the first half of this study.  I am more diligent in prayer, more attentive to how I can train and shepherd other women in my life, and more bold in my faith. I also have seen what true leadership looks like from the inside.  These women in my leaders group are phenomenal.  I am so inspired by their diligence in prayer, in reaching out and making contacts, and their genuine attitudes that point towards Christ.

So, for today, I just wanted to share how much I am looking forward to the remainder of our study in the life of Moses and encourage anyone seeking community and a life changing study of scripture, to reach out and find your local Bible Study Fellowship.  I was most certainly not disappointed!

Furthermore, I would love you to pray alongside me as a I ask for discernment on what it means to put God first in my current circumstances.  Prayers also for a hear that is willing and eager to accept the changes.

Until next time,

Moving to the South

              

Well, it has been a month, but I was trying to wait until we were in our new home before I started talking about our great move from the Lone Star State to the....Tar Heel state?  It has been a very quick adventure for Chance and me, as we packed up within a matter of weeks and hit the road to NC.  After lots of prayer and wisdom seeking, we decided to move to the east coast for a job opportunity Chance received with Epic Games.  I was so hesitant at first (of course), but quickly remembered how gracious the Lord was in our move to Austin this time last year.  I was overwhelmed with a feeling of peace about the situation.  I am sad to leave sweet friends and family in TX, but I know things will fall into place here, as they did in Austin.

                       

 

 As you can see, it's no coincidence that we come from TX to NC with a flag like that!

I have already begun a relationship with a few women here, who I can see are amazing examples of Christ in their community and amongst friends.  One of the hardest parts of relocating is experiencing that "college freshman" phase of making new friends.  "Hey there! Do you want to be my friend? Can I sit by you?"  It's a little intimidating when you are younger (and sometimes when you're older, too), but as I am now in my late 20s, I realize that it's actually pretty easy and you never get rejected.  People are more often than not very welcoming and excited to make a new friend.  So while I'm stepping out of my comfort zone and being social, I have been feeling a different pull from the Lord.

A little background:  My husband and I are in temporary corporate housing for a full month before we move into our new house in NC.  It's a little one bedroom apartment, furnished with someone else's things, and we have a couple of bags each with select outfits, toiletries, and my pillows.  We have two small dogs and a cat here as well. It's a lot goin' on in this little apartment.  Mind you, we have already had to call the cops on a suspected domestic dispute.  There are college kids partying outside till all hours of the morning, and there is a street light right by the bedroom window, shining bright through the night!  Okay, complaints done.  I've had a load of free time piddling around at the apartment these last 4 weeks.  I've researched everything udner the sun on Google:  Essential oils, corruption of the FDA, Sex trafficking, child labor, ethical clothing, mission trips, gardening, etc. etc.

So, back to this other unexplainable desire.  I had a friend invite me to a Noonday trunk show while in Austin.  I wanted to go, but felt bad because I didn't really have money to spend and didn't really know much about the organization.  In my time this month, I have done extensive research on the company and am overwhelmed with the good they are doing to help others!  Those of you who know me know a couple of things.  1.  I love unusual jewelry and clothing.  I have people comment on things I wear all the time with, "I could never pull that off!" or "I'd look like a table cloth in that."  Not sure if they are compliments or not, but I'll take 'em! 2.  I am not a sales person.  I worked in retail that was not commission based, and I was killer at organizing clothes!  Selling them....not the best.  I hate being pressured, thus I hate pressuring others.

I do, however, have passion, and when I feel passionate about something (education, art, children) I can talk your ear off about it.  Because it matters to me!  Noonday's motives and desires are the same as mine, and so I am moving forward in becoming a Noonday representative (called an ambassador).  It's a direct sales company, which is so out of my comfort zone it's unreal, but the cause it what motivates me.  I am an artist and helping other artists is a passion of mine!  Helping other artists to support their families, keep their children from becoming orphans, educate themselves and their children, provide even more opportunities for their community, rescue women and children from sex trafficking, while providing sustainable jobs is super important to me!  I never thought I could help, other than just donating cash, but now I see that I can help empower, rather than enable.  I will write another post about Noonday specifically, including my launch and website.  I'm praying others will see the opportunity to purchase with a purpose and partner with me in supporting these artisans.

While I am stressed with the last parts of our move and starting a new business, I am so excited and grateful for the passion the Lord has put on me these last few weeks.  What a special time I will always remember when my eyes were opened to new possibilities.

With Love,

Ash

What is Noonday?

My Heart

"Jesus said to him, "If you wish to be complete, go and sell your possessions and give to the poor, and you will have treasure in heaven; and come, follow Me." 22But when the young man heard this statement, he went away grieving; for he was one who owned much property. 23And Jesus said to His disciples, "Truly I say to you, it is hard for a rich man to enter the kingdom of heaven."  -Matthew 19:21-23

