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.