Tuesday, November 12, 2013

I never intended to....

I never intended to head off to college at Missouri Baptist University. Growing up in the sweet little 'burbs that is St. Charles, I just always assumed I'd attend Lindenwood. I was an average student (I say this, jokingly, but seriously. My graduating class had 644 students. My rank? 322. Smack dab in the middle of mediocrity. I knew I wasn't going to community college, and equally knew Purdue, and even Mizzou were out of my ACT score reach. So, when my BFF headed to MBU and said "You should TOTALLY come with me!!" I went.

I never intended to cheer in college. Again, that same BFF said "You should TOTALLY come to tryouts!" so I did. Unbeknownst to me, my future was already lining up.

I never intended to teach Special Education. I graduated with my BS in Education, and passed the praxis exams that I needed to teach Elementary school in the state of Missouri. When a friend said "You should TOTALLY come take the SPED praxis with me" I went. I passed on the very first try. In the mean time I took up substitute teaching. After subbing for 6 months, my parents sat me down and said "any job is better than no job. You didn't go to school for 4 years (okay, it was 5) to be a sub." So,  one day the stars lined up. I had taken a week long gig in the SPED classroom at one of the districts elementary buildings. When the teacher asked "Have you ever thought about teaching specials needs children? You have a knack for it." I thought she was just being sweet. When I went to lunch, she called the director and within a week I had an interview for what I like to think, is hands down the best job in the Francis Howell School district. I spent 2 years in the intensive autism classroom at one of the early learning centers. The friendships I made, and the lessons I learned are still with me today. Near the end of that second year, my well meaning parents sat me down again and said "GET.A.FULL.TIME.JOB"  (you see, Howell went year around. 9 weeks on, 3 weeks off. Paycheck, no paycheck. paycheck...no paycheck.) With a heavy heart, I put my application on MO REAP and began applying for jobs. Within 3 days,  the director of Special Education in a town I'd never heard of CALLED ME. For a job I didn't even apply for. I went for the interview and graciously accepted the job. You see, they had a little boy with Autism and in reading my information, she thought I would be a great fit. I still think of that little boy and his role in where I am today.

During my 3rd year of teaching, the cheer squad was without a coach. I'd cheered, but coaching? I wasn't a coach. There wasn't anyone else to do it, so I said "why not." Thinking I would do it just until they found someone else. They never did find anyone else. Fast fwd to the first game of my second season. One of the football coaches dropped off a flag for our squad to run with after we scored touch downs.

I never intended to buy a house in Montgomery, but the 2 hour round trip daily commute was to much. I found what I think is a cute little two story farm house. And I've lived here ever since. The farm is long gone, and the location is considered "in town" by the locals. It is still very country to me :)

I never intended to go to MBU, never intended to cheer. I never intended to teach Special Ed, never intended to become a coach. I never intended to move to Montgomery, or to buy a house. I never intended to date (let alone MARRY ;) that football coach who dropped off that flag. I had no clue, that while I was simply taking on one new task after another, that God was laying the framework for a beautiful life. I am so so so thankful that God had this plan. That all of those pieces fell together, just as HE  intended. Because, with out ALL of that, I wouldn't have the amazing little boy that I do.

An amazing little boy who just last week, celebrated his first birthday. Just this week, we got to visit our favorite NICU nurse. In seeing Evan sit up, stand with support, hold his bottle, babble, and smile......she said "I remember when they told you he wouldn't do any of that. And how you told them ; Oh yes he will." Ups and downs, twists and turns. At times my heart hurt so badly that I literally felt like it was broken. I've felt joy and love so intense that I believe it can move mountains.  I now have the grace and insight to know that no twist, or turn is without cause. That every little moment is shaping your life. In driving home from that last ultrasound appointment, I celebrated my own little victory. Then this song came on the radio, and I instantly knew it would be mine and Evan's song.