The last few days I have been struggling with my perception of riches (money, stuff, etc.) I am realizing in my own life that the problem isn't with the riches or the money themselves, but my selfish heart.  I desire things to be a certain way: organized, colorful, matching, finished.  When I can't have them (or acquire the things to have them) exactly how I envision, I let frustration and discontentment fill my heart and head.  I remember living in Dallas and feeling so accomplished and such joy from finally getting the main living spaces of our home "updated" or fitting to my aesthetic.  Finishing a space made it feel like "home".  When we moved to our new home in Austin, I immediately spotted all the things I wanted to change.  Our realtor even encouraged it by describing our home as "blank slate" to "make your own".  I felt that excitement to get to work on it, but as the months have passed and I have used up my budget and done most of the things I can do "DIY" style, I have turned my thoughts to the things I could buy to please my insatiable desire for character and style.  It is a never ending cycle of insanity!   My selfish heart will never be happy with what I have, because it's just stuff!  I feel like I have convinced myself that it's not the same since I'm making a nest for my future family, or because it's a "necessity", or I am decorating as a creative outlet.  I love how the Holy Spirit really reveals my inner most desires, because I sit her today looking at various homes and thinking "ew I would never live there even for a second because it doesn't have ________." Fill in the blank with basically anything you can imagine: tile color, wood color, the right landscaping, laminate flooring, one car garage, too few windows, the right kind of fence, etc. etc. and so on) My pickyness has no bounds!

I do not need these things!! It's okay to have a spare bedroom with no furniture! It's okay to have brass fixtures (although my husband would disagree).  It is okay to have one bush in the front flowerbed.  While having certain things or making things look a certain way do bring me happiness and delight, it is not delight in the Lord, but delight in the creation.  My former pastor, Matt Chandler, used to talk about this a lot.  How shallow are we that we choose to praise and worship the creation over the creator?  And how ungrateful am I that I don't even appreciate a solid roof over my head, air conditioning, the cushy carpet under my feet, a crisp clean room that is stable and allows me to see through clear windows without encountering the elements, my clothes that provide protection for my body and feet, and I could go on and on for days.  My heart is self seeking and easily led astray from what is important. My Jesus.  

I find hope however in my savior, because the verse I quoted above is not the end of the scenario.  I have been given the ability to see the error of my ways and apologize with my heart and actions to the loving Lord.  And for that I am forever grateful!!

When the disciples heard this, they were very astonished and said, "Then who can be saved?" 26And looking at them Jesus said to them, "With people this is impossible, but with God all things are possible."  Matthew 19:25-26

Custom Pet Portraits

A few custom dog portraits I've worked on in the last couple months.  If you have a dog you would like to shine the spotlight on, visit my Etsy and have a personalized puppy painting made.

Colorado (again) and My 1st Arts & Crafts Show!

I won't even address the fact that I haven't been blogging, except to simply say...I haven't been blogging....and I apologize :) 

My husband and I took yet another journey to Southfork, Colorado the last week of February for time away with friends and also sort of an anniversary trip!  We celebrated 4 years of marriage on February 27th!  The time sure has flown past and I cannot believe he still puts up with my antics :)  Really though, what a great man I married!  So thankful! 

We took a train ride form Durango to Cascade Canyon.  It was...awesome!  But that's for another post!

Upon our return from sunny...err supposed to be snowy colorado (the trip was a bit warm), I set straight to work on ceramics for my first arts & crafts show.  I worked day in and day out making clay art, since I knew my time was limited.  I had to make sure everything could fully dry out before firing in the kiln.  If you don't let them dry out completely, as in all the way through to the very core of each piece, then when you fire it....BOOM!  And as I told  (and regretfully had to show) my students, clay will indeed explode if it is too thick and not properly vented.  Basically the steam produced from the water in the clay and the heat rising to 1800 degrees needs a way out of the ball of clay.  That way out is to explode if you did not make a hole or let it dry thoroughly.  It would all be fine if it i just ruined one piece of art, but we know that when things explode, they throw debris, which can destroy neighboring works of art.  I did NOT have time to remake any broken pieces, so I let them all dry for a week before firing.  

Ready for a bisque fire!

During the drying phase, though, one of my best friends came to town to visit!  Tomara stayed with me for a few days during Austin's SXSW event.  We spent lots of quality time together laughing and lounging, seeing a man in a speedo at the park, braving the crowds of 6th street for some free music, and getting our noses pierced....well...at least I did :-P.  I love seeing Ms. Rock!  She is an incredible & encouraging friend and loves the Lord with all her heart!  :)

So that finally gets us to the last week.  Chance was at GDC (game developers conference) in San Fran for the week, so I  worked endlessly again painting and finishing all those fired ceramic pieces.  I got very little sleep last week, but I have SO many cute little creations just waiting to be taken home with someone soon.  

My first arts & crafts show was this past Saturday and was a pretty miserable failure.  Not for a lack of effort, but the show was just not well attended.  Those who did attend....looked like they might all have come from a nursing home bus that dropped them off for the day.  Truly though, elders don't really want to spend $25 on an owl sculpture.  Hehe.  The few children who were around that day though LOVED my booth.  They wandered in taking in all the sights of each small piece with huge smiles on their faces.  Totally made the lame day worth it!  I did manage to make a few sales, which covered my booth fee plus some.  I can't complain.  I got to see what my set up would look like and now I have a ton to upload to my etsy.  No big thang!  

One benefit of buying my work from a show is no shipping AND you get a discounted price since there are no etsy fees to deal with.  Nonetheless, many of these pieces will be up on my etsy soon if you are interested in purchasing.  I am actively searching for another spring show and going to get busy creating so I will have a large inventory for multiple fall shows!  I WILL be successful at this artisan thing :-P.  Thanks for stopping by!