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

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