It spoke to EVERYTHING I INTENDED to do.
(I wont give up on us, by Jason Mraz)
"Our differences they do a lot to teach us how to use
The tools and gifts we got, yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not, and who I am"

Monday, September 16, 2013


When I was in 3rd grade, I was obsessed with the book Where the Sidewalk Ends. A collection of poems and short stories, it was that book that made me want to read.  Every day durring SSR (Silent sustained reading, the 1987 buzz word for you teacher friends out there :) This was my "go to" book. My favorite was a poem about a little girl who didn't want to go to school. "Sick" was the title. 26 years later, I can almost recite it word for word. Which is quite a feet, considering I can barely remember what I wore to school yesterday. Yes, there is also some irony in the fact that 26 years later...I am STILL IN SCHOOL.

Deep within those pages, buried somewhere between "jumping rope" and "the loser", was a poem simply titled "Listen to the must'nts" I dont know if I ever read it, or if my bright little blue eyes danced over the words without a second thought. What I do know is that this poem, these words, now replay themselves over and over in my head, no less than a few times a day. Every time I look at Evan, I wonder what will be. As that ache begins to swallow up my heart...I think of my first week in the NICU, and my time with Dr. S.

Dr. S was the attending when Evan arrived in the NICU. Before his first MRI, before his first CT scan...she was the one who greeted Evan. By the time I was discharged from St. Mary's, Evan had been in the NICU for 4 days. Her words were clear and she held my attention in a way none of the other doctors ever had. There was pitty in her voice, and I wasnt sure how to take it. I know she thought I was too bubbly for the situation. In fact, I am pretty sure she thought I was out of my mind. She had seen his scans. She was the first to say the words "Goldenhar" and "DO NOT GOOGLE IT." During my first full night in the NICU, she took my hands and cupped them in hers. Making eye contact she said "Oh, honey. He is GOING to be delayed."

I wanted to laugh at her, I wanted to grab her hand and with all the compassion I muster up, say "BUT HE IS HERE! He is free of the oxygen tubes they warned me about. He has a long road, but I cant worry about that right now or it will suck the life out of me.  Right now, this second, you think i care about aDELAYS????"

I didn't say those words. I smiled, and said, "I know. And who better than help him reach his potential, than me." Then, something in my heart skipped. How would I get him to where he needed to be. How would I help him overcome all that he was facing?  As she rambled on, I thought to myself..."You, Doctor S, are JUST a person. You have NO CLUE what can be....and the poem I had found while pregnant came back to me...

Listen to Mustn'ts, child, listen to the Don'ts.
Listen to the Shouldn'ts, the Impossibles, the Won'ts.
Listen to the Never Haves, then listen close to me.
      Anything can happen, child, Anything can be.

Soon after this conversation, the attending changed. (As they do every two weeks in the NICU at Glennon.) Dr. S left, and Dr. K's name went up on the dry erase board. Dr. K was a breath of fresh air.Dr. K, Dr. B and Nurse Lisa took amazing care of our family. They pulled us through some pretty dark days. Leaving Glennon was one of the happiest moments of my life. HOME. We were GOING HOME!....
But home meant no Lisa! No Dr. B! No Dr. K!  Fear set in again, and then the poem replayed.. Over those first few weeks we began the referral process for Missouri First Steps. Evan has several therapists that help us make him the best Evan he can be. And then, where human ability stops, technology takes over. Through the Moog School for the Deaf, Evan received first his hearing aide at 3 months old, and now he has his BAHA. A bone conductor hearing aide that is worn, at this time, on a head band-Evan now has access to sound on the left side. The first time we was fitted he threw a FIT. Once home, you can see the impact. As a mom, it was both heartbreaking (He was missing out on SO MUCH SOUND) and the most amazing gift........

the ability to LISTEN. 

Listen to Mustn'ts, child, listen to the Don'ts.
Listen to the Shouldn'ts, the Impossibles, the Won'ts.
Listen to the Never Haves, then listen close to me.
      Anything can happen, child, Anything can be.


Tuesday, September 3, 2013

summer update

  • Conversation started July 6
  • Kim Albers Clements
    Evan update:

    * This update was sent out earlier in the summer via msg of fb. While the info is a bit dated (July) I felt it still needed to be shared :)
    Evan had several doctors appointments last week. Ocularist (his left eye) Craniofacial team (for the shape of his head) an EEG (to check for seizure activity) and neurology (they study the brain and how it is functioning)
    At the ocularist, he got a new spacer in his eye that has really opened his eye up even more. We will go back in 6 weeks for the next increase.
    The craniofacial team is monitoring the shape of his skull. We are hoping with his recent shunt setting change, that the ridges on the top of his head level out. We had to discontinue the helmet therapy for a few reasons, all too lengthy to explain. Evans brain growth is our number one concern, and we can’t have anything that may constrict the skulls ability to grow where it needs to. We go back Sept 11th to see how things have progressed. Please pray that they level out on their own
    We also saw our neurologist, and then Evan had an EEG done. The EEG showed no signs of seizures which is a really REALLY good thing. But it did show that in one part of his brain, the waves were slower. This is called static Encephalopathy. There are MANY many kinds of encephalogy. Some deal with the brain, others with kidneys and liver. Some are degenerative (in that they get worse) Evans are “static” which means stable. It will never get any worse. Most are caused by some type of brain injury and can happen at any age. Obviously Hydro is a traumatic brain injury. Because of the fluid, his brain was damaged. We already knew this, but in some kids, when the fluid drains and the brain fluffs back out (which Evan’s has) the waves are at a normal rate. For some kids, there is lasting damage, hence the encephalopathy. The good news is this, the encephalopathy has always been there. This isn’t new. Evan has been making fantastic progress WITH this area of his brain damaged. For some kiddos, the damage is in many parts of their brains. When you look at what parts of your brain are responsible for what, I find it comforting to know it is in one single location. Kids with hydro are at a much higher rate for seizures, and the encephalopathy only increases that risk even more. We will be seen at glennon every 4 months by the neuro team to monitor this. Our neurologist was very impressed with how well Evan was doing at the appointment and made several comments about his ability levels. (they did a little “developmental screening” before the EEG. She made note of how well he was babbling, and said the slower waves were in the “back” of his brain, which I am assuming means it is in the area of the brain that controls speech. She said to continue making him our focus and that what we are doing is working. He is obviously very stimulated and has been receiving several forms of therapy (weekly hearing, vision and physical therapy in our home) and monthly audiology at moog. She said to continue those, with the addition of speech in the coming months. She said that when looking at CT scans and MRI’s, she has seen many children that by all accounts from the images, should be low functioning, yet their brains have re-wired and they are “typically developing” children. We already know that Evan is the best Evan he can be!
    I didn’t mean to write this lengthy of an explanation, but I wanted everyone to know what was going on. Sometimes when the story is re-told words get left out, missprounced, ect and people are left with a much more dire view of the situation. I also think (know ) the internet is FULL of crap-tastic information. For a reputable source of this, I’ve added a link. Not that I expect you all to read it, but if you are going to google it, at least read information that is correct Plus, this one is extremely positive.
    As always, if you have any questions-Mark and I have NO PROBLEM talking about this.
    Thanks everybody! And as always, please keep the prayers coming. All of this info will be in Evans blog but not anytime this week or next.
    PS: I typed this in about 9 minutes, so please excuse the grammatical errors.

Saturday, June 29, 2013

What a difference one year can make

June 27th, 2013
One year ago today we headed into our 20 week ultra sound. We walked out numb, scared and downright nauseous. "There is fluid on his brain. It could be spina bifida, it could be nothing." No real answers, no real plan, just those words. Fluid and brain. By all accounts, joy was replaced by fear, excitement was replaced with anxiety and every bit of hope I had was something I had to fight daily to keep a grasp on.

Before the ultrasound, we had made plans to go to dinner. So, we did. I ate 3 bites and cried the entire time. Thinking "what in the world are we doing here. Why did we come here." Looking back now I think that was an indicator of how we would handle this situation and everything else that was thrown at us over the course of the past 365 days. We kept going. I went to work the next day, and cheer camp every night that week. Mark went to work, and continued on with his grad classes. We had no idea what the future would have in store, but we knew the best way to deal with all was to keep on chugging. 
Evan arrived, and all the doom and gloom went out the window. He was strong, he was healthy, and aside from the pesky fluid and a little unknown syndrome called OAV, or Goldenhar, the kid ROCKED. APGAR with scores of 9 & 10, no need for oxygen. He would need a feeding tube, but in the realm of what could have gone wrong, that was nothing.

We went on to spend 29 days in the NICU. During this time, we celebrated Thanksgiving and our one year wedding anniversary.  We got to spend Christmas at home. We would head back for a one night stay in mid January when his ETV failed, and his shunt was placed. Since then, we only head to Glennon for his appointments, which are getting fewer and farther apart. What was once 2 appointments a week, is now closer to 3 a month. Each appointment gets Evan that much closer to being the best dude he can be

Here is an update of how things have changed over the past 8 months.

Evan began seeing his ocularist when he was 30 days old. He is currently on his 7th spacer. These spacers increase the ocular orbit (eye socket) and are increased in size each month. Hopefully by his first birthday, Evan will have a beautiful blue eye on the left side to match the one on the right.

Evan’s early ABR’s (hearing screening) showed moderate to severe loss in his “good ear.”  Hearing in his ear that has microtia (under developed ear) could not be assessed in those early stages. Since there is no opening, there is no hearing on that side at this time. St. Louis is blessed to have 3 major schools for hearing impaired children. Given the choice, we went with the Moog Center and could NOT be happier with the care, education and assistance we have received. A hearing aid was fitted when Evan was 4 months old. We drive to Moog once a month where we spend an hour in the audiology booth, and 45 minutes with our parent educator. His “Moog girls” as I like to call them are also amazing. Over the course of the past 3 months, Evan has shown his loss to be more in the moderate range. (amazing news people J  He also has echo’s on his OAE’s (Children with hearing loss are not supposed to have echos) But he does. We have no idea what that means, but for whatever reason, it makes me happy.

Our ENT may just be my favorite doc. Dr. Do is extremely gentle and talks very slow. He explains everything 3 times and I always leave feeling like he could have talked for 30 more minutes. When Evan was born, we were told he need jaw reconstruction when he was 7 or 8. Through CT scans we now know he has 90% of his mandible and won’t need the surgery. When Evan was born, he had facial palsy on the left side of his face. I noticed a change in his smile at month 5. The upper left corner had a crease that wasn’t there before. Dr. Do said sometimes the nerves come back. I am now starting to notice the lower left corner is moving some too. More and more good news J 

Evan’s shunt was placed on January 17th. Every day I check his head and once a week I do a measurement. I check his shunt and the area where the tubing is. Every day when I see that bump, I am reminded that a manmade device is keeping him alive. Shunts can malfunction at anytime. I believe the stat is that 50% malfunction in the first two years. At our most recent visit, our CT scan showed “Happy brain” as our neurosurgeon so eloquently explained it. There is still fluid, but in the areas where the fluid has drained, Evan’s once scrunched up brain is fluffing out. So far Mr. Shunt is doing its job. MORE VERY GOOD NEWS
J Because of the shape changes in Evan’s head, he needed a helmet. We are currently on a “helmet break” to see if it is impacting his ridges. We meet with the craniofacial team on July 2nd to see where we go next in getting his noggin to look “normal” Evan's monthly visit to the "helmet dude" have shown steady progress prior to our break.

The fluid on Evan’s brain impacted the way his brain formed. His pituitary gland is smaller than it should be and sits at a slight angle. We were told it could impact a number of things, and Evan is closely monitored. Thus far, only his hyrocortisol numbers are “abnormal.” In the event of moderate illness, or surgery, Evan simply takes a pill. During those freakishly scary first few days in the NICU, many doctors trotted in and out. Dr. De came by at 10pm on day 3 and gave us his concerns and simply said “I’ll be your favorite doctor because if anything is wrong, I can simply treat it with a pill.”

Evan has two butterfly vertabrae near the top of spine, and his spine has a slight curve. We have no idea how this will impact him, this is the one area that isn’t being addressed by any doctor or department.

Evan has hit some of his milestones exactly when he should. Some are running 2-3 months behind. He is crossing his mid line and from day ONE has brought his hands together. Remember, way back when I wrote my first blog after he was born I talked about the absence of his corpus callosum. This is a big word for the fibers that connect your right brain to your left brain. At first we were told Evan didn’t have one (which isn’t uncommon in kiddos with hydro, but would make the task of bringing ones hands together, or crossing the mid line when you use your right hand to grab your left foot would be difficult) We have now been told it is there, but it’s very thin. His “praying hands” as we call them have always made me smile. Further proof that progress is being made. Evan currently has PAT (parents as teachers) once a month with fantastically wonderful woman. A woman I got to share an office with during my first 5 years teaching. (Funny how things come full circle.) We also have First steps. Evan gets weekly visits with a hearing specialist and monthly visits with the vision specialist and a physical therapist.

Well, I believe that sums it up. In a nut shell I could have said “We were told a bunch of really scary stuff. Some of that stuff happened. Some of it didn’t. Some pretty crappy stuff that we didnt know to worry about knocked the wind out of us. Some of the bad stuff, improved and became good stuff. Whew, it’s been a wild 365 days!

One last thing…Evan’s ocularist has a glass eye. Evan’s Audiologist at Moog, and our parent educator both have profound hearing loss in one ear. Evan’s endocrinologist also has glandular deficiencies. Our ENT has a son who is Deaf. When we were first told that horrible news one year ago, I was afraid Evan wouldn’t even make it to today. I had no idea what his quality of life would be. Now, seeing everything he has overcome, accomplished and surpassed…I can’t help but wonder what Evan will be one day J

Wednesday, January 30, 2013

Warrior spirit

Before Evan was born, the docs gave us the worst case scenario  We will take him early. We will airlift him. You may only have a few seconds to see him. We don't know if his lungs will be developed  We don't know if he will breath on his own. We will stabilize him and prep him for shunt surgery as soon as he is strong enough. We will monitor him for seizure activity..blah blah blah. I prepped for the worst and prayed for the best.
Did the fluid go away? No. BUT the BEST that could have happened, did. Our prayers were answered in the God intended them to be.
He was born. He breathed on his own, he cried and he was strong. He came into this world and surprised us all. He came into this world without his left eye, his left ear, with a slightly curved spine, a small pituitary gland and an extra rib.  He came into this world with a small, pea sized tumor in his noggin that I despise. I HATE THAT TUMOR. IT caused the blockage that caused the fluid. Having Goldenhar is a bad enough....and in RARE cases, Goldenhar presents with hydrocephalus. Stupid Tumor.
That "stupid" tumor also gave us a GREAT opportunity.  We could avoid the shunt. We had the chance to give Evan a shot at a shunt free life. Soon after I got to leave St. Mary's and join Evan in the NICU, we were told that Evan was a candidate for the ETV (endoscopic third ventriculostomy) Our neurosurgeon would go in and place a small hole in the floor of his ventricle. Very few surgeons perform this brain surgery on children under the age of 2. Under the age of 2, children have only a 40% success rate. To be given a shot at this was a blessing. Mark and I spend 2 days in the NICU discussing the options. A shunt can fail at any time. 50% of shunts fail in the first year. . Poor kid had been dealt quite a hand....this was his big break :) I truly believed in my heart that the ETV was going to work.
Seeing him in that crib, prepped for ETV surgery was my lowest point. NO CHILD should have to go thru this. No mother should have to sit in a hospital recovering from delivery without a baby. No father should have to pack a car and drive his wife home with a empty car seat in the back. IT WASN'T FAIR. But the ETV..this was going to make up for all of that.
Evan went in for surgery. He came out with a big bandage  Our neurosurgeon said it was one of the most successful surgeries he had ever preformed on a neonate. This was day 12 of Evans of life.
Day 13, day 14 day 15....everything looked good. Day 16, 17...18.19....
During rounds on day 20 (8 days after surgery) his head circumference jumped. They attributed it to the plates "leveling out"...
we left the nicu on day 29. Evans head circumference never stopped growing.
On January 17th at 11 weeks old Evan got his shunt. The ETV had failed. We got to cardinal Glennon and checked in. I was handed the smallest hospital gown you've ever seen and THAT broke my heart. The fact that so many children go through illnesses & accidents that these little gowns are common place just sucks. No eloquent way to say it.
This time I got to carry Evan from the pre-op room to the surgery floor. He was as happy as a clam and looked adorable in his gown, I might add. We sat and waited for anesthesiology to come get him. 4 hours later he was done,  He got another super cool bandage and another battle scar. A one night stay is WAY better than 29 :)
When he woke up the next morning, he was his old self. He smiled at his dad and kicked his legs. He was 11 weeks old and had just survived his 2nd brain surgery. and he was a happy baby :)  Once again, he pulled thru and was no worse for the wear. I hate that the ETV failed, but I am still thankful that God gave us a shot at it. We have no guarantees that his shunt will function properly, it could be 6 days or 6 years before his next surgery....but what I do know is this. Evan is going to take each challenge head on. He will overcome it, and we will make the best of it. And so will we. After all, with a warrior spirit like his, how can that NOT be contagious?

Monday, January 7, 2013

The unknown

"We may never know what caused this."

One of the doctors said these words to Mark and I as we were leaving the fetal care institute in early August. By that point, I knew there was major problems, and I'd been watching the fluid build up week after week. My concern wasn't what caused it, my concern was how it was going to effect my baby. Would Evan make it to our due date? Would Evan be able to breath on his own? Would Evan make it home? This is what I worried about. The unknown. Most days I was faithful that he would be okay, but those fears crept in at times, I'm not going to lie. Knowing what caused the blockage just didn't matter to me. I am sure some parents want to know, but I wasn't one of them....so guess what? Soon after Evan's delivery, I would get to find out EXACTLY what caused the aquaductal stenosis. And what caused that is something that happens randomly, with little explanation in every one in 5600 births. 

I am going to go off on a side note for just a second. I never intended to go this long between posts. I cant even chalk it up to being a busy new mom. The first 29 days of Evan's life we spent the vast majority of our time in room 1823 at the NICU at Cardinal Glennon. I was never so happy as the day we went home, but I was also sad. That place was Evan's first home. Those nurses will forever hold a special place in my heart. In those 29 days I spent a LOT of time sitting and watching Evan. I had more than enough time to blog, but I didn't know what to say, or how to say it. Things changed daily, minute by minute in fact at times. I also wasn't ready to tell everyone that Evan's Hydrocephalus wasn't a random isolated occurrence  It was a bi-product of a much bigger issue. A syndrome that even as a special education teacher, I have never heard of. All of the things I worried about (Him breathing, the rush to cardinal glennon...none of that was worth my worry. He had apgar scores of 9/10. But when Mark carried him over to me, minutes after being born, I knew, I knew something else was wrong. 

Evan has Goldenhar syndrome, also called OAV ( Oculo-Auriculo-Vertebral) For Evan, that means that his left eye did not form. His left ear is very small and there is no opening. Two of his vertebrata are butterflied and he has a 13th rib. Evan's left jaw is underdeveloped, and he has palsy on the left side of his face. Evan has focal alopecia on the left side of his head, yet right above that, he has a tear shaped purple mark, where the hair has grown out 2-3 inches. It sticks straight up and makes me smile every time I see it. Evan is also the cutest little boy I know. Evan has a button nose and a cute little baby mullet  He is laid back and sweet. and only cries when he needs to tell us something. Evan has done better than anyone thought he would. Evan has a mom and a dad who will move mountains to give him what he needs. Evan also has a lipid tumor, just between his third and forth ventricle in his brain. THIS is what cause the fluid to build up. The fluid would keep his brain from forming the way it should. It caused Agnes of the corpus collosum. Evan's pituitary gland is smaller, and sits at an angle. Evan's sweet demeanor and warrior spirit won the hearts of his resident doctor and the greatest primary nurse in the NICU. There are many things "wrong" with Evan, but there are so many things that are RIGHT.

His lungs, heart and kidneys are healthy. He never needed oxygen and breathed on his own from the word go. He is strong and has been through more in 8 weeks of life than most kids go through in 20. He is HERE, and every morning when I wake up, panic hits, just for a moment. Then,  I lean in....and when I hear it, my heart skips a beat and a rush of joy fills my heart. I hear his steady breaths going in and out and I thank God for getting my baby this far.